This week at IVUN ...

December 16, 2013

MAY 31-JUNE 3, 2014

Promoting Healthy Ideas, PHI's 11th International Conference

Latest Program Information

Registering for Promoting Healthy Ideas: PHI's 11th International Conference

Reserving a Hotel Room

Preliminary Information  


From Prior Weeks at IVUN ...

September 2, 2013

Promoting Healthy Ideas, PHI's 11th International Conference

Preliminary Information

Latest Program Information (updated 9-6-13)

Reserving a Hotel Room (updated 9-2-13)

   

Registration for the conference is unavailable at this time. We will keep you informed of any changes through the newsletter, Membership Memo emails, and Facebook. Continue to check back here periodically for updates.

July 29, 2013

Promoting Healthy Ideas, PHI's 11th International Conference

Preliminary Information

 

July 24, 2013

IVUN's Ninth Educational Conference Call

Wednesday, July 31, 2013 at 1:00 PM CDT
My Continuing Medical Education as a Post-Polio Patient/Physician
Bonnie Jo Grieve, MD
Reservations are required to be on the call. To reserve your spot, contact info@ventusers.org. Reservations are on a first-come, first-served basis.

photo of red Jazzy 600June 20, 2013

Jazzy 600 with reclining feature and a that tray fits the LTV 800 is available in the St. Louis area for $1,500. It is also equipped with a backup battery and is in very good condition.  Please contact info@post-polio.org or 314-534-0475 if interested, and we will connect you with the seller.

 

June 13, 2013

Lose power during a recent storm? Check out the batteries that can run for 16 hours or 24 hours without a recharge. (Time depends on model, settings, etc.)

May 31, 2013

Competitive Bidding Expands: Has it come to your area, yet? What is it?

Photo of wheelchairMay 20, 2013

A very nice power wheelchair available for best offer. My sister, Kathleen, used it for six months in a nursing home before she passed. It has an optional, removable vent tray, tilt in space option and joy stick. It comes with a battery and charger. My sister would be happy to know that someone was using it. Although it cost $13,598 new, you may have it for a donation to PHI. If anyone is interested or wishes to see it, call me at 616-304-3412. It is currently in storage at Marywood Dominican Sisters Motherhouse on Fulton St. in Grand Rapids, Michigan.

May 1, 2013

Medicare is expanding competitive bidding in July 2013. To find out what that might mean to you:  Beneficiary Introductory Brochure April 2013

April 23, 2013

From the FDA:  Covidien Issues Voluntary Recall of Power Pac Batteries for Newport™ HT70 and HT70 Plus Ventilators

April 9, 2013

Articles of Interest:  The journal, Anesthesiology, published a Review Article – Postoperative Respiratory Muscle Dysfunction: Pathophysiology and Preventive Strategies and an Editorial – Postoperative Respiratory Muscle Dysfunction: Only the Strong Survive in its April 2013 issue.

April 2, 2013

IVUN’s Seventh Educational Conference Call will be held the last week in April. Do you have a topic you would like discussed? We are planning a future call about attendant care/personal assistance services.

March 18, 2013

May 31, Friday. 2013 Home Mechanical Ventilation (HMV) UK Meeting,” hosted by Lane Fox and held at St. Thomas’ Hospital, will explore the challenges experienced by health care professionals caring for patients dependent on home mechanical ventilation, requiring continual care using highly advanced technology. The meeting will be chaired by Dr. Nicholas Hart, Clinical Research Consultant in Respiratory & Critical Care Medicine, Guy's & St Thomas' NHS Foundation Trust and Kings College London Comprehensive Biomedical Research Centre and Dr Mark Elliott, Consultant Physician in Respiratory and General Medicine, St James's University Hospital, Leeds.

To reserve a place and for further information on future courses and events, please visit www.guysandstthomasevents.co.uk.

February 25, 2013

IVUN is creating an area on www.ventusers.org that will gather “Travel Problems and Solutions” of ventilator users worldwide. The data will be in a searchable database, so others can access it.  Help us. What information should we collect? Send your ideas to info@ventusers.org. Note: this is for all travel, not just for flying.

February 11, 2013

Interdisciplinary Perspectives on Spinal Muscular Atrophy: Defining Your Role, Wednesday, June 12, 2013, The Disneyland Hotel, Anaheim, California. Sponsored by Families of SMA and University of Wisconsin School of Medicine and Public Health, Dept of Pediatrics. CEUs offered by The University of Wisconsin- Madison.

January 30, 2013

Reminder: The PowerPoint presentations from IVUN's Educational Conference Calls are online. Connect here ...

January 13, 2013

Have you had your flu shot? It is not too late. Use the Flu Vaccine Finder and get vaccinated now. Is it a cold or the flu?

January 11, 2013

The 5th Universal Design Summit coordinated by the Starkloff Disability Institute and the R.L. Mace Universal Design Institute will be held May 6-8, 2013 at St. Louis University. Registration is now available.

2012

December 19, 2012

Members of IVUN

Thank you for your continued support of our educational, advocacy and networking activities, and for your support of the separate Research Fund. Remember that PHI creates www.polioplace.org and www.post-polio.org, too. End-of-the year donations are accepted online at http://shop.post-polio.org/ or by mail.   

PHI’s Board of Directors and Staff wish you and your loved ones a peaceful and happy holiday season.

December 17, 2012

Ventilator-Assisted Living (Vol. 26, No. 6) was distributed to IVUN Members on December 13. Check your email for the link to the pdf.

December 3, 2012

IVUN Members: Thanks for joining us on IVUN's Third Educational Conference Call Wednesday, November 28, 2012. Our next and fourth call will be in January. If you have suggestions for topics, let us know. (See yellow box on www.ventusers.org for past presentations and future topics.)

November 13, 2012

Have you seen the movie advertisements for “The Sessions” starring John Hawkes, Helen Hunt and William H. Macy? Want to know more about the story that features a polio survivor? Check out “The Sessions” – Polio and Sex on the Big Silver Screen. Read more ...

November 6, 2012

IVUN Members: Ventilator-Assisted Living (Vol. 26, No. 5) was distributed Friday, November 2. Please check your email.

October 24, 2012

FYI: Settlement Eases Rules for Some Medicare Patients from October 23, 2012 The New York Times.

October 9, 2012

image of people on phones and computerIVUN’s Second Educational Conference Call:
WHAT? “Understanding How New Generation Portable Ventilators Can Lighten Your Load”
WHEN? Wednesday, October 24, 2012 at 1:00 pm CDT
WHO? Cyndy Miller, a registered respiratory therapist who has been a clinical educator for more than 26 years. Cyndy specializes in: optimizing mechanical ventilation and synchrony as well as transitioning patients to/use of portable ventilators for long-term ventilation. Cyndy works for Covidien Respiratory and Monitoring Solutions at the Newport Medical, Costa Mesa Office.
HOW? The call is free, but reservations are required, and available space will be first-come, first-served. To reserve your place to participate in the call, send an email to info@ventusers.org or call 314-534-0475. On Monday, October 22nd, you will receive instructions for joining the call.

October 9, 2012

image of people on phones and computerIVUN’s Second Educational Conference Call:
WHAT? “Understanding How New Generation Portable Ventilators Can Lighten Your Load”
WHEN? Wednesday, October 24, 2012 at 1:00 pm CDT
WHO? Cyndy Miller, a registered respiratory therapist who has been a clinical educator for more than 26 years. Cyndy specializes in: optimizing mechanical ventilation and synchrony as well as transitioning patients to/use of portable ventilators for long-term ventilation. Cyndy works for Covidien Respiratory and Monitoring Solutions at the Newport Medical, Costa Mesa Office.
HOW? The call is free, but reservations are required, and available space will be first-come, first-served. To reserve your place to participate in the call, send an email to info@ventusers.org or call 314-534-0475. On Monday, October 22nd, you will receive instructions for joining the call.

October 1, 2012

FYI: Home Mechanical Ventilation: Bringing Patients Home with Improved Ventilation Options by Kelly Garber and Michelle Guertin. New technology has made it possible for home ventilation patients to benefit from "hospital-only" therapy, but such therapy is costly, and reimbursement is sometimes problematic.

September 14, 2012

IVUN's First Educational Conference Call on September 12th featured an explanation of the Trilogy and hints on how to transition to it from the discontinued PLV-100 and 102. The latter units will no longer be serviced after December 2014.  IVUN's Second Educational Conference Call will be October 24th and feature a respiratory therapist and educator from Covidien, who will explain options from their line of breathing devices/ventilators. The maximum for each call is 30 people. The calls are available to IVUN Members first. Watch www.ventusers.org for details.

September 6, 2012

Ventilator-Assisted Living (Vol. 26, No. 4) was distributed to IVUN Members on August 23rd. 

As promised, Part II of "Understanding Chronic Obstructive Pulmonary Disease (COPD)" is featured in our August issue. Learn about Jacob Gapko's set-up for mouthpiece ventilation and about his educational and professional accomplishments.

On page 7, IVUN announces the fall schedule for its educational conference calls for long-time vent users and explains how to sign up.

August 20, 2012

FYI: Certain Covidien Shiley Adult Tracheostomy Tubes

FDA Updates Notification of Respironics Ventilator Recall

August 6, 2012

Follow the progress of the US Senate ratification of the Convention on the Rights of People with Disabilities (CRPD

July 27, 2012

The USICD reports that during the week of July 30th the Convention on the Rights of People with Disabilities (CRPD) will go to a full floor vote in the Senate because the US Senate Foreign Relations Committee voted 13-6 to do so on Thursday, July 26th. It is essential that every Senator hears the American disability community’s support behind this important treaty in order to achieve successful ratification! Call the Capitol Switchboard at 202-224-3121 or visit here in order to contact your two U.S. Senators. 

July 23, 2012

The US Senate markup and vote on the Convention on the Rights of People with Disabilities (CRPD) has been rescheduled for the Anniversary of the Americans with Disabilities Act: Thursday, July 26 at 9:30 am in Dirksen G-50.

ACTION ALERT: United States International Council on Disability (USICD) need as many people to attend as possible – so get the word out! Follow one of the appropriate links below to sign on as either an individual or, if authorized, for your organization. See Update. And ...
Link to the Full Letter; Click here to sign on as an INDIVIDUAL; Click here to sign on your ORGANIZATION

 

IVUN's Home Ventilator GuideJuly 9, 2012

 

IVUN, part of PHI, recently updated its
Home Ventilator Guide.

 

Check it out ...  

