This note is in response to the questions I was asked yesterday:
"Which Ehlers-Danlos organization is the best one?" and "Has there been
any research done on EDS?"
Different people with EDS have
different passions and different perspectives on how to pave the path
to the one thing we all have in common: to find a cure. The incredibly
varied ways in which we do this include (not limited to):
- Supporting people in crisis.
- Provide ongoing support to share the experience and knowledge on the the journey to wellness.
- Speaking out in an honest and concise manner to increase awareness.
-
Reaching out to educators at all levels (pre-school through post-grad
and medical schools) to increase accurate educational awareness.
- Sharing the experience and sometimes the burden (financial, emotional, institutional...) of living with EDS.
- Social Networking
- Legislative Advocacy
- Spiritual support
How
do we put a fair price on all of these (and more) critical services? If
paying an executive director means that outside
organizations/donors/volunteers/legislators view the non-profit as a
worthwhile concern, then I believe it is the right thing to do.
I
know that I cannot say that one of these things is more important than
the other. They all need to happen and are all being done by a
collection of organizations (formal and informal, funded and volunteer)
meeting the needs of so many people in an appropriate manner. As an
individual I cannot say that one effort is better or more deserving than
another if even one person is helped at the right time. Speaking out
negatively about one of these efforts does nothing to advance the
mission of any of the others.
For 20 years I have been
openly involved with and supported almost 3 dozen EDS related support
efforts around the world in a myriad of ways: speaking, writing, phone
support, volunteering at events, fundraising, social networking, serving
on Boards of Directors.... In addition I have been actively involved
with other support organizations including Arthritis Foundation,
American Pain Foundation, Scleraderma Foundation, National Fibromyalgia
Association, Northern California Pain Care Initiative, Special
Olympics....
Regarding fundraising for research. Not all
research results are tangible. Research leading to a cure is just as
complex as figuring out the best way to support individuals living with
EDS or pain.
I've been involved with EDNF since 1991 and
know that EDNF has supported research and awareness in a variety of ways
in addition to research grants. This information is documented by
published articles in Loose Connections - many of which are not
available (yet) in digital form.
- Small grants for survey research which lays the ground work for clinical and/or lab research.
-
Two conferences (Boot Camp I & Boot Camp II in early 1990's) that
collected physical data from conference attendees in 6 medical
disciplines which resulted in (1) a dozen published articles that we all
rely on and cite (2) framing of questions to explore in future research
(3) a clear path to fine-tuning the diagnostic process.
-
Participation (financially & in the working groups) in the revised
nosology, Villefranche, 1997 in participation with the UK EDS support
group.
- Partnering with NORD to combine funds to award research grants.
-
Working with NIH to redefine research scopes to include Ehlers-Danlos
Syndrome as one of the conditions explored whenever research is done on
connective tissue, arthritis, pain, cardiology, vasculature, healing,
hearing loss, aging.... In the decade prior to 1994 there were 3 NIH
research projects that included EDS in the scope of the project. Between
1996 and 2006 (sorry, I haven't checked since then) there were 33
research projects that included EDS in the scope - some of which are
ongoing.
- Hosting researchers and healthcare providers to compare notes, share knowledge and look at needs/possibilities.
-
Connecting private donors directly with researchers has resulted in
data collection, meetings, responses to RFPs and so many more necessary
activities to facilitating research.
- Paying for the re-publishing rights of scientific articles to be reproduced in Loose Connections and/or on the website.
The
research funded and supported by EDS Network C.A.R.E.S is well
publicized on their website at:
http://www.ehlersdanlosnetwork.org/research.html
There are
IRS rules and state laws that dictate how fundraising is done, how
funds are tracked and how non-profit organizations are set up and
administered. ALL non-profits have to pay for state and federal
registration, to produce documents and literature, to 'keep the lights
on' and how they do this, by law, must be declared to the IRS. For
example, if an organization accepts help from someone who pays their
printing costs or buys a computer for them, this must be declared as a
donation in kind and assigned a dollar value for reporting purposes. The
final tally is transparent because USA non-profits in good standing
produce 990 tax forms that are publicly available for anyone to review.
This is where you go to find out if a non-profit is a going concern and
what they are doing with the money.
In good conscious I
can only say that all of these efforts should be supported through
volunteerism AND fundraising. I plan on continuing to do this to the
best of my ability. Won't you join me?
Respectfully,
Maggie Buckley
