Friday, March 6, 2009

Non-Profit Impacts on Society - Why We Started One

Recently there has been much in the news about charities and foundations that have lost incredible amounts of money due to the management of their funds. Billions of dollars raised for charitable causes, now lost. So many people, organizations, hospitals depend upon the non-profit economic sector to help provide services that otherwise would go unmet - they will again go unmet as these non-profits are forced to cut back or close their doors.

In managing the Friends of FSH Research, I fail to understand "gambling" or creative investing with money that has been donated for it is simply not our money. The money we receive we protect and conservatively watched over as it is for the advancement of our mission - this money has been entrusted to us by generous donors specifically for FSH research. So though it isn't millions, every penny we have raised has been placed in conservative investments, guaranteed & insured, so it will be there when needed. It takes an incredible amount of work to raise the money we have so that to risk it would be unthinkable.

Charitable giving is looked upon by many individuals as a luxury, something only the rich are expected to do, a budget item that is the first to go. This is an unfortunate reality - somehow being "non-profit" places the work of these organizations as less than essential.

Non-profit organizations are an integral part of a progressive society; these organizations fill the gaps left by governmental agencies and the "for" profit companies. Non-profits usually emerge out of a need that is recognized in the community. These organizations tend to be advocates for issues which have been ignored or simply not recognized. They tend to speak out for people in need or a cause that needs attention and work to bring it to the attention of the rest of that community.

As I read in Saturday's newspaper about a woman that is now activist for a cause very close to her heart, I began to cry. As I read of her life circumstances and the events that pushed her forward, I was reminded of the events that pushed us to become active and work for FSH research. Following the horrific summer of 2003 with numerous medical appointments, seeking answers, going down wrong pathways, seeking evidence that might lead to an acceptable diagnosis and running away from Muscular Dystrophy. Muscular Dystrophy was not a diagnosis that would fit in our family's plans. We were just an ordinary family, trying to raise 4 normal, healthy children and looking forward to having them successfully launched and on their own. We were busy looking forward to the future, to colleges, marriages, grandchildren and retirement. A straight pathway - without deviations.

But, like the woman that I read about, events stepped in the way - and altered the course to be taken. Brian was diagnosed with FSH Muscular Dystrophy in September 2003. Our life circumstances changed - life events now pushed us forward along a new, very different path. I never ever saw myself as a leader or activist, and still don't, however, as we looked at our son it was clear we were going to have to take some action. The representative from the Muscular Dystrophy Association greeted us at the MDA clinic at Children's Hospital soon after Brian's diagnosis. They invited us to participate in their support groups & made sure we were aware of the adaptive equipment, such as wheelchairs that they could help us obtain. I did not want a wheelchair for Brian.

Our goal was to do all we could to help Brian stay healthy & strong. We started investigating what research was being done in FSH, trying to determine how close were researchers to finding a treatment or cure. It became clear very quickly that the MDA was not actively working on FSH research. Despite that fact that FSH is the 2nd most common form of Muscular Dystrophy in the adult population, affecting more than 25,000 people in the U.S, only 9 of the 385 research studies they supported in 2006 were for FSHD. With only a hand full of FSH research studies being funded by the MDA each year we felt that it was unlikely that something would be developed that would change the course of this condition for Brian.

In the late 1940s, Paul Cohen, a prominent New York businessman helped found the Muscular Dystrophy Association and served as the MDA's first president - ironically, Mr. Cohen had Facioscapulohumeral Muscular Dystrophy. Mr. Cohen & his family and friends founded the MDA because they felt that those with FSH and other neuro-muscular disorders had no organization which represented them. That organization, the MDA, which he helped to organize has failed to fight for those with FSHD. We hope to continue Mr. Cohen's work and fight for those affected by FSH. Friends of FSH Research's mission is to stimulate and fund new FSH research projects with the goal of finding a treatment or cure to this progressively debilitating condition.

Although we could see no other way to help or try to impact Brian's future, not everyone offered their support or positively responded to our decision to form a non-profit organization. Early while we were first getting our organization off the ground, we needed to find people to participate in an event in order to get public awareness for FSH Muscular Dystrophy, it required an afternoon's commitment. When I asked someone quite close to our family to help us, they replied that it "just doesn't interest me." It wasn't the "cause" I needed her to be interested in, it was my son.

Muscular Dystrophy had never been "my cause" before Brian's diagnosis. As a nurse, with a focus on labor & delivery, newborns, etc. I had been a supporter and donor to organizations such as the March of Dimes and Planned Parenthood. With our family outings to the zoo and the out-of-doors, we also took interest in groups such as the World Wildlife Foundation, Seattle zoo and Science Centers. These were the non-profits, the causes that "interested me."

Muscular Dystrophy, specifically Facioscapulohumeral Dystrophy is a cause that chose us. I was never very aware of Muscular Dystrophy, and certainly had never heard of FSHD but, when it hit our family, affecting our son, it became part of me. FSHD is part of my daily life, whether I am preparing for our auction, thinking of next year's event, researching information, communicating with researchers, writing letters or making phone calls - it is part of my existence. It is the battle I have embraced for my son.

"It's just a business Terry." That was a comment made by a long time family acquaintance, someone I had turned to for support and had hoped would support our efforts as we started our fundraising organization. To them, what I was doing was "just a business." From my perspective, this was the only thing I could do for my son, the only thing I could do that might make a difference. I saw no other option.

"Why an Auction?" We tried a letter writing campaign first, that was our first fund raising effort. Through that effort, writing everyone we knew, telling them of our story and asking for their help & support, we raised $4,000. With the cost of research close to $60 per minute according to some sources, $4,000 was not enough to advance this cause. So, in a local paper I read a story of a woman & her family and how she was helping make a difference for the research of a condition she was coping with - she was making a difference by conducting a fund raising auction. I read this article and immediately made some calls to get more information - I decided in the spring of 2004 that we too would have an auction. Our first "FiSHing for a Cure" auction would be in January 2005.

1 comment:

Jason said...

Keep up the good fight Terry. None of us chose this. I can remember watching the Jerry Lewis Telethon as a kid. I always thought to myself how awful it would be to have muscular dystrophy. Little did I know that I not only had it, but it had been with me since birth.

Your tireless willpower over these last 5 years continues to amaze me. Let's find Brian and the rest of us a cure, then we can go back to donating to the causes we choose :)

Jason