July 2, 2012

Drive4COPDis a multi-year public health initiative to screen the millions of people who may be at risk for COPD. As many as 24 million Americans may have COPD but approximately half don't know it and remain undiagnosed. Click on logo ... 

June 26, 2012

For persons with significant physical disabilities, CMMS Deshae Lott Ministries is accepting scholarship applications for post-bachelor's-degree programs (due July 1) and quality-of-life grant applications (due November 1)

Scholarship awards will be announced by Labor Day; Grant awards will be announced by the end of the year.

Click to open the DirectoryJune 15, 2012

 

 

UPDATED: 

Resource Directory for

Ventilator-Assisted Living

Click image to open the Directory ...

June 5, 2012

Announcing: 29th Pacific Rim International Forum on the Rights of Persons with Disabilities, April 27th and April 28th, 2013, Hilton Hawaiian Village, Honolulu. Hawaii, Call For Proposals – Opens August 1, 2012. (prinfo@hawaii.edu, www.pacrim.hawaii.edu)

May 29, 2012

Check out this article from the NEMJ:
Current Concepts, Dysfunction of the Diaphragm, F. Dennis McCool, MD, and George E. Tzelepis, MD (N Engl J Med 2012;366:932-42).

May 7, 2012

Click to begin

April 16, 2012

From an IVUN Supporter:

Passy-Muir, Inc. announces NEW Free Live Event Webinars in May – 3rd, 17th, 21st and 24th. CEUs offered.

April 6, 2012

Live in the Cleveland area? Dr. Peter Salk will present "Jonas Salks Legacy: Immunization, Institution, Inspiration" at the Cleveland Medical Library Association annual meeting on April 27th. See flyer for details.

April 1, 2012

Reminder: Spring FOCUS on Respiratory Care, Sleep Medicine, and Critical Care Nursing Conference will be held May 10-12, 2012 at the Gaylord Opryland Hotel, Nashville, Tennessee.

March 6 , 2012

Full-time and Part-time Users of Home Mechanical Ventilation: Your experiences and opinions wanted!  The survey is available in English, Dutch, French and Spanish. MORE...

Surveys received by March 5th have been included on a poster presented at the joint meeting of the 13th International Conference on Home Mechanical Ventilation and the 4th European Respiratory Care Association Congress will be held March 15-17, 2012 in Barcelona, Spain.

IVUN will accept surveys until June 1, 2012 for its final report.

February 27, 2012

DEADLINE: MARCH 5, 2012*
Full-time and Part-time Users of Home Mechanical Ventilation:
Your experiences and opinions wanted!  The survey is available in English, Dutch, French and Spanish. MORE...

*Surveys received by this date will be included on a poster presented at the joint meeting of the 13th International Conference on Home Mechanical Ventilation and the 4th European Respiratory Care Association Congress will be held March 15-17, 2012 in Barcelona, Spain. IVUN will accept surveys until June 1, 2012 for its final report.

February 6, 2012

Full-time and Part-time Users of Home Mechanical Ventilation: Your experiences and opinions wanted!  The survey is available in English, Dutch, French and Spanish. MORE... The focus of this survey is flying as a ventilator user and we ask you to complete it even if you think you will never fly. There are questions for you. Please pass this message on to other vent users. Thank you!

What will we do with this information? IVUN is surveying the manufacturers of  portable/home use ventilators and numerous airlines, too. IVUN will post a report and a summary of its findings on www.ventusers.org and on a poster presented at the joint meeting of the 13th International Conference on Home Mechanical Ventilation and the 4th European Respiratory Care Association Congress will be held March 15-17, 2012 in Barcelona, Spain.

Surveys received by March 5th will be included on a poster presented at the joint meeting of the 13th International Conference on Home Mechanical Ventilation and the 4th European Respiratory Care Association Congress will be held March 15-17, 2012 in Barcelona, Spain. IVUN will accept surveys until June 1, 2012 for its final report.

January 31, 2012

US Transportation Security Administration (TSA) announces launch of TSA Cares Toll Free Helpline (1-855-787-2227) for travelers with disabilities and medical needs.

January 17, 2012

IVUN Issues “Call for Proposals.” We are looking for new and creative research projects.  Check out www.ventusers.org/res/rfcall.html for more information. First deadline is May 4, 2012.

January 9, 2012

Have you read claims about stem cell research? Review FDA Warns About Stem Cell Claims to assure that you get the correct facts.

January 4, 2012

JIVD conference logoReminder: Deadline for abstracts is January 15th 2012 for the 13th International Conference on Home Mechanical Ventilation, March 15-17, 2012 in Barcelona, Spain.

Details of the program and call for abstracts can be found at www.jivd-france.com.

December 12-21, 2011

Happy Holidays!

International Ventilator Users Network (IVUN) has had notable impact on the lives of users of home mechanical ventilation over its 25-year history. Providing information may be our most important function.

We are here. We listen. We react. We find answers. We share. 

You can help support our mission by becoming a Member of IVUN (or by sending an end-of-the-year donation) on our secure site today.

The IVUN office will be closed December 23, December 26-28 and Jan 2, 2012.

cover of IVUN's Home Ventilator GuideDecember 7, 2011

IVUN’s updated Home Ventilator Guide is now available at www.ventusers.org/edu/HomeVentGuide.pdf.

To purchase a print copy, go to http://shop.post-polio.org.

cover of Resource Directory for Ventilator-Assisted LivingNovember 21, 2011

 

The Resource Directory for Ventilator-Assisted Living has been updated and uploaded. 

If you prefer a print copy, one can be purchased online at http://shop.post-polio.org.

 

November 9, 2011

JIVD conference logo13th International Conference on Home Mechanical Ventilation will be held March 15-17, 2012 in Barcelona, Spain.

Details of the program and call for abstracts can be found at http://www.jivd-france.com/.

October 31, 2011

Guardian Angel Medical is developing a product to help caregivers care for ventilator-assisted individuals. If you or a your caregiver and would like to participate in a 10-minute survey, please go to www.GuardianAngelMed.com for details. The first 15 respondents will receive a $25 gift card for their participation.

October 25, 2011

Lives Worth Living premieres on PBS Series Independent Lens on Thursday, October 27th. Check your local listings. Lives Worth Living traces the development of the disability rights movement. Familiar names include Judith Heumann and Ed Roberts and more

October 4, 2011

NEW LIVE EVENT WEBINARS for Speech-Language Pathology, Respiratory Therapy, and Nursing CEU's from Passy-Muir, Inc.:

Check out the FREE clinical continuing education courses offered during the week of October 24-27th. 

September 21, 2011

FREE SYMPOSIUM: Breathing and Sleep, Saturday, October 29, 9:00 am – 2:30 pm, Salk Institute Auditorium, La Jolla, California. Click to view the program and register to attend.

September 7 , 2011

click image for more info

 

 

Check out the updated
Resource Directory for Ventilator-Assisted Living.

 

 

 

August 31, 2011

FREE WEBINAR FROM PASSY-MUIR, INC.
“There’s More to Life than Breathing!”
Wednesday, September 7, 2011, 3:00 PM EST

Patients undergoing tracheostomy for long-term ventilation may face uncertainties about what their future ability to communicate will be. Clear and uninterrupted verbal communication is possible through the use of the Passy-Muir® Tracheostomy and Ventilator Swallowing and Speaking Valve.

Please join Jack Rushton, a home ventilator user, and Linda Dean, RRT, Clinical Specialist from Passy-Muir, Inc., for a live informational webinar about the use of the Passy-Muir Valve.

To register for this webinar, visit www.passy-muir.com/eventwebinar.

August 22, 2011

Qualifying patients for respiratory assist devices: Understanding the Medicare RAD policy, is slated for August 30, at 1:00 pm. This webinar will discuss coverage criteria under RAD policy and review clinical criteria for restrictive thoracic disorder, COPD, central/ complex apnea and hypoventilation syndrome, followed by an overview of a RAD reimbursement qualifier tool. Learn more: Know How webinars, a webinar learning series, from Philips Respironics
rionline.respironics.com

August 15, 2011

Ventilator-Assisted Living (Vol. 25, No. 4) will be distributed to Members this week. Watch for email from info@ventusers.org.

cover of Resource Directory for Ventilator-Assisted Living

August 8, 2011

 

Check out Resource Directory for Ventilator-Assisted Living.

Is your information correct? Should you be added? 

A new version will be uploaded next week.

 

 

August 1, 2011

Description: Facebook logo Like us on Facebook.
International Ventilator Users Network (IVUN)

July 25, 2011

"Neuromuscular Respiratory Medicine: Theory, Practice, and Hands-on Demonstrations" is a special course on neuromuscular disorders and assisted ventilation on Saturday, October 22, in Honolulu, coordinated by CHEST/American College of Chest Physicians Annual Conference. Information on the course and the fees

July 5, 2011

The 13th International Conference on Home Mechanical Ventilation is scheduled for March 15-17, 2012 in Barcelona, Spain. Abstracts are due January 15th, 2012. Instructions will be available soon. Watch www.jivd-france.com.

June 27, 2011

cover of this issue of Ventilator-Assisted Living

 

Selected articles from
Ventilator-Assisted Living (Vol. 25, No.2)

have been uploaded.

 

 

 

June 21, 2011

IVUN Members watch your email: Ventilator-Assisted Living (Vol. 25, No. 3) will be distributed this week.

June 13, 2011

Donation:  A rocking bed that was used for ventilating a patient with a paralyzed diaphragm from ALS is available to any facility or person who may benefit from it. Contact AMCross@aol.com if you are interested.

May 31, 2011

Living Longer Living Better logoVisit the IVUN and PHI booth number 415 June 6 & 7th at the Festival of International Conferences on Caregiving, Disability, Aging and Technology – FICCDAT 2011.

 

May 23, 2011

FREE WEBINAR FROM PHILIPS RESPIRONICS
Traveling with Trilogy: Taking It on the Road
Tuesday, May 24, 2011, 1:00 PM EDT (GMT-04:00)

Register here for the webinar presented by Barbara Rogers, President, Respiratory Resources, Inc.

May 17, 2011

Have you read Steve Gold’s The Nursing Practice Act and the ADA/Section 504? “Then the States argue that, because more nursing services are required (by a nursing practice act) than the waiver offers, the persons are denied Waiver services and must remain institutionalized.”

cover of Ventilator-Assisted Living April 2011 issueMay 9, 2011

Reminder: 

Ventilator-Assisted Living (Vol. 25, No. 2)
is available for download. 

