I’m so ready to start coming up with fundraising campaigns to get money for research for Hannah. Being in the midst of this “economic climate,” it is going to be even harder to raise money.
Even though I feel better that we are still more likely dealing with a type 3 progress of the disease, the bottom line is it still is going to cause her even more neurological decline over the next few years (including a breathing tube and a tracheotomy), and we may still lose her in the next 10 to 20 years if a treatment isn’t found.
So here presents my dilemma…
1. My definite first choice would be to work with an already active gaucher’s type 2/3 research group and just raise money for them as the infrastructure is already in place. But I’m still waiting to hear back from the Children’s Gaucher’s Research Fund to see if they are still active in that area, and if so, what is the latest on what is going on.
2. Second choice would be to start our own nonprofit and raise money that we can directly give out to researchers who are working on type 2 and type 3. Main problem would be the “business” end of setting up the nonprofit, maintaining it, etc. However, it would give us full control over who gets the grant funding. Being part of a “business” family, this idea doesn’t scare me at all, I’m just not sure how difficult it would be to seek out the medical support needed for this plus find startup money to get this going. Also time wise, this would become a full time job for me.
If the CGRF isn’t active in the research department anymore, then I have no choice but to do the startup on our own, as I have yet to find any other group that supports type 2 or type 3 research specifically. The National Gaucher’s Research Fund doesn’t fund type 2 and type 3 research (I wonder if I could change that — 5% of all Gaucher’s patients have type 2 and type 3, shouldn’t they get at least 5% of the funding?).
What to do, what to do…
One other option to consider would be to find a local “fiscal agent” or “fiscal sponsor” that is already a non-profit. This way, you can use your time and energy to handle the mission/cause related work (fundraising, awareness/outreach and research) and utilize the infrastructure of an established organization.
A lot of community coalitions and groups not-quite-ready for being stand alone non-profits I have worked with try this route. In some cases, they have eventually turned into 501(c)3 organizations…in others, this mode has worked out fine. You can learn more about at http://foundationcenter.org/getstarted/faqs/html/fiscal_agent.html
Hope this helps! Glad to see that Hannah’s recent treatment went well. I wish you all the best!
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I wish you the best of luck with your fundraising efforts. You have a strong motivation and I know you will do well on whatever path you choose.
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