Welcome to My Personal Page
Jonathan and I are fundraising for Cure SMA because they are leading the way to a world without spinal muscular atrophy. SMA is the number one genetic cause of death for infants and 1 in 50 people in the United States is a genetic carrier. Jonathan and I both are carriers and never knew we were until we had Ryan. While it was traumatic injury during a routine transfer that led to Ryan's death last December, he wouldn't have needed that transfer from his wheelchair if he hadn't lived with SMA.
SMA impacts the lives of thousands of people and Cure SMA is an irreplaceable resource. By providing services like care packages for newly diagnosed families, teens, and adults, local Summit of Strength programs, an equipment pool, and the Annual SMA Conference - Cure SMA supports the community as they navigate life with SMA. Cure SMA has also invested more than $80 million in research and has funded half of all the ongoing new drug programs for SMA, including Spinraza and Zolgensma, two FDA-approved therapies for SMA.
Join us by registering or donating today! Please make a generous donation to support Cure SMA so they can keep providing these important programs and services for the countless children and families impacted by SMA.
If you knew Ryan, you likely know that, in addition to Doctor Who Time Lords and their time travel through the TARDIS, Ryan loved Bob Ross... his life perspectives, turning mistakes into "happy little trees, happy little clouds, or birds." He even created his own tribute on YouTube, but was asked to take it down... Because it is absolutely crazy that Ryan won't be rolling with us this year, in honor of Ryan and Bob Ross "Let's get a little crazy here"... for Ryan, his sense of humor, for Cure SMA, and... to have fun.
In celebration of Ryan, wear or carry your favorite Bob Ross representation, something "phthalo blue" (Ryan's favorite Bob Ross color), something related to Doctor Who or the TARDIS... or pick up your very own "Let's Get a Little Crazy Here" t-shirt on the Spreadshirt store that Ryan set up several years ago:
Thank you for joining us in the fight against SMA!