Rare Awareness Radio
Rare Awareness Radio
Podcast Description
Shedding light on underrepresented diseases and the efforts of non-profit foundations working tirelessly to support those affected.
Podcast Insights
Content Themes
The podcast focuses on rare diseases, advocacy, and the intersection of healthcare and technology, with episodes highlighting topics such as the role of AI in drug development, the importance of early diagnosis, and community support, featuring stories like Yiwei She's mission with the TNPO2 Foundation and Adam Clatworthy's work with CRELD1 Warriors.
Shedding light on underrepresented diseases and the efforts of non-profit foundations working tirelessly to support those affected.
Fighting for Juju – A Father’s Mission to Raise Awareness for CLN2 Batten Disease
In this powerful episode of Rare Awareness Radio, we sit down with Jonathan Vargas, co-founder of Juju and Friends: The CLN2 Warrior Foundation. Jonathan shares his family’s emotional journey after his son, Juju, was diagnosed with CLN2 Batten disease—a rare, neurodegenerative condition.
From heartbreaking hospital stays to launching a nonprofit advocacy group, Jonathan’s story is one of resilience, relentless love, and the drive to make a difference not just for his own child, but for families everywhere facing rare diseases.
🎙️ Don’t miss this heartfelt conversation about advocacy, hope, and the power of never giving up.
🔗 Learn more: https://give.rarevillage.org/campaign/juju-and-friends-cln2-warrior-foundation/c386658
#RareDiseaseAwareness #CLN2 #BattenDisease #RareAwarenessRadio #ParentAdvocate #JujuAndFriends #DisabilityAdvocacy #HopeForJuju
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