|
|
 |
 |
About the Scleroderma Foundation
The Scleroderma Foundation is the national organization for
people with scleroderma, their families and friends. It was
formed January 1, 1998 by a merger between the West coast-based
United Scleroderma Foundation and the East Coast-based Scleroderma
Federation.
The Foundation is a nonprofit membership organization with
IRS 501c(3) status. It has a national office in Danvers, Mass,
and 21 chapters and 175 support groups dedicated to carrying out
its three-fold mission of support, education, and research.
The Foundation is staffed by individuals whose functions
include general management, development, communications, patient
education, etc. The executive director reports to a 12-person
Board of Directors comprised of medical practitioners,
local chapter personnel and persons interested in scleroderma.
The Foundation also relies on the expertise of its Medical
Advisory Board. Board members are distinguished researchers
and clinicians in scleroderma and related fields.
The Scleroderma Foundation funds at least $1 million of
new grants each year to find the cause and cure for scleroderma. |
 Research
While the foundation provides support and education to patients
and promoting awareness to the media and the general public,
its primary function is to fund research
for the disease which has no cure. As the leading nonprofit
supporter of scleroderma research, the Foundation allots more
than $1 million annually to find the cause of and cure for
scleroderma. Since 1989, nearly $12 million in research funds
has been allotted.
Currently, the foundation budgets about $1 million annual
for research funding – its largest single expense. Its
Peer Research Review Committee, composed of scleroderma experts
from around the world, helps determine which proposals will
be funded each year by reading, critiquing and ranking all
applications. The research proposals are the end product of
an open process that features national competition.
Thanks to recent advances in research and treatment, scleroderma
patients as a group can now expect to live longer and more
productive lives—with increased hope for the future.
A cure for scleroderma, however, remains an elusive goal.
Research costs continue to climb. Modern laboratory staff,
equipment and supplies are expensive. Laboratories and clinical
research programs must look outside their own facilities for
financial support.
The National Institute of Arthritis and Musculoskeletal and
Skin Diseases (NIASMS), a part of NIH, provides funding for
the majority of scleroderma research. Although NIH grants
to Scleroderma researchers have increased in recent years,
Scleroderma funding is still a relatively low priority.
The Scleroderma Foundation has a critically important role
as a catalyst—to fund and to stimulate new research
and new ideas.
The Scleroderma Foundation is enlisting the support of legislators
and other decision makers to establish a higher profile for
scleroderma and the needs of patients. The key to all of our
efforts—to ensure that productive research moves forward—is
the continued generosity of our individual and corporate donors.
|
Support
The second component of the foundation’s mission is
support.
The foundation accomplishes this task by helping patients
and their families cope with scleroderma through mutual support
programs, peer counseling, physician referrals and educational
information. A toll-free number, (800) 722-HOPE gets people
living with scleroderma the first step toward information.
Throughout the United States and beyond, the foundation has
established 21 chapters and 175 support groups to help patients
and their families manage their disease. Chapters are run
by paid staff through foundation. Members of each individual
chapter pay $25 to the foundation. Support groups are affiliated
with chapters in their area, or are not. Unaffiliated groups
receive training, materials and support from the foundation
as needed.
Foundation
members are entitled to benefits with their yearly
dues (reword), including a subscription to a quarterly magazine,
the "Scleroderma Voice," special updates on research,
and more. |
Education
The third element of the Foundation’s mission is education.
By promoting public awareness of scleroderma, the hope is
more funding will be allocated to combat and cure the disease.
Patients also benefit from education through health professional
seminars, scleroderma-based literature, and informational
brochures. |
Awareness
The Foundation has a dedicated Website, www.scleroderma.org,
filled with information designed to help scleroderma patients
stay up to date with current information. Medical
articles on the disease are constantly posted on the
site, and links to other relevant information are posted frequently.
The number of visits to the website daily is approaching 50,000.
Members also benefit from a Web-only newsletter published
weekly called the eLetter.
Scleroderma-related information is available by subscription
via this vehicle. Nearly 8,000 individuals now subscribe to
it.
Working with chapters, support group and friends of scleroderma,
the foundation works diligently to spread awareness to the
electronic and print media. This goal is accomplished by working
to place news events in the newspapers, televisions, the radio
or the Internet, producing public service announcements for
the media, and pitching human interest stories. Information
on scleroderma has been printed or aired on many of the top-tier
print and broadcasting outlets in the country, including the
"New York Times," the "Wall Street Journal,"
CNN, NBC’s "Today Show," and the CBS "Early
Show."
|
Outreach
Through referrals and other sources, scleroderma patients
and their families have access to the leading scleroderma
experts in the world. Many of these experts attend the foundation’s
National
Conference, held annually in a major U.S. city. Healthcare
practitioners specializing in scleroderma hold numerous workshops
on issues important to people with the disease. The foundation
makes video/audio tapes of these sessions available to those
who want them.
The foundation also publishes a slew of informational brochures
available for a nominal cost, and offers books and booklets
as well.
|
Advocacy and Leadership Development
In a very real sense, each of the three portions of the foundation
mission comes together in the area of advocacy. Each year
chapter and support group members visit congressional leaders
to raise their awareness of the disease and seek their support
for increased federal funding in the National Institute of
Health budget earmarked for scleroderma research.
The foundation also spearheads an annual leadership conference
for chapter and support group leaders. The goal of this conference
is to disseminate information aimed at helping those groups
manage their membership. |
|
 |
|
|
|
|
|
