To Shave or Not To Shave—> TOMORROW!July 08, 2010 by Victoria Strong
Tomorrow is the big Birthday Ball and the big day of head shaving! And Barb Zahn is simply extraordinary. Many people say they would do anything for their children -- but Barb actually is...and she's rallied a team in the process. Faced with no treatment and no cure, Barb is going to the extreme to bring SMA the attention and funding it needs to one day be a treatable disease. Read what she has to say about why she is Going Bald tomorrow to get a glimpse of this amazing mama -->
To give Lucy the best possible chance at health, I rarely leave the house in the winter. Since even a slight cold can land her in the hospital, it is imperative that I stay as healthy as possible, being that I am her primary caregiver. That means rare outings (alone) to the grocery store or to run some short errands - Lucy NEVER leaves the house in the winter, except to go to the hospital. Needless to say, winter is excruciatingly long, and by February I am quite stressed out by cabin-fever syndrome. In the dead of winter, with no spring in sight, SMA seems it's cruelest, and you're left thinking about what you wouldn't do to have your child rid of it.
We had just finished our "Drink SMA Under the Table" fundraiser, and I was brainstorming what our next move would be. I knew there was no way we could just wait around for funding to show up for SMA research, and I wanted to do something to make a statement and show people what a cure for Lucy would mean to me, while raising as much money as I could for research. There's not much that makes a louder statement than a bald woman!
So "Cutting It Off for a Cure" was born. People were then telling me that they would pay for me NOT to shave my head, so thanks to Brianna McDanel and Victoria Strong, the campaign "To Shave or Not to Shave?" evolved, including "Saving Locks to Save Lives" for those who wanted to donate, but didn't want to see me lose my hair.
Along the way, shavers and supporters held their own events, donating the proceeds toward the shave campaign. I am so amazed at all the people who have put so much work into the fundraiser that have helped us surpass our original goal. Lucy has been an inspiration to many people, and beyond raising even a dollar - SO many more people know about SMA, and that makes it even more lucrative, because to cure this disease, people NEED to KNOW about it! Not just the families that are given the earth-shattering news that their child is most certainly going to die, but everyone in the world, because the next child born with SMA could be anyone's. I have complete faith that the SMA community, with its supporters, is going to change that statistic soon, and I feel very blessed to be a small part of it.
Happy, happy birthday sweet Lucy! And happy, happy head shaving Barb, Marjorie, Grandpa Greg, Paul, Ben, and Jim! You guys are incredible!!! To read more and to contribute to Barb's goal visit --> ToShaveOrNotToShave.com. 100% of everything Team Lucy has been raising in To Shave or Not To Shave is going to gene therapy and the $200K for SMA campaign.
Goal set, goal met, goal exceeded. Once AGAIN! Six months. Thousands of donors. Hundreds of organizers. 60+ fundraisers. Together we not only raised $200,000 for promising SMA gene therapy...