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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

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Nolan’s future depends on what we do right now.
Kara has fought relentlessly to get her son to this moment. Your support, whether large or small, helps turn scientific hope into real treatment for Nolan and stability for his family.
Please donate today --> https://give.rarevillage.org/campaign/733811/donate

We break hiatus to share Kara’s story of Nolan’s birth, crisis, and the fight to turn rare disease from a verdict into a plan. From induced coma and surgical hurdles to N-Lorem, we trace how a parent can move science toward real impact.

• Nolan’s traumatic birth, seizures, and NICU coma care
• Genetic diagnosis and first-line seizure strategies
• G tube placement, hip reconstruction, and line infections
• Ketogenic diet benefits and a rare, severe complication
• PICU admission with anemia, scurvy, rickets, and recovery
• ACTH trials, status seizures, and EEG realities
• Family resilience, sibling empathy, and community support
• The turn to ASO and CRISPR for KCNQ2
• N-Lorem acceptance and current progress
• Reflection pause and preview of part two airing Wednesday

Take care and thank you for joining us

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We talk about why “doing it all” breaks us and how to build grace into busy seasons. We then share Nolan’s story, a child with KCNQ2, and the urgent campaign to fund personalized therapy that could change his life.

• myth of having it all and why it harms
• using grace as a daily practice
• setting priorities across family, job, and podcast
• planning hard weeks and asking for help
• Shonda Rhimes’ truth about trade-offs
• Nolan’s diagnosis and what KCNQ2 means
• personalized ASO therapy and quality of life
• why funding is needed and how to support
• sharing the donor link and spreading awareness

Please message me if you know an organization that’d be willing to donate. I’m going to link the donor page in the description—even a small amount helps.

https://give.rarevillage.org/campaign/733811/donate

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