I have donated thousands of dollars to this organization and i was planning to hold a fundraiser for it in conjunction with my 50th birthday in 2010 at no expense to the organization but the executive director/founder became disgruntled when I asked about how its money is spent and whether she would appear at the fundraiser to speak on the illness. She then withdrew the organization from the fundraiser. She never publicly attempted to recruit volunteers to help do the fundraiser even though her organization would have been one of two beneficiaries. I should have done due diligence before I chose to include this organization in my fundraiser. Lesson learned.
Review from Guidestar