The Huntington's Disease Society of America (HDSA)
Northeast Ohio Chapter was established in 1977 as a Chapter
of the Committee to Combat Huntington's Disease (CCHD). CCHD
was the National organization formed by Marjorie Guthrie to
increase research funding for Huntington's Disease (HD) and
to assist people affected by HD, the ailment responsible for
the death of her husband, legendary folk singer Woody Guthrie.
The Chapter followed Marjorie's lead and committed itself to
programs dealing with Awareness, Research, Education and Advocacy
(AREA programs).
In 1982, five years after its funding, the Chapter
hosted a National CCHD convention in Cleveland. Attendees included
representatives from the National Institutes of Health, the
National Health Council, the Huntington Society of Canada,
the Hereditary Disease Foundation, HD families, professionals
and community leaders. This convention, the last one attended
by Marjorie Guthrie, was the first to feature workshops and
scientific symposia, which are standard elements at current
National HDSA conventions.
In 1983, after Marjorie Guthrie's death, CCHD
adopted a new name, the Huntington's Disease Foundation of
America (HDFA). At that time there were two National HD organizations:
HDFA and the National Huntington's Disease Association of America
(NHDA). In 1986, HDFA and NHDA merged and became the Huntington's
Disease Society of America (HDSA) which is the only current
National family-oriented HD organization. Locally, community
outreach and media attention attracted more and more HD families.
The Chapter proudly played an important role in the affairs
of the National organization when, in 1991, the Chapter hosted
a memorable meeting of the HDSA Executive Committee in Cleveland.
A glitch in Chapter operations, however, occurred
in 1992. After fifteen years of successful activities, there
were not enough volunteers who had the time and energy to perform
the myriad tasks necessary to keep the Chapter moving ahead.
As a result, the Chapter turned in its charter and submitted
the money it had in its bank account to the HDSA National Office.
Chapter members were asked to send their donations directly
to the National Office in New York.
Spearheaded by Christine Paternoster, a few
volunteers continued the support group meetings and provided information
to HD families. These efforts were aided by the local Federation
for Community Planning, other agencies and a dedicated medical
advisory group. Support for the HD cause was continued by Adora
Stout of Stow, Ohio and her children who held highly successful
events in their community, events that are still held and increased
each year.
An individual honor was bestowed on a National
and local HDSA leader in 1995 when the National HDSA Board
selected Eva Weissman to receive the Marjorie Guthrie Award,
the most prestigious award presented by HDSA for outstanding
service to the HD community.
Determined to have a functioning Northeast Ohio
Chapter again, the original Chapter's charter members, David
Waltermire and Eva Weissman, were able to form an energetic
Board of Directors and a new charter was received from HDSA
in 1996. The Chapter flourished and at subsequent National
HDSA conventions, the Chapter received awards for chapter and
board development. For her first visit to a local chapter,
the then-new National Executive Director/CEO, Barbara Boyle,
selected Northeast Ohio. During her visit she participated
in a radio program and made an audio
recording which is available on the Chapter's website at www.lkwdpl.org/hdsa.
That website is maintained by the Lakewood
Public Library as a community service.
In 1997, the Chapter was host of an HDSA Regional
Conference with participants from near and far. Kim Paternoster,
a young Chapter member, received an honor plaque in recognition
of her courageous efforts to cope with HD. Since then the Chapter
staged seminars, symposia, workshops, fund raising and education
events in Akron and Cleveland to promote HD Awareness, Research,
Education and Advocacy, still known as AREA programs.
Now in 2000, the HDSA Northeast Ohio Chapter
is an integral part of the growing National network of HDSA.
It is the Chapter's aim to increase the care available for
HD families and to help find the cure for Huntington's Disease
by increasing financial support for HD research. One of the
Chapter's long term goals is to have an HDSA Center of Excellence to
help the HD families in Northeast Ohio even more.
The HDSA Northeast Ohio Chapter Board commends
the HD families, physicians and scientists, contributors,
community leaders and all others involved in linking CARE
and CURE.
October 2000