 

 

May 2, 2011

FREE WEBINAR FROM PHILIPS RESPIRONICS
Traveling with Trilogy: Taking It on the Road
Tuesday, May 24, 2011, 1:00 PM EDT (GMT-04:00)

Register here for the webinar presented by Barbara Rogers, President, Respiratory Resources, Inc.

April 19, 2011

May is Better Hearing and Speech Month and Passy-Muir is offering free live webinars on May 11th and the 23rd.

April 8, 2011

Ventilator-Assisted Living Community Calendar lists conferences, workshops and 2011 Camps for Ventilator-Assisted Kids.

click image for more infoMarch 28, 2011

Home Ventilator Guide

UPDATED!

Click image for more info ...

 

 

March 21, 2011

Two new informative websites and one survey:

FIA Foundation for the Automobile and Society Guide for the disabled traveller at www.fiadisabledtravellers.com.

What the Affordable Care Act Means for You at www.healthcareandyou.org.

The Federal Communications Commission (FCC) has launched an online national survey (also in Spanish) of individuals with disabilities to determine the most effective and efficient technologies and ways to access emergency services.

click image for more infoFebruary 26, 2011

 

UPDATED!

Click image for more info ...

 

 

 

 

 

 

February 26, 2011

Scholarships available from CMMS Deshae Lott Ministries Outreach Program to people with physical disabilities pursuing education beyond bachelor's degrees and to help people with disabilities stay in or return to their homes, avoiding institutionalization.

February 7, 2011

StarTribune.com (Minneapolis-St. Paul, Minnesota) features "Airline bumps disabled traveler." Have you had trouble flying while using a ventilator? If so, contact info@ventusers.org.

January 24, 2011

Help us update Resource Directory for Ventilator-Assisted Living.

Are you listed in Resource Directory for Ventilator-Assisted Living? Is your information correct? Send changes and additions to info@ventusers.org.

January 17, 2011

Now online: Check out "Respiratory Care Update," by Lisa Wolfe, MD, Pulmonary and Critical Care, Sleep Physician at Northwestern University, presented at the 2010 ALS/MND Nursing Mini-Symposium.

Post-Polio Syndrome: A Challenge of TodayJanuary 10, 2011

Registration is now open for Post-Polio Syndrome – A Challenge of Today, an international polio conference in Copenhagen August 31st to September 2nd, 2011.

Check out the preliminary program and more details on www.polioconference.com.

January 3, 2011

Max Starkloff, friend of IVUN and its founder, Gini Laurie, will be remembered Tuesday, January 4, 2011.

December 23, 2010

Best Wishes for the Holiday Season from IVUN's Board and Staff.

IVUN's website is supported by its Membership. Become a Member or Donate Now.
Download a Membership/Order Form (pdf) or download a Donation Form (pdf) to print and mail to IVUN, call 314-534-0475, or PayPal to director@post-polio.org.

December 13, 2010

Meet Ferdinand, a ventilator user from Germany, who describs his "breathing history" since having polio in 1958. (in English and German)

December 6, 2010

FYI: Deadline for submissions for the FICCDAT Conferences (June 5-8, 2011) has been extended to Tuesday, January 4th, 2011. FICCDAT will be held at the Sheraton Centre Toronto Hotel, Toronto, Ontario.

November 29, 2010

IVUN Consumer Advisory Committee Member, Liz Martin, presented a poster at the October 5th and 6th Health Care Management meeting held at Airth Castle, Falkirk, Scotland.

November 21, 2010

IVUN's compilation of articles distributed at the November 21, 2010 meeting at the Salk Institute are available: Breathing Problems in Post-Polio. Read about the 2009 Breathing and Sleep Symposium (Vol 23, No. 4).

cover of Breathing in America: Diseases, Progress, and Hope

November 16, 2010

Breathing in America: Diseases, Progress and Hope, published by the American Thoracic Society, in collaboration with the National Heart, Lung, and Blood Institute, is written by nationally recognized authorities in the field of lung disease.

Chapter 20, Respiratory Failure, written by Nicholas S. Hill, MD, discusses neuromuscular conditions.

November 8, 2010

Flying with Ventilation working group under the leadership of Maryze Schonefeld van der Linde, Netherlands, sends letter to European Union Commission. IVUN and Post-Polio Health International sign on in support of the advocacy effort.

November 2, 2010

Reminder: November 21, 2010 (Sunday 9:00 am-2:30 pm). Breathing & Sleep, Salk Institute for Biological Studies, La Jolla, California (Directions). Download the Breathing & Sleep Symposium brochure. Contact: Gladys Swensrud (swensrud@pacbell.net) or Salk Institute for Biological Studies (858-453-4100).

October 25, 2010

New Vent Users Discussion Group:
To join, go to the group home page – http://groups.google.com/group/vent-users. You will find the link to join on the right hand side of the page. After you have joined, you may send an email to the group at vent-users@googlegroups.com.

Book cover of Noninvasive Ventilation and Weaning: Principles and Practice

October 11 & 18, 2010

Released in late September:
Non-Invasive Ventilation and Weaning: Principles and Practice
edited by Mark Elliott, Stefano Nava and Bernd Schonhofer. ISBN: 9780340941522. Hardcover (648 pages). Table of Contents (Chapter titles and authors). Hodder Arnold Publication: London, UK, 2010; Dispatched from and sold by Amazon.co.uk. ( £149.00). Ebook edition: VitalSource Bookshelf

Barbara Rogers of the National Emphysema /COPD Association, a not-for-profit patient group, and Respiratory Resources, Inc., a consulting company, requests that users of home mechanical ventilation complete an internet US Ventilator Users Survey and International Ventilator Users Survey. If you have questions, contact Rogers at 212-666-2210 or by email at brogers@necaweb.org.

October 5, 2010

November 21, 2010 (Sunday 9:00 am-2:30 pm). Breathing & Sleep, Salk Institute for Biological StudiesLa Jolla, California (Directions). Download the Breathing & Sleep Symposium brochure. Contact: Gladys Swensrud (swensrud@pacbell.net) or Salk Institute for Biological Studies (858-453-4100).

September 28, 2010

Inspire–It’s What Respiratory Therapists Do! is the theme of the 2010 Respiratory Care Week, Oct. 24-30. Visit www.aarc.org/rcweek for details. 

November 21, 2010 (Sunday 9:00 am-2:30 pm). Breathing & Sleep, Salk Institute for Biological StudiesLa Jolla, California (Directions). Download the Breathing & Sleep Symposium brochure. Contact: Gladys Swensrud (swensrud@pacbell.net) or Salk Institute for Biological Studies (858-453-4100).

NewportHT70

September 7 & 13, 2010

Newport Medical announced the release of the Newport HT70, their next generation portable ventilator that was developed entirely by Newport Medical at the California headquarters. 

November 21, 2010 (Sunday 9:00 am-2:30 pm). Breathing & Sleep, Salk Institute for Biological StudiesLa Jolla, California (Directions). Download the Breathing & Sleep Symposium brochure. Contact: Gladys Swensrud (swensrud@pacbell.net) or Salk Institute for Biological Studies (858-453-4100).

Photo of Trilogy200

 

August 30, 2010

Philips Respironics announces the new Trilogy200.

(Allow time for pdf to load)

August 23, 2010

Members of IVUN received their fourth issue of Ventilator-Assisted Living for 2010 on August 19th. To become a Member, Download a PDF order form to print and return by mail,or call 314-534-0475. Have a question for “Ask the Experts”? Send it to info@ventusers.org.

August 16, 2010

Whooping Cough Outbreak
A recent whooping cough (pertussis) outbreak in the U.S. (an epidemic in California ) has caused public health officials to recommend booster shoots of the diphtheria, pertussis vaccine (Tdap) to adults 19 and older. Booster shots are recommended every 10 years. Currently there is no whooping cough booster vaccine licensed for people 65 years and older. However, people in this age group should talk to their healthcare provider the risks and benefits of receiving Tdap. Ventilator users of any age should also consult their physician and/or pulmonologist about the pertussis booster vaccine. www.cdc.gov/vaccines/vpd-vac/pertussis/outbreak-faqs.htm

August 10, 2010

Help stop competitive bidding. Competitive bidding, as it is structured now, has the potential to affect users of home mechanical ventilation. It is an attempt by the Centers for Medicare and Medicaid Services (CMS) to control Medicare expenditures for durable medical equipment, including bilevel units aka respiratory assist devices (RADs). Read more ...

July 27, 2010

IVUN's Resource Directory for Ventilator-Assisted Living has been updated.
Note: We had added two new sections:

Respiratory Home Care Companies/DMEs
and In-home Care Agencies.
To be included, send your information to info@ventusers.org

MHS brochure cover and panel showing Gini LaurieJuly 19, 2010

July 26, 2010 is the 20th Anniversary of the signing of the Americans with Disabilities Act (ADA). Join the nationwide celebration! Check American Association of People with Disabilities for history of the ADA, location of events and other ADA resources. Connect with disability groups in your state. The Missouri History Museum ( St. Louis ) created a special exhibit The Americans with Disabilities Act: Twenty Years Later that will be open from June 26, 2010 to June 6, 2011.  Check out the related website – actionforaccess.mohistory.org. PHI’s founder Gini Laurie is featured in the “Independent Living Movement” section. The site and the exhibit include photos from the PHI archives.

July 12, 2010

Photo of Judith Heumann, Annie Barber, Linda Bieniek and Joan Headley at PHI's 10th International Conference

Judith Heumann (left), Annie Barber, Linda Bieniek, Joan Headley at PHI’s 10th International Conference (2009) in Warm Springs, Georgia.

Former PHI Board Member Judith Heumann has been appointed the Special Advisor for International Disability Rights and will lead the Administration’s efforts to develop a comprehensive strategy to promote the rights of persons with disabilities internationally; coordinate an interagency process for the ratification of the Convention on the Rights of Persons with Disabilities; ensure that foreign assistance incorporates persons with disabilities; lead on disability human rights issues; ensure that the needs of persons with disabilities are addressed in international situations; and conduct public diplomacy, including with civil society, on disability issues.

June 13, 2010

Want to know about the Puritan Bennett™ 540 ventilator?
Lifetime Network’s show called "The Balancing Act" featured the Puritan Bennett™ 540 ventilator in a recent segment. Check it out! (Allow time for the file to download ... it's worth the wait!)

