Annual Report 2003

Highlights of 2003

"Thank you so much for the work you do. It has been great to finally find a source of information that is based on fact and real experience. It is a comfort to know that your organization exists to share information." Polio survivor, USA

"My daughter has been a ventilator user for 12 plus years now and the support of information through this network is tremendous. We are going to Paris next month and am feeling able to undertake this adventure because of the info from IVUN and the contacts we make as a result of the info from you." Mother of a ventilator user, USA

"Your publication is an important instrument to spread new and better solutions to our technical and medical problems, but to also remind people that, despite hoses and cables, we are profoundly ordinary people with the same needs of recognition, respect and love, fully capable of living in the community, if given the right support in terms of medical and technical backup, and personal assistance." Polio survivor and ventilator user, Sweden

collage of publications by PHI1. In June of 2003, Gazette International Networking Institute (GINI) announced its new name - Post-Polio Health International (PHI). The new name reaffirms our ongoing interest in international issues and projects the broadest meaning of "health," encompassing the physical, emotional, social, psychological, and spiritual aspects of individuals' lives.

Post-Polio Health International (PHI) will continue to respond to the needs of all ventilator users through its affiliate, International Ventilator Users Network (IVUN). Historically, the first ventilator users were polio survivors who had used iron lungs. Now, a growing number of people with a variety of conditions use home mechanical ventilation.

The newsletters were renamed Post-Polio Health, replacing Polio Network News, and Ventilator-Assisted Living, replacing IVUN News. PHI compiles the print and online Post-Polio Directory. IVUN compiles the Resource Directory for Ventilator Assisted Living.

PHI granted 65 permissions to reprint articles from its publications in 2003 from four countries for 11 states and eight provinces.

"I just wanted to tell you that my membership, with its mail-outs to me, is invaluable.." polio survivor, USA

"I have finished reading "Don't Die on My Shift" and I owe you a world of thanks for lending it to me. I am sure I will get a good grade on this paper I must write on the subject." student, USA

2. Post-Polio Health International became a membership organization in mid-2003, offering five levels, ranging from the $15 Supporter Membership to the $125 Sustainer Membership. The mid-range memberships ($25 Subscriber and $45 Subscriber Plus) offer the newsletters as a benefit, while the $75 Contributor Membership offers the directories and discounts on PHI and IVUN activities.

3. The Medical Advisory Committee of Post-Polio Health International, led by Frederick M. Maynard, MD and Martin B. Wice, MD, wrote A Statement about Exercise for the Survivors of Polio that was endorsed by 29 post-polio experts. The statement was published in May of 2003 in Post-Polio Health (Volume 19, Number 2).

The Medical Advisory Committee critiqued the new ruling for post-polio sequelae for the Social Security Administration. The new ruling became effective July 2, 2003.

Judith R. Fischer, editor of Ventilator-Assisted Living, and Linda L. Bieniek, board member and ventilator user, co-authored "Making the Skies Friendly for Ventilator Users" published in the April 2003 (Volume 12, Issue 4) ADVANCE for Managers of Respiratory Care.

"I am delighted I have found your website, and I have already gathered much valuable information, which is helping me to understand the problem with LEP (late effects of polio)." polio survivor, Ireland

4. Website Visits in 2003

chart showing website visits in 2003

5. Number of New Contacts in 2003

chart showing new Contacts in 2003

6. Conferences and Meetings of Staff and Board

APRIL: Joan L. Headley, Executive Director, attended Advisory Board Meeting of Center for Accessible Society, San Diego, California.

MAY: Board members Frederick M. Maynard, MD, and Judith E. Heumann, Advisor, Disability and Development, World Bank, presented at the New Jersey Polio Network annual conference.

Judith R. Fischer, editor of Ventilator-Assisted Living and board member represented IVUN at the American Thoracic Society annual meeting in Seattle, Washington.

JULY: Peter and Serena Jay at the CDMSP of Barbara Duryea, Joan Headley and Peter Jay at Johnstown's Rotary noon luncheon.Joan L. Headley, Executive Director, taught the "Healthy Living with a Chronic Disease" at a five-day educational retreat sponsored by Conemaugh Health System, Johnstown, Pennsylvania.

Joan L. Headley, Executive Director, spoke at the Johnstown Rotary noon luncheon with Peter Jay, British Polio Fellowship.

AUGUST: Linda L. Bieniek, Board Member, presented at Abilities Expo Chicago Metro. Staff members Joan L. Headley, Executive Director and Justine Craig-Meyer, Assistant to Executive Director, exhibited at the same meeting.

SEPTEMBER: Joan L. Headley, Executive Director and Justine Craig-Meyer, Assistant to Executive Director, exhibited at the first Assistive Technology Consumer Fair in Saint Louis.

NOVEMBER: Several IVUN volunteers participated in the Ninth International Conference: Noninvasive Ventilation from the ICU to Home, sponsored by ACCP in Orlando, Florida.

Editor of Ventilator-Assisted Living and board member, Judith R. Fischer was a member of the planning committee, and was instrumental in coordinating the ventilator users' sessions. She also represented IVUN at CHEST, the ACCP annual meeting, held during the same week and represented IVUN as an allied health member of American College of Chest Physicians (ACCP) Home Care NetWork Steering Committee.

Linda Bieniek and Bill Miller in OrlandoBoard member and ventilator user Linda L. Bieniek and Bill Miller, Consumer Advisory Committee, presented "Intimacy and Sexuality and Long-Term Mechanical Ventilation."

The following Consumer Advisory Committee members also presented Audrey King, MA, discussed home care and long-term ventilator users with her colleague, Dina Brooks, PhD. The basis of their discussion was the results of our first research fund award - Ventilator Users' Perspectives on the Important Elements of Health-Related Quality of Life. Laura Hershey discussed "Empowerment and Advocacy."

Board member and ventilator user, Larry Becker, PhD, thoughtfully discussed "Transitions: From Middle Age to Elderly."

Joan L. Headley, Executive Director, participated in the Missouri Foundation for Health Advocates Retreat, Jefferson City, Missouri.

"We apologize for our slowness in sending you this photo with the scooter. All is now well, scooter is working fine, she is delighted, and we have made the ramp shown in the photo, and she is mobile." husband of polio survivor, Thailand.

Sunan Willcox with her scooter7. PHI received a grant from Chicago-based Special People in Need (SPIN) to assist polio survivors and ventilator users in need of funds to purchase a scooter. Six individuals received $500 each towards a scooter that assists them in living independently.

"The generosity of the participants, and their interest in and appreciation for our work is so important to us - really, it breathes life into all of those numbers." Claire Kalpakjian, PhD, University of Michigan Medical Center, Ann Arbor

8. The Research Fund

The Second Grant Award

Over 1,200 polio survivors completed the surveys for the research project - "Women with Polio: Menopause, Late Effects, Life Satisfaction, and Emotional Distress." PHI's second research grant was awarded to a team of researchers from the University of Michigan Medical Center, led by Claire Kalpakjian, PhD.

The primary objective of the study was to explore the relationship between menopause and late effects for women with a history of polio. Similarly, little is known about the interaction of physical disability and menopause. In an effort to highlight the unique contribution of menopause, men with a history of polio serve as a control group.

The final report will be disseminated in early 2004.

The Value of The Research Fund

The $25,000 for this second award was given from the interest on the generous donations to The Research Fund, an account separate from our operating fund.

The corpus of the fund increased from $309,000 to $345,000 in 2003.

Continued ...

To beginning of Annual Report 2003


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