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Motivation comes from the most unexpected places

Posted Jan 05 2011 3:45am

A very good friend of mine sent me this link earlier this week.  It was a news piece about a family, who had a daughter with a very rare disease, that sent out an email looking for financial help to raise money for research on this disease.  Not very unusual, I know.  But this one email took on a life of its own, and they raised over $175,000 for research.  To me, this was like they struck oil.

One family, one email…turned into an amazing step forward towards saving their daughter’s life.

So when my friend shared it with me, all I could think of was how scared I had been to put that kind of direct request for help out there.  To go up to someone and say, “Here is what I am doing.  Please help me with raising money, awareness, time, etc.”

I always felt like we were mostly alone in this fight when it comes to the real getting into the foundation of what it would take to save Hannah’s life.   People that I expected to jump into Hannah’s fight ended up doing nothing, offering nothing, and when asked, rejected my request for help.  You know, it is one thing to post “please donate” on my facebook status or blog, but to ask people for money, their time, or resources directly, well…I just didn’t’ feel comfortable with that.

I admit it.  My self-esteem, my fear of more rejection, or whatever you want to call it kept me from trying to make real inroads into making the changes I had envisions since Hannah was diagnosed two years ago.  I felt that if the people I expected to help just by sake of who they were didn’t want to be involved, why would other people want to help?

Now I know that I have made some small progresses here and there, so it is isn’t to say that I feel I haven’t done anything.  Because, well, I know I have.  I am proud of what I have accomplished so far, especially with bringing the neuronopathic Gaucher community together, the media attention, and getting Hannah’s story out into the Gaucher research world..  I am proud that I am responsible for raising almost $5000 for the Children’s Gaucher Research Fund, even though this was mostly from a few good friends.

But I look at what I have done, and none of it requires people to really get involved donating their time or skill for something big.   Something that could make a huge change.  I never proceeded with anything because I didn’t want to hear, “I’m sorry, I can’t.”  Because to me that was saying, “I’m sorry, Hannah just isn’t worth my contribution,” regardless if that was what they were really saying.

After learning about this family’s story, how this one email could make so much of a difference, I decided that maybe I can have this type of lucky strike as well.  I have ideas that I think could make a difference.   I also came to the realization that if I don’t ask for help, if I don’t give people the opportunity to help, that I am creating my own rejection without giving anyone a chance.

So I have started doing just that.  With not just one project, but four different projects.  Four projects that will hopefully make a permanent change moving forward within not only the nGD community but the childhood rare disease awareness as well..  I am going BIG.

I have started by asking people directly, some who barely know me, “This is my goal.  Will you help me with my XYZ project.”    I literally tell myself dozens of times a day to “Just do it.  The worst they can say is no.”

And even though I have just scratched the surface of putting these projects together, the very few people that I have asked for help from so far have enthusiastically said, “Yes.”   If even in the end only one of these project ideas comes together and is successful, then it was all worth.   One step forward is better than standing still.

The foundation for these projects are already starting to be laid as we speak.  Be forewarned, I may be asking you for help next :)

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