June 3, 2010

Two new articles from IVUN:  International Ventilator Users Network (IVUN) releases “Breathing and Sleep Problems in Polio Survivors” and “Tests for Breathing Problems If You Have a Neuromuscular Condition.” Be sure to review these articles, particularly if your healthcare professionals only mention obstructive sleep apnea and CPAP. They might be right, but they might not be right. You may be underventilated and in need of a different breathing device. The second article, “Tests for Breathing Problems…,” describes a routine evaluation for respiratory function which is good for the first evaluation and for later periodic checkups.

May 24, 2010

Attention users of home mechanical ventilation:
Have you completed the "Take Charge, Not Chances" documents? Be prepared. Do it now.

Click to find out more about Take Charge, Not Chances

CLICK LOGO FOR MORE INFO ...

Or, click HERE for Spanish

May 18, 2010

Ventilator user Sandy Stuban was published in the May 2010, Volume 110, Number 5 issue of America Journal of Nursing (AJN) (www.ajnonline.com). Entitled "Home Mechanical Ventilation" with a tag of "Nurses can be the home user's best resource if they become better informed," the article describes basic care, issues of particular concern, as well as Sandy's experience.

May 10, 2010

REMINDER: International Ventilator Users Network (IVUN) coordinates IVUN’s Ventilatory Equipment Exchange to connect people regarding ventilatory equipment.

May 3, 2010

Vent user Richard Wieler was featured on Book TV's "Authors on Writing" talking about his book Chasing Normality. Click to listen to the discussion.

April 25, 2010

Join us in Toronto: On May 1 the Toronto-Peel Post-Polio Support Groups celebrates its 25th Anniversary at the Radisson Hotel Toronto East, Toronto . For details, contact fred.seale@rogers.com or jan.nichols@rogers.com. Speakers include Anthony DiPasquale, RNCP-OHP; Joan L. Headley, MS; Audrey King , MA (Founder of the group); and Angela King, RRT.

April 11, 2010

Compliance letters for flying with a ventilator:

From CareFusion: Certificate of Compliance concerning requirements for personal medical assistive devices (LTV Series Ventilators, LTMII Monitors, SprintPack lithium ion battery) used onboard passenger aircraft. Of twelve airlines contacted by a representative of CareFusion, Air Tran is the only airline to indicate that they will not accept our RTCA-DO 160 certificate of conformance in lieu of an FAA approved label.

From ResMedStatement of FAA Compliance for ResMed Devices and Certificate Regarding Internal Batteries for Specific Devices

From Philips Respironics: Patients traveling with Trilogy100 may be required by their airlines to produce evidence of RTCA/DO-160F certification and to comply with other requirements for traveling with medical devices such as Trilogy100 (Trilogy100 certification.)  Patients should check with their airlines regarding the certification and other policies before attempting to fly with the Trilogy100 ventilator.

April 5, 2010

World Health Day, April 7, 2010

For the first time in history, more than 50% of the world’s population lives in an urban area. This year’s focus is Urbanization and health.

The Theme is 1000 cities 1000 lives

March 25, 2010

IVUN Membership Memo sent. Ventilator-Assisted Living, IVUN's newsletter, will be published bi-monthly in 2010, with the next issue due in April. IVUN will send an IVUN Membership Memo in the alternate months. Not a Member?

March 15, 2010

APRIL 15th-17th, 2010 (15-17 de abril de 2010)
14th International Conference on Mechanical Ventilation (14a Conferencia International sobre Ventilación Mecánica), Ventilator-Associated Damage and Disease-Specific Ventilation (Lesión Asociada con el Respirador y Ventilación Específica) at Hotel Boston – Zaragoza, Spain. The program of the is designed for medical residents and specialists in Critical Care Medicine, Anaesthesiology, Respiratory Medicine, and other specialists with expertise and special interest in acute lung injury and ventilatory support. For more information, go to www.mechanicalventilationconference.com.

DEADLINE EXTENDED : International Ventilator Users Network’s deadline for Phase 1 of proposals for the 2011 $25,000 research award is Wednesday, March 31, 2010. Details are available at www.ventusers.org/res/rfcall.html. If you have questions, call Joan L. Headley at 314-534-0475 or email director@post-polio.org.

March 9 , 2010

DEADLINE EXTENDED : International Ventilator Users Network’s deadline for Phase 1 of proposals for the 2011 $25,000 research award is Wednesday, March 31, 2010. Details are available at www.ventusers.org/res/rfcall.html. If you have questions, call Joan L. Headley at 314-534-0475 or email director@post-polio.org.

February 22, 2010

Sandy Stuban, a member of IVUN’s Consumer Advisory Committee, is featured in a video produced by the VA. Click on The American Veteran and then go to the February 2010 video "Living With ALS.”

Users of bilevel devices, aka respiratory assist devices or RADs, such as BiPAP S/T and VPAP III ST-A, may be affected by the competitive bidding program proposed by The Centers for Medicare & Medicaid Services (CMS) to cut costs for certain durable medical equipment. A meeting of CMS with the Program Advisory and Oversight Committee (PAOC) on February 23, 2010, in Baltimore , Maryland , is scheduled to discuss the Round 1 Rebid and upcoming Rounds of the Medicare DMEPOS Competitive Bidding Program. For more information about the program and the PAOC, go to www.cms.hhs.gov/DMEPOSCompetitiveBid/

February 15, 2010

REMINDER: International Ventilator Users Network’s deadline for Phase 1 of proposals for the 2011 $25,000 research award is Friday, March 5, 2010. Details are available at www.ventusers.org/res/rfcall.html. If you have questions, call Joan L. Headley at 314-534-0475 or email director@post-polio.org.

February 8, 2010

Asking for your help: Have you flown lately while using your ventilator?  If so, please report your experiences to IVUN. IVUN is also looking for volunteers to call the airlines (numbers are listed on this link) to obtain their approved list. All information gathered will be posted on www.ventusers.org. If you want to help, email info@ventusers.org.

January 31, 2010

REMINDER: International Ventilator Users Network’s deadline for Phase 1 of proposals for the 2011 $25,000 research award is Friday, March 5, 2010. Details are available at www.post-polio.org/res/rfcall.html. If you have questions, call Joan L. Headley at 314-534-0475 or email director@post-polio.org.

January 24, 2010

Festival of International Conferences on Caregiving, Disability, Aging and Technology – FICCDAT 2011 will be held June 5-8, 2011 in Toronto, Canada. FICCDAT 2011 will bring together six important and different conferences all focused on enhancing the lives of seniors, persons with disabilities and their family caregivers. The conferences in the festival are Growing Older With A Disability; RESNA/ICTA (Rehabilitation Engineering and Assistive Technology Society of North America); Advances in Neurorehabilitation; Caregiving in the 21st Century; 34th Canadian Medical and Biological Engineering Conference; and International Conference on Best Practices in Universal Design.

All six conferences are now accepting abstracts, which are due December 1, 2010. To learn more about the Festival and the opportunities to present, go to www.ficcdat.ca. Online registration is also available. Early bird registration closes April 1, 2011. When you visit the site, it will ask you to sign up and you will then receive future updates.

January 19, 2010

Ventilator Users: Do you use voice-recognition software? Have you tried several programs? Which do think is the best and why? Send your ideas to info@ventusers.org.

January 11, 2010

Changes in the US Medicare law take effect this month and will allow some Americans who are struggling to pay their prescription drug costs to get extra help. The new Medicare law eases prior requirements in two ways. First, it eliminates the cash value of life insurance from counting as a resource. Second, it eliminates the assistance people receive from others to pay for household expenses, such as food, rent, mortgage or utilities, from counting as income. Also, the application for extra help can now start the application process for Medicare Savings Programs – state programs that provide help with other Medicare costs. These programs help pay Medicare Part B (medical insurance) premiums. For some people, the Medicare Savings Programs also pay Medicare Part A (hospital insurance) premiums, if any, and Part A and B deductibles and co-payments. To learn more about the extra help program go to www.socialsecurity.gov/extrahelp.

January 5, 2010

Happy 2010! Check out this timely (for many of us) article from the
Harvard Health Letter … Out in the cold.

December 23, 2009

Season’s Greetings from the IVUN Board and Staff.
The office will be closed from December 24, 2009 – January 4, 2010.

December 4, 2009

PLVs Discontinued as of 12/31/2009.
Service, etc. expected until 12/31/2014. In late November, Philips Respironics sent a letter announcing the discontinuation of the PLV-100, PLV-102b and PLV-102. If you use one of these products, check out the letter for details. The company is suggesting the Trilogy100 as the replacement product.

November 22 & 30, 2009

Info for Medicare recipients: November 15 Starts Limited Period to Review And Change Plans. Check out this message from the Medicare Rights Center, a national, nonprofit consumer service organization that works to ensure access to affordable health care for older adults and people with disabilities through counseling and advocacy, educational programs, and public policy initiatives.

Check out the US Department of Health and Human Services Centers for Medicare & Medicaid Services Open Enrollment Center.

Remember to utilize the services of your State Health Insurance Information Programs (SHIIP or SHIP).

November 15, 2009

The videos from the Breathing & Sleep Symposium at the Salk Institute held on November 1 are available on line at: www.poliotoday.org.

November 8, 2009

Medical Device Recall: Manual Pulmonary Resuscitator (Single-Patient Use) made by ConvaTec doing business as Unomedical, Inc. has been recalled. Click here to check details ...

November 1, 2009

New from the Department of Transportation – Revised for 2009:  New Horizons: Information for the Air Traveler with a Disability.

October 25, 2009

–Congress enacted the ADAAA on September 25, 2008, and it went into effect on January 1, 2009. Comments are needed on the proposed regulations by November 23, 2009. For more info, check out the site of the Disability Rights Education and Defense Fund.

–FDA has stepped up its campaign to inform consumers of – and protect them against – potential harm associated with unapproved products claiming to diagnose, prevent or otherwise act against the H1N1 flu virus. The Word is Out on Unapproved H1N1 Products

October 18, 2009

Seasonal and H1N1 questions? Go to www.flu.gov. Click on the "People with Health Conditions" to get the facts.

From the Muscular Dystrophy Association: What form of the vaccine does the CDC recommend that people with neuromuscular diseases receive? The injectable H1N1 vaccine. The nasal mist of the H1N1 vaccine contains a live virus and, unlike the general public, individuals with neuromuscular disease are at increased risk of complications from the nasal mist vaccine.

October 12, 2009

UPDATED! IVUN’s Resource Directory for Ventilator-Assisted Living and Home Ventilator Guide (updated 8-16-09)

October 4, 2009

Equipment requests. Can you help?

