“There is no treatment or cure. However, there is a strong sense of courage and hope in the FA community, due to ongoing research and clinical trials because of grassroots events like this,” said race organizer Christina Logan.
The 6th Annual Mother’s Day 5K Race for Christina was an absolutely amazing event, held at the beautiful Tyler State Park in Richboro, PA on Sunday, May 13th (Mother’s Day). When registration began at 8:30 am, the morning started out with a chill in the air from a cold and rainy night before. But as friends and FAmily gathered, you could feel the hope and determination in the air. We weren’t going to let a little rain stand in our way to cure FA. This belief that brought us all together on that morning, helped to warm us for the race.
It was wonderful to see all of the friends and FAmilies that were able to be there. For some, this event has become a Mother’s Day tradition, and for others, this was their first FARA event. About 168 participants joined together to race for a cure, raising over $17,000! This event was hosted by the Logan family and featured music performed by Council Rock South Marching Band, smoothies provided by Smoothie King, snacks, and waters provided by Trader Joe’s, a 5K sponsored by Doylestown Runner’s Advocate, and a fabulous Silent Auction.
It was very special to see everyone’s smiling faces. This was my family’s third time attending this amazing event. My two young boys were so very excited to participate in the 5K and had been looking forward to it for a while.
In a very touching and heartfelt gift that my 8-year-old made for me for Mother’s Day, he spoke of my love for traveling to Philadelphia and how if he could give me any gift, it would be for “enough money for a cure (for FA) so that I could walk again.” Needless to say, this brought me to tears. I treasure this gift and his love. I am blessed to have love and support from my entire family. We live in Vermont, and I travel to Philadelphia as often as I can to participate in drug trials and studies at the Children’s Hospital of Philadelphia. Currently, I am participating in a trial sponsored by Takeda Pharmaceuticals. Being actively involved in research gives me hope.
“Hope is stronger than fear.” Christina used this line to open her blog post about participating in a clinical trial. But, where does hope come from? Hope comes from action. People like Christina, volunteering to be in clinical trials. People like you, who come out on a rainy day to support the Logan family and FA research. Being in your company gives me hope- because of your grit and your persistence, FA research advances. There are new compounds in clinical trials and more genetic-based approaches to therapy in development. Knowing that you are here, and we’re doing the work together- any fears are extinguished by informed hope. This was Kyle Bryant’s speech right before the start of the 5K race.
Thank you so very much to the entire Logan family. Through grassroots fundraising events like this- your hard work, love, and support mean so much to our FA community, FAmily, and FARA. Together, we WILL cure FA!