Stella Linderman
Stay StellaStrong - Move CDKL5 Forward
Fundraising for International Foundation For Cdkl5 Research
Story
THANK YOU TEAM STELLA!!!!!!! WE HAVE MET AND ARE EXCEEDING OUR FUNDRAISING GOAL OF $50,000 JUST LIKE STELLA WILL BEAT THESE SEIZURES AND OVERCOME ALL OF THE DEVELOPMENTAL CHALLENGES THAT GO ALONG WITH CDKL5!!!!
Thank you for SHOWING UP! But we can't stop here! Let's keep the momentum going as CDKL5 Awareness Month is only 1/2 way done and cures cost money. We raised $24,480 for CDKL5 for the Million Dollar Bike Ride. Let's see if we can raise $75,520 here to make our fundraising success an even $100,000 for 2021! I know we can do it! Thank you for Staying Stella Strong!
Stella's Story
Our precious Stella was born on November 7th, 2019. In April of 2020, at about 5 months of age, Stella exhibited her first seizures. After extensive testing, we were informed that Stella has a very rare neurological genetic disorder known as CDKL5 Deficiency Disorder (CDD). There are currently no definitive drugs or treatments available to manage her seizures to give her a break. There is such a wide range of development success rates that there is no way of knowing where Stella will land on the spectrum--meaning we don’t know if she will ever walk or talk.
What is CDKL5 and CDD?
CDKL5 deficiency disorder (CDD) is a rare neurodevelopmental condition that is characterized by early-onset epilepsy (seizures), low muscle tone and developmental challenges. CDD is classified as an orphan/rare disease. Today, there is no effective treatment and no known cure for CDD. The disorder is caused by variants in the CDKL5 gene. CDKL5 codes for an enzyme that plays an important role in brain development and function.
Realizing the Promise of Gene Therapy
Unlike traditional medicines or therapies, which require frequent administration and focus on managing symptoms and disease progression, gene therapy is designed as a potential one-time treatment aimed at targeting the underlying cause of a disease at the cellular level. Team Stella Strong is putting our miles and dollars on betting that Gene Therapy is our golden ticket to curing CDKL5 and stopping the seizures for Stella and all other kiddos impacted by this terrible disorder.