Who is Stephanie’s Hope?

     When Stephanie’s Hope first started it was more like Sharon’s Hope. In case you don’t already know, Sharon is my Mom and I guess you could say that fundraising was a hope of hers soon after I received the Friedreich’s Ataxia diagnosis in January 2004. However, I was completely against becoming involved in fundraising. Friedreich’s Ataxia and everything that comes with it was far too personal for me to want to broadcast it at that point in my life. In fact, truth be told, I was much more interested in ignoring my diagnosis than acknowledging it. I didn’t even talk about it very often with my closest friends so there was no way I was going to talk about it with complete strangers!

     But all that changed on Labor Day 2005 while watching the Jerry Lewis telethon. There was a precious little girl with Muscular Dystrophy sharing about her fundraising efforts for the Muscular Dystrophy Association, while listening to her story I was struck by two things. First, she was so strong and brave (I wish I had written her name down so I could thank her), letting people across the country into her world. And second, if she could do it why in the world couldn’t I? So, I told my parents I thought I was ready to start fundraising and Stephanie’s Hope was born.

     The first ideas for fundraising events began being tossed around in early 2006, but this was new ground for my family and I and none our ideas seemed cohesive and strong enough to start building on. We needed help! Two close family friends came to the rescue and helped steer us in the right direction and before we knew it we had two backyard dinner fundraising events scheduled. It was so exciting and chaotic and stressful all at the same time but with a lot of help, the first two Stephanie’s Hope events in the summer of 2006 were a huge success.

     Encouraged by the outcome of those very first dinners, we were looking for more ways to continue our efforts. One of my best friends and her mom approached us with the idea of hosting a holiday boutique fundraiser. It sounded like a very promising, fun idea so we set off on pulling together our very first holiday boutique. The boutique turned out wonderfully and it was unanimous that it should be an annual event! Since then Stephanie’s Hope has also participated annually in a large bicycle ride in Palm Springs, a 5k in San Luis Obispo, a home boutique, an event for MDA, and several other events for the Friedreich’s Ataxia Research Alliance.

     As we approach our 9th annual Holiday Boutique, I can’t help but be excited about what the future holds for Stephanie’s Hope and the search for a cure for Friedreich’s Ataxia. I am thankful for all my incredible family and friends who have worked so hard to make Stephanie’s Hope a reality, I wouldn’t been able to do any of it alone!