It Isn't a Competition, We Need All of Them

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