“I use the iron lung and am looking for foam rubber collars. Some people use the spiral collars, but my equipment isn't designed for them. If you know of any in stock somewhere, please contact info@ventusers.org. They will connect with me.”

“I am looking for an Emerson rocking bed for my brother, who has Pompe Disease. He has one at his home, but we would like one in Florida so he can visit in the winter to get out of the cold. Please contact Russ Galati at russga@msn.com.”

September 27, 2009

Food for Thought from ProPublica: Flu Nightmare: In Severe Pandemic, Officials Ponder Disconnecting Ventilators From Some Patients

cover of Breathing and Sleep brochure

September 13 & 22, 2009

Concerned about sleep and breathing? Use a ventilator?

Make plans to attend "Breathing and Sleep: Solutions for People with Neuromuscular Disorders" to be held November 1, 2009 (Noon-5:00 pm) at the Salk Institute, La Jolla, California.

Registration (available online) is requested for the complimentary half-day program designed for individuals with a neuromuscular condition and their families.

screen shot of Media dis & datSeptember 7, 2009

 

Media dis&dat is a database of news and information about people with disabilities and disability issues maintained by B.A. Haller. The goal is “to use this blog to create a database of media stories on disability topics from around the world.” Bookmark it and check it often.

August 30, 2009

Live in Southern California ? Have a neuromuscular condition?

Announcing "Breathing and Sleep: Solutions for People with Neuromuscular Disorders" to be held November 1, 2009 (Noon-5:00 pm) at the Salk Institute, La Jolla, California. Guest out-of-state speakers include Noah Lechtzin, MD, MHS, FCCP, Pulmonary and Critical Care Medicine, Assistant Professor of Medicine, John Hopkins University School of Medicine, Baltimore, Maryland; and Louis J. Boitano, MS, RRT, RPFT, Northwest Assisted Breathing Center, University of Washington Medical Center, Seattle, Washington. Watch this website for details.

August 23, 2009

INFORMATION FOR PEOPLE WITH DISABILITIES ABOUT H1N1 VIRUS from long-time disability activist and educator Lex Frieden (lex.frieden@uth.tmc.edu) with contributions by Kim Dunn, MD, and Gerard Francisco, MD (The University of Texas Health Science Center at Houston, USA)

August 16, 2009

Check out IVUN's updated Resource Directory for Ventilator-Assisted Living and Home Ventilator Guide.

August 2 and 9, 2009

Have you expressed your opinion about healthcare reform?
Click here to connect with your legislators.

July 26, 2009

DisabilityInfo.gov is now Disability.gov. Check out “Proclamation by the President on the Anniversary of the Americans with Disabilities Act,” which includes the US commitment to sign the United Nations Convention on the Rights of Persons with Disabilities, adopted by the United Nations General Assembly in New York on December 13, 2006. The actual signing of the treaty will take place at the UN headquarters on July 30, 2009 in New York City by Susan Rice, the United States Ambassador to the UN.

July 19, 2009

Long-time PHI/IVUN supporter and member of our Honorary Board Allen Goldberg, MD, Master FCCP, was featured in the Chicago Tribune and the LA Times for his and his wife Evi’s work empowering a homeless man.

Influenza A(H1N1): "Current Situation" to "Advice for Individuals" from the Pan American Health Association.

July 12, 2009

IVUN has posted Ventilator-Assisted Living (Vol. 23, No. 2) on its website – www.ventusers.org. IVUN Members can access the summer issue at http://www.ventusers.org/edu/valnews/mem/VAL_23-2sum09pAll.pdf.

June 29, 2009 & July 5, 2009

Want to Tell Your Story? Do you use an iron lung?
StoryCorps (www.storycorps.org), the oral history and public radio project, has a mission to record the stories of everyday Americans across the country and to archive them in the Library of Congress for future generations. We would love to invite you to record your story with us. Contact Joan L. Headley at info@ventusers.org for details.

June 21, 2009

NEW ...
Request of Users of Noninvasive Ventilation to Complete Survey.

June 7 and 14, 2009

New Air Carriers Access Act and important information about flying with breathing machine. Review the FAQs from the Department of Transportation.

Vent users needing vents during flight denied access on AirTran. READ MORE ...

May 31, 2009

CD of Program Booklets Now Available

Daily program booklets (Thursday–60 pgs; Friday–98 pgs; Saturday–70 pgs) from PHI’s 10th International Conference: Living with Polio in the 21st Century are now available. In PDF format on a single CD, the files contain abstracts and handouts.

Order form & domestic pricing information. Print and mail.

Order form & international pricing information. Print and mail.

May 24, 2009

Memorial Day in the US marks the beginning of summer activities. See and Be Safe offers a variety of reflective strips and other products to help keep you safe.

May 17, 2009

Congratulations to Cindy Bissell, whose son Aaron's breathing problems inspired her to write the Pediatric Tracheostomy Home Care Guide and develop www.tracheostomy.com, was honored with the Mother of the Year Award on Sunday, May 10, 2009.

May 10, 2009

logo for PHI's 10th International Conference, Living with Polio in the 21st Century, April 23-25, 2009

Photo of conference registrants passing photo of Elvis Presley receiving a polio vaccine shot.

"The Spirit of Warm Springs" was evident as the staff at Roosevelt Warm Springs Institute for Rehabilitation (RWSIR) in Warm Springs, Georgia, welcomed 436 registrants during the three-day meeting. In attendance were survivors, family members and health professionals from 11 countries (46 individuals) and 39 states and the District of Columbia. READ MORE ...

May 3, 2009

Thank you

... for attending our 10th international conference: Living with Polio in the 21st Century. IVUN will send a list of participants and evaluation forms in the near future. IVUN will collect the handouts that were not in the program booklets and make them available to attendees. The PowerPoint presentations are the intellectual property of the presenters.

… for presenting at Living with Polio in the 21st Century. The Board and Staff of IVUN received many, many compliments about the quality of the content of the sessions and the interaction among the participants and presenters. The ripple effect will be substantial; lives will be changed.

A special thank you

… to the Staff at Roosevelt Warm Springs Institute for Rehabilitation, led by Greg Schmieg, Executive Director, for their hard work in making the conference a great success. Franklin D. Roosevelt described the peaceful atmosphere and the healing qualities of the area as “The Spirit of Warm Springs.” Everyone in attendance truly felt “The Spirit.”

April 12, 19 and 26, 2009

Due to the 10th International Conference: Living with Polio in the 21st Century, the IVUN office will be closed at the end of the business day (CDT) on Monday, April 20 and reopen at 9:00 am on Tuesday, April 28, 2009.

***

A request from The Christopher and Dana Reeve Foundation. Living with paralysis? Care about the cause? Be counted (http://campaigntocureparalysis.org) ... Literally, place yourself on their map. Show the world how many people are affected by paralysis.

***

The Center for Self-Determination Bi-partisan Call to Transform Medicaid recently helped coordinate a nationwide mail-out requesting signatures on a bipartisan call to reform Medicaid and nearly 1,200 people have responded by signing on. You may access the document by visiting www.centerforself-determination.com/docs/Bi-Partisan.pdf. They are now entering stage two of this grassroots movement to change the very nature of the Medicaid long term care program to make it fairer and more equitable with an end to the institutional bias. They also intend to make the available dollars come under the control of the person who is the beneficiary together with any assistance that person may desire from friends, family and freely chosen allies.

They have set an ambitious goal of 10,000 signatures before the end of April. To learn more and to sign the bi-partisan call yourself, visit www.centerforself-determination.com/signon.html.

March 22, 2009

NOW online, IVUN's Resource Directory for Ventilator-Assisted Living 2009© (pdf), the world's premier resource for linking to experts in home mechanical ventilation.

Listings include: Health Professionals; Ventilator Users, Networking; Ventilator Equipment and Aids; Manufacturers' Addresses; Organizations, Associations and Foundations; Facilities with Long-Term Ventilator Units; Congregate Homes for Long-Term Ventilator Users.

March 15, 2009

jivd logoHave you registered for the
12th International Conference on Home Mechanical Ventilation,
March 27-28-2009 in Barcelona?

Details can be found at www.jivd-france.com.

March 8, 2009

Ventilator user Sandy Stuban, RN, StubanRN@aol.com, is writing an article about circuit changes based on your practices and comments. Can you help by answering these questions?

1. How often do you change your circuits?
2. Do you have a trach or do you use noninvasive ventilation?
3. Who instructed you on how often you should change your circuits?
4. If you clean your circuits, how do you do it?
5. What is your medical diagnosis?

The more responses the better. And RT comments are welcome.

March 1, 2009

Have you checked your entry in IVUN's Resource Directory for Ventilator-Assisted Living? Is it correct? Send your changes to info@ventusers.org.

February 23, 2009

Update (February 23) on lodging information for
"Living with Polio in the 21st Century." Click here for details ...

February 15, 2009

A message from AAPD: The Community Choice Act will be reintroduced soon. Rather than start all over again building the number of cosponsors, we want to have the bill reintroduced with as many initial cosponsors as YOU help us get.

Ask your U.S. Senators and Representative in Congress to become initial cosponsors of the Community Choice Act (CCA).

January 25, 2009 & February 1 and 8, 2009

Do you use a ventilator full or part time? Do you have a spinal cord injury?

IVUN is looking for 6 individuals who are willing to participate in conference call with representatives from a company that is seeking your opinions.

How will it work? After you email your interest to info@ventusers.org, we will send a Pre-Focus Group Questionnaire, with time options for the 1-1/2 hour (2 hours maximum) conference call on February 19th and other relevant materials. The call’s purpose is to gather information to assist the company in making future decisions. Please respond no later than February 13. An honorarium will be provided.

Two focus group sessions have been established for Thursday, February 19th. One is at 10:00 am-11:30am CT and the other is at 3:00-4:30 pm CT. There is room for two individuals on each call. If you are interested, email info@ventusers.org, with a cc to Steve Annunziato (sannunziato@synapsebiomedical.com) at Synapse Biomedical.

image of JIVD brochure for 12th International Conference on Home Mechanical VentilationJanuary 4 & 11, 2009

Deadline Extended:

ABSTRACTS ARE DUE JANUARY 15, 2009 for the 12th International Conference on Home Mechanical Ventilation, March 27-28-2009 in Barcelona.

Click here for the online form ...

December 21, 2008

The Board and Staff of IVUN wish you joy and good health. May we each play a role in making the Earth a better place for all humankind.

