About this episode
Send us Fan MailHope is here, but time is critical. Nolan is eligible for a groundbreaking, individualized treatment, and the final barrier is funding. Your donation today directly supports access to care that could change Nolan's life and ease the daily reality for his family and others. Give now. Every moment counts. --> https://give.rarevillage.org/campaign/733811/donateWe move from Nolan’s early journey into the present. We talk plainly about hypervigilance, sibling grief, community support, and the funding gap for N-of-one trials.• What ASO is and how it targets RNA to silence a bad copy• Why Nolan’s KCNQ2 variant is ultra-rare and high risk• Trial gains from a potassium channel opener and current limits• Daily caregiving realities, suctioning, feeding and dystonia• Hypervigilance as a permanent state for caregivers• The emotional load on siblings and lost moments• Goals that matter most, vision, purposeful movement, connection• How n-Lorem provides the drug and why delivery still needs funds• NP Believe via Rare Village as the donation pathway• Building awareness to help other nano-rare familiesSupport the showLove this content? Check out our links below for more!Linktr.ee ContentInstagramYouTubeJenny's LinkedIn
