Team Captain Jack
I am 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.
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 new COVID-19 support programs - Cure SMA supports the community as they navigate life with the 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.
Jack Resendez was born on August 21, 2015, in Harlingen, Texas. For three weeks, he was an average infant. He kicked, held my finger, cried, and drank out of a bottle. By a month old, his body had changed like a snap of a finger. He was working hard to breath, had no head control, and the movement in his arms and legs was gone. On October 14, 2015, Jack was diagnosed with Spinal Muscular Atrophy. No aid in his condition was being provided in the RGV. So, mom did not put the phone down until there was a way to save her baby. Within a week, Jack was admitted to Children's Medical Center Dallas. That's where hope lives. Jack's mom was taught that even though there wasn't a cure available, there were tools to keep her son alive. So Jack was given a BiPAP to aid his breathing, a CPT vest to shake the junk in his lungs around, a cough assist to clear his airway, and a suction machine to remove secretions. Since, Jack has been under the care of Texas's best SMA doctor, Dr. Diana Castro. (Arguably USA's best!) She has been holding the flashlight strong the last almost 5 years! She enrolled Jack into a clinical trial at 4.5 months old. That trial was funded by Cure SMA. Without Jack and his 121 friends that participated in the double-blinded clinical trial for nusinersen, Sprinraza would not be an FDA approved drug today. Spinraza changes lives. It's changed Jack's life. The Resendez family is forever grateful for Cure SMA. They have been to every annual conference since diagnosis. This year, due to Covid-19, will be the first year it's been cancelled in all of time. That is why we have to show support this year from the comfort of our homes. Cure SMA has provided Jack with countless resources and tools to make Jack's life better, with the Summit of Strenght, equipment pool, diagnosis care package, Covid-19 care package and gift cards, and annual conferences. Family is important and Cure SMA is family.
Join me to support Jack Resendez and Cure SMA by joining Team Captain Jack for our first ever 2020 Virtual Walk! We know this is hard times for many, donation is not required.* However, we appreciate all donations because living with SMA does not take a pause. Everyday, we are one step closer to a cure. #CureSMA
The Walk-n-Roll is going virtual this year! Join my team, make a gift, or share my page on your social media to help me reach my goal.