Help us reach our fundraising goal to support our work of enhancing the lives and independence of home ventilator users through education, advocacy, research and networking ...

... Donate in honor or in memory of an admired ventilator user. (print and mail)
... Donate in support of this comprehensive website. (print and mail)
... Not a Member? Join IVUN.

December 14, 2008

Internet Study–Health Promotion for Women Aging with Physical Disability: The Baylor College of Medicine Center for Research on Women with Disabilities (CROWD) is testing an online self-help, interactive health promotion program called the "Garden of Wellness." This creative Internet program is designed to increase knowledge about exercise, nutrition, stress management, and the use of health care services; to improve health behaviors; and to reduce isolation and increase connectedness for women with functional impairments. The Principle Investigators are Drs. Margaret A. Nosek and Susan Robinson-Whelen.

Eligibility is being a woman who is at least 45 years of age, who has access to a computer with a high-speed Internet connection about 2-4 hours per week and who likes learning to use computers, and who has had a physical limitation, disability, chronic illness or health condition that limits activities for at least one year. Participants will be randomly assigned to two groups – an online intervention group for 8 weeks or a control group (that will not have access to the program until 6 months later). All participants will complete some surveys and receive payment for participation in either group.

Interested? Reply to cathyc@bcm.edu or call 713-523-0909. CROWD staff will call you back to tell you more about the study and conduct a telephone interview to confirm your eligibility.

December 7, 2008

logoReminder of Deadline:
Abstracts are due December 31, 2008 for the 12th International Conference on Home Mechanical Ventilation, March 27-28-2009 in Barcelona.

Click here for the online form ...

November 23, 2008

Reminder to People with Medicare in the US

Between November 15 and December 31, people with Medicare have the right to change their Medicare private drug plan or enroll in one for the first time. Experts advise people to review their plans even if they are satisfied. The plans change from year to year. (You should have received your Annual Notice of Change by now.)

November 16, 2008

Pseudomonas Infection

I have a pseudomonas infection that continues to flare up when I stop taking antibiotics. When I have taken Cipro orally along with Tobi nebulizer treatments through my tracheostomy, my symptoms have subsided. Both my pulmonologist and infectious disease specialist have told me that it is unlikely that I will ever be able to get rid of this infection; medical articles reinforce this finding. Does any health professional or ventilator user know of a ventilator user who has been able to get rid of this infection? I would appreciate any information and suggestions. Linda Bieniek (lindabieniek@sbcglobal.net)

November 2, 2008

Have you gotten your flu vaccine for this year?

For more details about the vaccine, call CDC at 800-CDC-INFO or visit www.cdc.gov/flu.

To learn where to get a flu vaccine, contact your doctor or local health department.

October 26, 2008

Dr. Forrest Bird, inventor of the Bird Respirator, was honored Saturday evening (October 25) at American College of Chest Physicians annual meeting (Philadelphia). The Chest Foundation has established the Forrest M. Bird, MD, PhD, ScD Endowment in Mechanical Ventilation.

cover of 7 Wheelchairs: A Life beyond Polio by Gary PresleyOctober 19, 2008

Ventilator user and polio survivor Gary Presley's book – Seven Wheelchairs: A Life beyond Polio is now available from the University of Iowa Press and online book sellers.

 

 

October 12, 2008

My son’s insurance is limiting us to the bone on trachs and supplies. I'm constantly on the hunt for Bivona 5.5 ped. uncuffed trachs along with corrugated tubing for his compressor. There are several other things we are either limited on and/or not even covered as far as supplies go. However, the trachs and the corrugated tubing are by far our biggest expense at the moment. Can anyone help? Katrina Malone, Kitts Hill , Ohio , booboo2003@earthlink.net

September 30, 2008

Sharing My Graduation Bill Miller speaking with President Machen on his right.

Bill Miller, vent user due to SCI, graduated with honors from the University of Florida in August, earning a Bachelor of Science degree in business administration on August 9, 2008, in Gainesville, Florida. Congratulations!

photo of Bill Miller leaving the stage

 

September 21, 2008

JIVD issues 1st announcement Call for Abstracts for 12th International Conference on Home Mechanical Ventilation, Barcelona, Spain, March 27-29, 2009. Information about the meeting will be on line by October 15, 2008. For details ...

focus logo

Online registration is now ready for FOCUS Publications' 9th annual FOCUS on Respiratory Care and Sleep Medicine Conference May 14-16, 2009 at the Disney Coronado Springs Resort, Orlando, Florida.

cover of IVUN's Home Ventilator GuideAugust 31, 2008

Check out IVUN's recently-updated Home Ventilator Guide.

Send additions and comments to info@ventusers.org

 

 

August 24, 2008

Coloradans Recall Polio Treatment at Children's

Watch interview of Sunny Weingarten and Dr. Marny Eulberg.

August 17, 2008

Join us at Logo for Roosevelt Warm Springs Institute for Rehabilitation for

Logo for Post-Polio  Health's 10th International Conference
Click for details …
PHI’s 10th International Conference
Pre-Conference Wellness Retreat

August 3, 2008

Vent users and rehab engineers: advice needed

photo of Liz MartinLiz Martin, Scotland, has a complete C3/4 lesion and uses a ventilator 24/7.

She is getting a replacement wheelchair (QUANTUM 600, marketed by Pride Mobility Products Ltd.). The benefits to Liz are its power positioning (tilt and recline) and elevating leg rests.

The National Health Service workshop will make the modifications but has been “unable to resolve a choice and size of the chin controller.”

Here is the issue and request from Liz. “Can anyone suggest a chin controller (company, etc.) that would be appropriate? I am looking for a chin control which will block my forward vision as little as possible. (I want to be able to see where I am going.)”

Please respond to martin_liz@tiscali.co.uk or info@ventusers.org.

July 27, 2008

Focus logoFOCUS Publications announces their 9th annual FOCUS on Respiratory Care and Sleep Medicine Conference May 14-16, 2009 at the Disney Coronado Springs Resort, Orlando, Florida.

For more information call 800-661-5690 or watch www.foocus.com.

July 20, 2008

Have old ventilator equipment in storage?

Have a Monaghan IPPB, a Thompson Bantam, or Emerson Iron Lung not in use? Please contact info@ventusers.org.

July 13, 2008

New section in Resource for Ventilator-Assisted Living

CONGREGATE HOMES FOR LONG-TERM VENTILATOR USERS on page 30 is the newest section in IVUN's Resource Directory for Ventilator-Assisted Living. Want to be added to the list? (International groups are encouraged to respond.) Send the details to info@ventusers.org.

July 6, 2008

Trouble renting a ventilator?

Within the last week, IVUN has received four messages from individuals asking for a home health care company that carries vents. All were told, "We've stopped providing vents to new clients." You can help:

1) If you have had trouble renting a ventilator (bi-level device with backup rate, volume vent, or a combination/multi-mode ventilator) for home use recently, IVUN would like to know the details. Please contact us at info@ventusers.org or 314-534-0475.

2) If you currently rent one of the above devices, please send us the name, address, phone, email and website of the company.

June 29, 2008

From RT FOR DECISION MAKERS IN RESPIRATORY CARE®

Disaster Planning Podcast
Are You Ready? Connect here ...

June 22, 2008

logo of International Conference on Chronic Ventilated Patients in Tel AvivREMINDER: The final program for the June 22-24, 2008, International Conference on Chronic Ventilated Patients in Tel Aviv is online.

Experience with a carry-on oxygen concentrator?

If you use oxygen while flying and have used one of the portable oxygen concentrators, would you please let lindabieniek@sbcglobal.net know?

1) How many liters did you need and how long did the concentrator last for the flight?
2) Did the concentrator fit under your seat? If not, did you have to pay for another seat?
3) Did the airline staff assist you in carrying it on board? Or did you bring it on yourself? Or did a companion carry it on?

image of Home Ventilator GuideJune 15, 2008

IVUN is updating its Home Ventilator Guide and would appreciate receiving your consumer comments about the ventilators you use.

Is it too noisy? Is it too heavy? Is it just right?

Please email your comments to info@ventusers.org. Thanks.

June 8, 2008

logo for PHI's 10th International Conference
Join us in Warm Springs, Georgia, at
Roosevelt Warm Springs Institute for Rehabilitation's logo
for the 10th gathering of the post-polio community
coordinated by Post-Polio Health International.

The extensive program will provide polio survivors tools to live well with the late effects of polio; offer a forum for the exchange of ideas among survivors, families and health care professionals; and explore the history and legacy of the polio epidemics and its survivors. (The conference is scheduled to begin at 1:00 pm on Thursday, April 23, 2009. The final educational session will end at 4:00 pm on Saturday, April 25, 2009, but there will be a social event on Saturday evening.

Hotel accommodations will vary in cost and luxury. Watch www.post-polio.org for details.

Interested in a pre-conference retreat that will go one-step beyond re-rehabilitation and focus on health and wellness? A Post-Polio Wellness Retreat is being planned for Sunday, April 18, 2009 – Thursday, April 23, 2009. It will be modeled after the popular retreats held at Bay Cliff Health Camp in Big Bay, Michigan. Want to know more? Watch the 10-minute DVD "Holistic Health and Wellness Retreat for Polio Survivors."

June 1, 2008

Westpark Healthcare Center (Toronto) requests feedback on a website and two e-modules developed for Respiratory Services at www.ltvcoe.com.

Request a formal feedback form from Audrey King (king.aj@rogers.com) or e-mail your comments directly to her.

May 25, 2008

Confused? What is competitive bidding? DMEPOS Competitive Bidding
Who was awarded the contracts for Round 1? Contract Suppliers - Round 1
Why should users of bilevel devices be concerned?

May 18, 2008

Needed: Zephyr Blower
Check your closets and storage areas. Do you have a Zephyr Blower that is not being used? If so, contact info@ventusers.org ASAP.

May 11, 2008

Stop at the PHI or IVUN exhibit booth (#629) at the National ADA Symposium & Expo Assistive Technology Consumer Fair ...
May 12-13, 2008, America’s Center-Hall 1, Saint Louis, Missouri.

logo for National ADA Symposium & Expo

May 4, 2008

The registration form for the June 22-24, 2008 International Conference on Chronic Ventilated Patients in Tel Aviv is now online. The International Conference on 'Chronic Ventilated Patients Multi-Disciplinary Management from ICU to Home.' Under the auspices of Reuth Medical Center, Tel Aviv, will take place at Dan Panorama Convention Center, Tel Aviv, Israel. Preliminary Program is now on the conference website: Register Now! CONNECT HERE ...

