Sunday, February 1, 2009

Raising Money - Hope for the Future

Brian was diagnosed with FSH in September 2003....after the family crumbled, we decided we would try raising money for FSH research. We found an organization committed to FSH on the east coast that we wished to help so we wrote a letter to every family member, every friend in fact, almost everyone we had an address for we asked to help us. We raised approximately $4000 for that organization. Clearly $4000 would not impact sufficiently the world of FSH research to help change Brian's future. As a family we took a step back, took another look at how we could help Brian, how we could change the future he faced.

I read about someone in the Seattle area that conducted a benefit auction and how she was able to raise an impressive amount of money for a medical condition she faced. I decided that we should try a benefit auction. To do an auction, Brian would have to share his "secret" with his friends and our community. This decision was his alone, I told him that I would explore other fund raising methods if he was uncomfortable going public. After some thought, he decided to help us conduct our first auction as a part of his senior high school project. He made a call to a friend, to tell the first person about this secret he had kept for the past year. After that call and getting support from his friend, he wrote a letter to each family at the school asking for their help.

I talked with the event staff at the Hyatt and signed a contract for our first auction, the date selected was to be January 25, 2005. It was only after I signed the contract that I began asking friends for their help. It was a leap of faith for I believed that others would care about Brian & those with FSH Muscular Dystrophy and want to help. I made calls to my friends, I asked them for their help as I put together a board of directors for this foundling organization. Not one person responded negatively, no one hesitated, each said "yes." With the auction on the horizon, I began negotiating with the east coast organization & the I.R.S. to make sure we had everything in order before the auction. I needed to get our 501 status established in order to give donors the assurance that their donations would be tax deductible.

The east coast organization moved slowly as they tried to figure out how I could raise money for them, to insure things were done correctly. But, the IRS was clear on what they required me to do before raising money; I needed to raise money using my own EIN number. I followed the IRS requirements and lost the cooperation of the eastcoast organization. Now I had to proceed alone and chart a course of our own.

Work began as we mapped out our organization's mission and articles of incorporation. There were samples on the Internet, writings from other non-profits that we used as we built our organization. I copied, changed and incorporated things that we found which worked for us. With the help of the IRS advisers that I spoke with by phone, we satisfied their requirements and obtained our sought after goal, the coveted 501(c)(3) status.

Not only did we need to get donations for an auction & get people to attend our event, we also had to develop a plan for where the event proceeds would go. I met with Dr. Tom Bird at the University of Washington's Medical Center earlier that year in order to learn about FSH Muscular Dystrophy. Dr. Bird was one of the few physicians knowledgeable about this condition in the Seattle area. I called Dr. Bird and asked for his help.

I told Dr. Bird about my fund raising plan, our organization and our January auction for FSH research. I asked Dr. Bird if he would act as the director of our scientific advisory board. He would need to help us obtain research proposals & coordinate the evaluation of the proposals for funding. Additionally, he would be in charge of asking others to serve on this scientific advisory board with him - thankfully, Dr. Bird was willing to take on this task!

By the end of the summer of 2004, the Pacific Northwest Friends of FSH Research was ready to move forward to their first FSH fundraising auction.

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