This week at IVUN ...
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.
From prior weeks at IVUN ...
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
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.
September 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.
NEV-100 available. If you are in need of an extra NEV-100 (Respironics), please contact info@ventusers.org. This specific device is in good working order but is in need of service. It is available for free. NEV-100s are used with chest shells (cuirass) and Porta-Lungs.
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.
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
"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
... 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.
… 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.
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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
Have 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.
January 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
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
Reminder 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.
October 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,
September 30, 2008
Sharing My Graduation 
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!
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 ...
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.
August 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 
for
Click for details …
PHI’s 10th International Conference
Pre-Conference Wellness Retreat
August 3, 2008
Vent users and rehab engineers: advice needed
Liz 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 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
REMINDER: 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?
June 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
Join us in Warm Springs, Georgia, at
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.
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
Toronto, 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.
One booklet targets families, the other is written for clinicians. Both are published in French and English. Troini states, “The production of these booklets 
results 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 Exchange – http://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.