Have a favorite mask that you use for noninvasive ventilation?
Contact info@ventusers.org.

April 27, 2008

New approach to housing in Cambridge, Maryland, for aging polio survivors. From Mary Esther Boyd, Cambridge Harbor Development, LLC (maryestherboyd@comcast.net)

I am looking for "a few good men and women" who might be interested in condominium housing in Cambridge, Maryland that would be constructed specifically for the needs of post-polio persons as well as others with similar needs. My name is Mary Esther Boyd and we have an approved project in Cambridge, Maryland for eight elevator townhouse projects and two cottages across the street from Cambridge Creek.

Our approved townhouses are four stories. The cottages are two stories. Each unit is allotted one parking space and one garage space.

We are proposing to upfit eight units with all the power, back-up power, amenities, and security that would be required to make these comfortable and safe homes for post-polio persons. The two cottages would be reserved for attendants.

A rough estimate of the cost of each of the eight units is $500,000. We are wondering if there are any people possibly interested in this project and, if interested, what amenities and needs would need to be built in. Once we know of at least ten interested buyers we would create an architectural drawing and budget for each unit. After modification we would need permission from the city to modify our existing drawings and, if permission is obtained, we would create commitments from buyers sufficient to obtain proper financing for construction. If financing cannot be obtained there is no obligation to buyers.

Cambridge, Maryland, is near Washington, DC, at the confluence of the Chesapeake Bay and the Choptank River. Two of the leading research institutes nearby are the NIH and Johns Hopkins University. We hope to make this project a model for construction for post-polio syndrome and other neurological diseases and that the experience in the whole process can teach us lessons for the future as we try and meet the needs of these very special groups. We also hope that the proximity to federal and private research and clinical institutions can serve as a motivation for new discoveries for this community.

More about the company: Cambridge Harbor Development, LLC is a small niche development company interested in developing properties not usually of interest to large developers. We have renovated low-income properties in Washington, DC, as well as Cambridge, Maryland, that we have made available to immigrant and Hispanic families unfamiliar with real estate in America. We also have developed waterfront and upscale properties in St. Michaels, Maryland, and Lewes, Delaware. We have a particular interest in neurological conditions as one of our family members has the challenges of post-polio syndrome and one of our cousins suffered from MS. References would be available to any interested buyers. We are hoping that if this small project is successful we may be able to persuade other developers to upfit housing for the neurologically impaired.

April 20, 2008

JIVD 2009: 12th International Conference on Home Mechanical Ventilation will take place in Barcelona, Spain on March 27-28, 2009. The deadline for posters is December 31st, 2008. Contact the JIVD Secretariat (brigitte.hautier@free.fr) for more details.

April 13, 2008

Are you a vent user? A family member or attendant of a vent user? Have you completed your Take Charge, Not Chances portfolio? Need advice?

April 6, 2008

“Out from Under: Disability, History and Things to Remember” will be on exhibit at the Royal Ontario Museum (Toronto) from April 17 to July 13, 2008.

March 30, 2008

Are you a man living with spinal cord injuries? Participants are needed for an online research study. Questions? Contact Shaun Burns, PhD, Post-Doctoral Fellow, VA Boston Healthcare System at shaun.burns@va.gov.

March 16, 2008

You’re invited!

"Hope and the Human Spirit – Overcoming Polio" is the title of an exhibit at the Reno County Museum, Hutchinson, Kansas, opening March 29, 2008 from 1:00 pm – 4:00 pm. The exhibit is in partnership with the Central Kansas Polio Survivors Group, led by ventilator user and polio survivor Jean Graber. For details email jgraber3@earthlink.net or call 620-662-1184. From The Hutchison News

March 9, 2008

The Research Fund: IVUN received seven Phase 1 grant proposals representing three countries (Canada, Italy and the United States). IVUN will notify the applicants by April 14, 2008 if they are invited to send Phase 2 information, which is due June 16, 2008.

March 2, 2008

Ventilator-Assisted Living (Vol. 22, No. 1) is at the printer. The spring issue will be mailed soon to all Members of IVUN.

Do you have an extra Bennett IPPB AP5 breathing machine? If so, contact, Cindy at poisonchoick93@yahoo.com.

February 24, 2008

Reminder: Phase 1 proposals for The Research Fund must be postmarked Monday, March 3.

February 17, 2008

Do you have a favorite mask?

IVUN is gathering information about favorite masks for new users. We ask experienced users to send a list of reasons for liking a particular mask to info@ventusers.org by April 1.

February 10, 2008

IVUN connected with the creator of this interesting blog: The Pandemic Ventilator Project

January 27, 2008

The International Conference on Chronic Ventilated Patients, Multi-Disciplinary Management from ICU to Home. Under the auspices of Reuth Medical Center Last Call for Abstracts: 30 January, 2008

Conference Website: www.congress.co.il/ventilation-reuth08

January 20, 2008

Looking for cuirass and motor for exhibit at the Royal Ontario Museum. Will pay shipping. Karen Yoshida and Audrey King helped create an exhibit that will be on display for eight weeks starting in March. The chest cuirass and motor used in the display were borrowed and need to be returned. They anticipate that the entire exhibition may travel elsewhere and they’d really like to have their own. Contact Audrey King at akingrrt@pulmonetic.com.

January 13, 2008

IVUN Members: If you received a note in the USPS about the last issue of Ventilator-Assisted Living (Vol. 21, No. 4) and have not responded, please do so this week. Thanks.

January 6, 2008

Do you use “Suction catheter kits”, 14 Fr, item # 37424 made by Kendall? A vent user in Saint Louis, Missouri, USA, was mistakenly given 500 sterile suction catheter kits. Shipping costs negotiable. Contact Colleen Kelly Starkloff at cstarkloff@starkloff.org.

December 30, 2007

Our offices will be closed New Year's Day 2008.

IVUN sends best wishes to its Members, Friends and Supporters and reminds everyone that the DEADLINE FOR PHASE 1 for the Call for Proposals for The Research Fund for Post-Poliomyelitis and Neuromuscular Respiratory Research is Monday, March 3, 2008.

December 23, 2007

IVUN's newly updated 2008 Resource Directory for Ventilator-Assisted Living has been mailed to all members at the Contributor and all Sustainer levels – and it is now updated on our website.

The Resource Directory lists Health Professionals, Ventilator Users' Listservs, Ventilator Equipment and Aids with Manufacturers' Addresses, Organizations, Associations and Foundations, and Facilities with Long-term Ventilator Units. For more information ...

IVUN's offices will be closed from 12:00 noon CDT on December 21 until 8:00 am CDT on December 26, 2007.

December 9, 2007

IVUN's newly updated 2008 Resource Directory for Ventilator-Assisted Living is being mailed this week to Members at the Contributor and all Sustainer levels. The Resource Directory lists Health Professionals, Ventilator Users' Listservs, Ventilator Equipment and Aids with Manufacturers' Addresses, Organizations, Associations and Foundations, and Facilities with Long-term Ventilator Units. For more information ...

November 18, 2007

Special Edition of Ventilator-Assisted Living at printer. The Winter issue, (Vol. 21, No. 4) will feature the Take Charge, Not Chances portfolio created to assist ventilator users in facing medical emergencies. Members: watch your mail boxes for your 20-page special edition during the Holiday deluge.

November 11, 2007

IVUN's Annual Report for 2005/2006 is now online.

November 4, 2007

IVUN announces Take Charge, Not Chances Portfolio funded by the Christopher and Dana Reeve Foundation.

October 28, 2007

IVUN's Fifth Research Grant: Call for Proposals
Are you a researcher with innovative ideas?

October 21, 2007

Margaret Pfrommer Memorial Lecture in Long-term Mechanical Ventilation

The ACCP Home Care NetWork is highlighting the Margaret Pfrommer Memorial Lecture in Long-term Mechanical Ventilation at CHEST 2007. Dudley Childress, PhD, a world-respected leader in bioengineering, will present his lecture, "Let Their Air Prevail and Their Hearts Endure."

Working with Margaret Pfrommer, Dr. Childress developed devices that permitted people with disabilities to live independently in their homes and communities. These devices now benefit people all over the world. Margaret Pfrommer, a postpolio survivor, required long-term noninvasive ventilation during most of her life. Ms. Pfrommer and Dr. Childress worked together to develop early innovations for the application of this technique.*

The Margaret Pfrommer lecture is an annual event with the honoree chosen by the ACCP President. In the past, it has honored world leaders and innovators in long-term mechanical ventilation, home care, and critical care. The lecture is a featured educational offering of the ACCP Home Care NetWork.

Please join the members of your NetWork, and other CHEST 2007 attendees, from 2:00 PM - 3:00 PM on Wednesday, October 24, 2007, in the Convention Center, E350.

Dr. Childress is Professor Emeritus of Biomedical Engineering and of Physical Medicine and Rehabilitation in the McCormick School of Engineering and Feinberg School of Medicine, Northwester University , Chicago , IL . He is Executive Director Emeritus of the Rehabilitation Engineering Research Program, the Prosthetics Research Laboratory, and the Prosthetics and Orthotics Education Program at Northwestern. His research and development activities are concentrated in biomechanics, human walking, artificial limbs, ambulation aids, and rehabilitation engineering, which includes the design and development of modern technological systems for amputees and other disabled people. Dr. Childress is the recipient of numerous honors and awards, among them, the Paul B. Magnuson Award from the Department of Veterans Affairs Rehabilitation Research and Development Service and the da Vinci Lifetime Achievement Award from the Michigan Chapter, Inc. of the National MS Society. He serves on the editorial board of the DVA Journal of Rehabilitation Research and Development.

This award was established in 1999 by Dr. Eveline Faure and Dr. Allen I. Goldberg to honor their lifelong colleague and friend, Margaret Pfrommer, a postpolio survivor and patient advocate. It was established to ensure that individuals, who use mechanical ventilation, and their families, can work more effectively in partnership with members of their healthcare team.

*Goldberg AI, Cane RD , Childress DW, Vesely LC, Pfrommer M. Combined nasal intermittent positive-pressure ventilation and rocking bed in chronic respiratory insufficiency-nocturnal support for a disabled person at home. Chest 1991; 99:627-629

Supported by The CHEST Foundation.

email: networks@chestnet.org
web: www.chestnet.org

Call for Abstracts for The International Conference on Chronic Ventilated Patients (June 22-24, 2008) in Tel Aviv

The Reuth Medical Center and Israel Society of Internal Medicine are coordinating The International Conference on Chronic Ventilated Patients Multi-Disciplinary Management from ICU to Home in Tel Aviv at the Dan Panorama Hotel, June 22-24, 2008. For details about the program, faculty and to submit an abstract go to www.congress.co.il/ventilation-reuth08/. The deadline to submit abstracts is January 15, 2008.

