The KCNT1 Epilepsy Foundation and the University of Pennsylvania Orphan Disease Center (ODC) invite you to participate in the Million Dollar Bike Ride (MDBR). This annual festival brings together families, friends and supporters representing 30 rare disease organizations to raise funds for rare disease research and spread awareness of rare diseases. Team KCNT1 will ride to raise funds to further research on KCNT1-related disorders in our quest for a cure! We hope you will join us or donate to help support Emerson Wild and all our KCNT1 warriors!
Team KCNT1 Atlanta Ride Details
Where : Halfway Crooks Biergarten
When : June 10th ; 3 PM Rollout ; Halfway Crooks will donate a percentage of their proceeds this day so come early or hangout after for a beer!
Other notes : This will be a super social, slow roll, no drop ride and it will be around 10miles. If you don't want to ride, just come and hang out! If you can't do either, please consider donating to the cause or sharing Emerson's story to raise awareness.
Emerson (Emmy) Wild was born on April 14, 2022. As her parents, Matt and Alex, were getting ready to take their beautiful new daughter home a few days later, she began experiencing seizures and was admitted to the NICU. After three grueling weeks of more seizures and no answers as to what was going on, Emmy received a diagnosis: a mutation of the KCNT1 gene with Epilepsy of Infancy with Migrating Focal Seizures (EIMFS). While the prevalence of KCNT1 related epilepsy is still unknown, approximately 3,000 cases have been identified globally, making this an ultra-rare disorder with fewer than 20 cases per million people and even more rare for those individuals with EIMFS. As of now, there is no cure for this genetic condition and the seizures that define it are resistant to medication.
Emmy’s first months were characterized by many stays in the hospital, and her seizures ranged anywhere from 10-50 daily. While her seizures have stabilized after many rounds of trial and error with medications and the help of the ketogenic diet, the combination of daily seizure activity and her genetic condition mean that Emmy has missed almost all developmental milestones. She is unable to roll over or sit up. She has limited movement of her limbs and she can’t make eye contact. She requires around-the-clock care.
Though the challenges are extreme, Emmy is also experiencing some big successes! She is working hard to hold her head up and still eats from a bottle – both of which are huge accomplishments and something only a rare few of KCNT1 kids with EIMFS are able to do. But, we hope for more!!
All funds raised from the Million Dollar Bike Ride will go directly to research of rare diseases, including KCNT1. Treatment or possibly cures can only be found through research and donations. And while potential treatments and medicines may not help Emmy, our hope is that one day there will be a cure for this awful disorder. Thank you for your support!