This week at IVUN ...
June 29, 2008
From RT FOR DECISION MAKERS IN RESPIRATORY CARE®
Disaster Planning Podcast
Are You Ready? Connect here ...
From prior weeks at IVUN ...
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.
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?
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.
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.
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.
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.
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 ...
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.
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.
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.
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.
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.
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.