Exhibit Unveils Hidden History of Disabled People’s Experiences

Photo of Audrey King (front) and  Karen Yoshida contributors to the “Breathing” panel of exhibit showing a chest shell and respirator equipment from the pastToronto, Oct. 17, 2007 – A child’s trunk. A pile of 16 neatly folded grey sweat suits. A Canadian flag. On their own, they may not have anything in common. But together, they are a part of a unique exhibit that illustrates the hidden history of disabled people’s experiences and their struggle for equal rights. This is the first exhibit of activist disability history to be held in Toronto .

WHAT: Exhibit – Out From Under: Disability, History and Things to Remember

WHEN: Thursday, Oct. 25 to Tuesday, Oct. 30, 7 pm to 10 pm (Oct. 25 only for opening night). 10 am to 4 pm (Oct. 26 to Oct. 30)

WHERE: Columbus Centre, 901 Lawrence Avenue West, Toronto, Canada

FOR MORE INFO: Suelan Toye, Public Affairs, Ryerson University, Office: 416-979-5000 ext 7161, stoye@ryerson.ca

The exhibit includes information about the work of Reverend Roy Essex, who selflessly contributed as a volunteer to polio survivors from the 1930s and ‘40s. One of his significant contributions was that he serviced the respirators of those he visited.

October 14, 2007

IVUN’s Board Chair featured in Roanoke Times

Board Chair featured as PHI's WE'RE STILL HERE week (Oct 14-20, 2007) begins.
www.roanoke.com/news/roanoke/wb/135733. Check out the audio gallery, too.

The ALS Association Fights to Preserve the Ability to Access Power Wheelchairs …

On September 25, The Association arranged for two people with ALS to appear at a Capitol Hill press conference convened to urge Congress to pass the “Medicare Access to Complex Rehabilitation and Assistive Technology Act (HR 2231). For details go to www.alsa.org/news/article.cfm?id=1171.

September 24, 2007

New Noninvasive Ventilator: BiPAP® AVAPS™

BiPAP® AVAPS™ is Respironics’ newest noninvasive ventilator. AVAPS is short for Average Volume Assured Pressure Support technology and “provides an average target tidal volume by automatically adapting pressure support to meet the patient’s needs.”

The press release issued September 19, 2007 also states ...

With the BiPAP AVAPS home ventilator, clinicians no longer have to choose between pressure or volume ventilation because the device has the comfort of pressure ventilation and the consistent clinical efficacy of delivering a target tidal volume, all in one compact and lightweight machine. “Patients deserve efficient and comfortable noninvasive ventilation, and we designed the BiPAP AVAPS ventilator specifically with that in mind,” says Elaine Lesnak, US marketing manager, Respironics Home Respiratory Care group. “This device is ideal for treating respiratory insufficiency caused by progressive neuromuscular disorders. AVAPS combines the comfort and leak compensation of a pressure mode with the safety of a guaranteed volume.”

Utilizing Digital Auto-Trak™ Sensitivity, AVAPS estimates the patient’s target tidal volume with each breath and compares it to the desired target tidal volume. If the patient is not achieving the target tidal volume, AVAPS recognizes it and gradually changes the inspiratory pressure so that the patient can breathe more comfortably and achieve synchrony. Because the pressure increase is smooth, patient comfort and safety are never compromised.

Weighing 4.2 pounds, the BiPAP AVAPS noninvasive home ventilator is simple to operate, offering a straightforward user interface and an integrated heated humidifier that allows for easier set-up and management. It also comes with built-in alarms and Respironics Encore SmartCard® technology.

“The BiPAP AVAPS ventilator is packed with features. It automatically adapts to the changing needs of patients, improves ventilation efficacy and patient comfort, guarantees a minimum ventilation and simplifies the titration process. Respironics is proud to bring this device to our domestic market to better suit the needs of patients suffering from restrictive lung diseases,” says Lesnak.

If you are a ventilator user who is trying the BiPAP® AVAPS™, IVUN invites you to describe your experience with the device.

September 17, 2007

Vent user seeking ideas/models ...

Audrey King, ventilator user and polio survivor, will be attending a meeting in late September that will develop an action plan for Ontario 's "long-term ventilation strategy." The day will include a discussion of the ethical issues involved in serving vent users and of ideas to improve accessed, coordination of care and quality of life considerations. To send King your thoughts and/or descriptions of successful models of homecare for ventilators users, email her at king.aj@rogers.com.

September 3, 2007

The fall issue of Ventilator-Assisted Living (Vol. 21, No. 3) has been printed and will be mailed this week to Members of International Ventilator Users Network (IVUN).

Connect here for a listing of past issues of Ventilator-Assisted Living.

August 27, 2007

Province of Ontario is looking for models of care and service for people who use long-term ventilation along the continuum of care.

The basic request is for other jurisdictions, nationally or internationally, who have a coordinated and integrated strategy for long-term ventilation to send information as to “how it works.”

They also are looking for persons who may be able to provide a systems perspective for the care of people requiring long term ventilation.

IVUN asks you to assist by sending links, suggested literature, thoughts and comments to:
Carol Ross RN Med, Project Support, Toronto Central Local Health Integrated Network, 416-469-6580, ext 2573, carolr@tegh.on.ca.

August 20, 2007

IVUN just received copies of "Long-term Ventilation in the Home: A Question of Choice" from Rita Troini, RRT, MA, Training and Development Consultant, National Program for Home Ventilatory Assistance (NPHVA), McGill University Health Centre (MUHC), Montreal, Canada.

Cover of English version of Long-term Mechanical Ventilation in the Home: A Question of ChoiceOne booklet targets families, the other is written for clinicians. Both are published in French and English. Troini states, “The production of these booklets Cover French version of Long-term Mechanical Ventilation in the Home: A Question of Choiceresults from a specific need that was identified in a study published in 2006 (See Carnevale, F.A., Alexander, E., Davis , M., Rennick, J.E. and Troini, R. Daily living with distress and enrichment: The moral experience of families with ventilator-assisted children at home. Pediatrics, 117(1), 48-60.) The goal is to disseminate the actual testimonials of families.”

If you would like to order booklets, please contact Troini at rita.troini@muhc.mcgill.ca.

August 6, 2007

IVUN Helps Illinois Lady Find Rocking Bed

Dear IVUN: We in the process of helping a disabled woman relocate and she currently has an Emerson Rocking Bed produced sometime in the 50's or 60's that is approximately 76" long. We are afraid that the bed might not survive the move and are desperately trying to find her a replacement. The woman has also tried other beds and cannot stand the pain caused by the change. Obviously with the bed being so old it is proving quite the task.

We were wondering if perhaps you could help in providing any leads in finding a rocking bed to replace the current one. I don't know if you perhaps know of any hospitals that may have ones not in use anymore that may be available for purchase for example. –Mr. Dimas

Dear Mr. Dimas: IVUN suggests you contact Mr. Rozier, whose father died recently and so they family has three rocking beds to sell or donate. Please contact him directly and be sure to let IVUN know what happens. –IVUN

Dear IVUN: I just wanted to update you on the status of the rocking bed. We just heard back from Mr. Lozier today regarding the bed, and we are going to purchase it and it will be shipped shortly. Thanks again very much for your help. –Mr. Dimas

Check out IVUN’s Ventilatory Equipment Exchangehttp://www.ventusers.org/net/ventexch.html

July 30, 2007

Celebrating Dr. Augusta Alba …

Coler Goldwater Specialty Hospital and Nursing Facility, New York City, celebrated "50 years of dedicated service to its patients and residents” by Dr. Augusta Alba and Dr. Masayoshi Itoh on July 19th, 2007.

Dr. Alba’s dedication and service to the numerous polio survivors and ventilators users around the world and to Post-Polio Health International and is legendary.

Won’t you send your note of congratulation and thank you to Karen.Gooding@nychhc.org or mail a note to Dr. Augusta Alba, Coler Goldwater Specialty Hospital, 1 Main St Rm E3-3, Roosevelt Island, New York, 10044.

July 9, 2007

Remember the hands-free automated loud- speaker telephone?

In 1948, Walter H. Shaw developed a hands-free automated loud-speaker telephone and received a US Patent (2844659) for it in 1958. His son is writing a book about his father and his work, partly because Bell Labs would not allow his father’s invention to be connected to their phone lines. Part of the “resolution” was that Inventor Shaw had to donate 200 of the devices to the “Iron Lung Society.”

Walter Shaw, the son, is asking for our help in finding an article (or printed material) that he believes was published in a polio newsletter. The article was about his father and the device with an accompanying photograph of a lady in an iron lung using the phone and his father standing next to her.

IVUN has searched its old Toomey Gazettes and did not find the article.

If you have knowledge of the “Iron Lung Society’ or the photograph, please call Walter Shaw ( Florida ) 954-567-0176.

July 2, 2007

IVUN Information Specialist, Judith R. Fischer and Joan L. Headley, Executive Director of IVUN, attended the June 22-24, 2007, Noninvasive and Home Mechanical Ventilation: ICU and Beyond 2007 in Montreal , Quebec, Canada. The well-sequenced course presented by an expert faculty included smaller, interactive sessions and was attended by 200 physicians and their pulmonology/respiratory team members. Unfortunately, only a small handful of ventilator equipment manufacturers exhibited their products.

Three ventilator users – Bernard Gaudon, Villeurbanne, France; Barbara Rogers, New York, New York; and Maria Mastracchio, Montreal , Quebec – joined some of the sessions. They were invited to a focus group Friday evening to discuss the logistics and content of the meeting.

IVUN Members who participated in the televisit focus groups (2006) and in the IVUN sexuality survey (2006) will be glad to know that their opinions were incorporated into two of the sessions – Sex and the Ventilator User (and Other Topics): The Patient’s Perspective (Barbara Rogers and Angela King, RRT) and Role of Tele-Health in Long-term Ventilatory Management (Allen Goldberg, MD, Master FCCP, Rita Troini, RRT and Eric Wrazen).

We have contacted the organizers of the meeting at the American College of Chest Physicians (ACCP) to find out how you can find out how you can purchase tapes/CDs of the conference.

Back to Top