I want you to meet our friends, the Zahn family: Noah, Barb, and baby Lucy. Lucy is the most darling little girl and this July she will turn one. And, yes, Lucy has SMA.
On October 14th, Lucy Zahn was diagnosed with SMA Type 1. Within mere months and in the midst of learning to care for a Type 1 SMA child and processing the devastating diagnosis, the Zahn family was already actively fundraising to end the disease. They immediately joined Unite for the Cure, raising $6,000 for Dr. Keirstead’s reseach in a massive community pizza sale — making over 4,500 pizzas in one night! And they haven’t stopped there. The Zahn’s and their incredible family and friends are determined to help SMA researchers. They have since hosted “Drink SMA Under the Table”, a rummage sale, “Rock SMA”, “Shed the Pounds for SMA”, and upcoming they have a brat fry and bake sale planned. They are creative and determined. And their efforts are making a difference.
But, perhaps the pice de rsistance of fund raising efforts is what this mom is willing to do to bring attention to this cruel disease and fight for her daughter’s life. To mark Lucy’s 1st birthday, a survival milestone in the SMA world, Barb has challenged herself to raise $10,000 for SMA research and in doing so sparked a creative fund raising competition — “To Shave or Not to Shave?” Barb decided that if she could raise $10,000, she would shave her head! And while many people were sponsoring to have the locks of her gorgeous hair sheered off, others began asking if they could sponsor her NOT to shave her head. And thus, “To Shave or Not To Shave” was born. Barb is asking that you sponsor a lock of hair for $10 (multiple locks are welcomed), and you get to decide if it her hair stays or goes. If you donate to Going Bald To Save Babies her hair goes! If you donate to Saving Locks to Save Lives her hair stays. Whichever cause has the most money wins! And heres the great part > No matter if her hair stays or goes ALL the money will be donated to helping researchers cure SMA!!! I think it is key that I point out here that Barb is just a regular mom — she doesn’t moonlight as a singer in a punk band. Going bald is a big deal, but she shrugs it off saying, “My hair will grow back, if I lose my daughter, she’s irreplaceable.”
We are humbled that the Zahn’s selected the Gwendolyn Strong Foundation for this inspiring challenge. And we are honored to know such a kind, thoughtful, and tenacious family. Please check out Barb’s challenge. Leave her a comment of encouragement. Join her facebook causes: Going Bald To Save Babies and Saving Locks to Save Lives . Consider joining her by shaving your own head!!! She already has a growing list of brave men and women joining the fight to end SMA! And please, please sponsor a lock of her gorgeous, thick, perfect hair. What she does with it, is up to YOU!
To follow Barb’s journey visit her blog — To Shave or Not To Shave
To learn more about the Zahn family visit their family website — Lucy’s Hope For a Cure