Skip to content
TrackPodcasts
societyDec 17, 202521:11pending

The Fight For What Is Possible: For Nolan. For Thomas. For What Comes Next.

About this episode

Send us Fan Mail

Hope 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/donate

We 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 families

Support the show

Love this content? Check out our links below for more!
Linktr.ee Content
Instagram

YouTube

Jenny's LinkedIn

Get every episode summarized

Each time Steel Roses Podcast publishes, we email you a written briefing from the transcript — the topics, who appeared, and any specific claims, with the ad reads skipped.

Email me new episodes

Free for 3 shows. No card needed.

Hosts & guests

No transcript yet

This episode has not been transcribed. Request it and it moves to the front of the queue.

The Fight For What Is Possible: For Nolan. For Thomas. For What Comes Next.

Steel Roses Podcast

0:00
21:11

More episodes

More from Steel Roses Podcast

View all episodes →