rarednafound

07/24/2026

07/24/2026

Spreading awareness throughout WI this weekend! Grandma Sharon and her life-long friends, Karen & Jean.
You never know who will see this and find a connection. Where are you wearing your shirts???

07/14/2026

A message from the big sister on our merch store!

07/14/2026

RareDNA Foundation Merch Store is open again! 🧬

Wear your support with pride. Every purchase brings us one step closer to launching groundbreaking, grassroots research for PPA2.

🛍️ Shop now: https://www.bonfire.com/store/raredna-foundation/?utm_source=copy_link&utm_medium=store_page_share&utm_campaign=raredna-foundation&utm_content=default

06/19/2026

Took on our first Conference this year. So grateful for all the amazing people we met, patients, families, researchers and medical professionals who are taking on this world.
Forever one big United Mitochondrial Disease Foundation family!💚

06/19/2026

A great first experience attending this conference and meeting so many new families.
Mito Community Minnesota honored to be part of the Wolfe Pack! 😉

06/04/2026

As Minnesota advocates, we couldn't be prouder that our state is participating in the NIH-funded BEACONS newborn screening project. BEACONS is studying how genomic screening can expand the life-saving impact of newborn screening by identifying treatable genetic conditions as early as possible.

For us, this is especially meaningful because PPA2 is one of the genes being screened. Families affected by PPA2 know how critical early detection can be. Every step toward earlier diagnosis is a step toward preventing tragedy and giving children the best possible chance at a healthy future.

www.beaconsnbs.org

06/03/2026

🩵 Today, on the one-year anniversary of Claire's admission to the cardiac ICU, we are honored to launch the PPA2 Cardiomyopathy Research Fund at the University of Minnesota Foundation. (University of Minnesota Giving)

We've committed $5,000 to open the fund and are asking our community to help match it.

Together, we can turn $5,000 into $10,000 for urgently needed PPA2 research and help create hope and answers for families facing this life-changing diagnosis.

Donate directly to the fund at the U today: https://makingagift.umn.edu/give/fund.html?id=26328

05/18/2026

Thank you CCX Media for bringing attention to this critical research! Please support either at our page or the University of Minnesota Giving where we have set up a specific PPA2 Research Fund page!
https://www.rarednafoundation.org/fundraiser

Just a year ago, Claire Stern's life changed forever with the diagnosis of a rare genetic heart condition. The Maple Grove Senior High School basketball alum turned that diagnosis into a passion by striving to fund research that could change others' lives for the better.

Click the link in the comments for the full story.

05/07/2026

Thank you Fox 9 for featuring our story! We are grateful and proud of the partnership the foundation has with the University of Minnesota Twin Cities Medical School to advance rare genetic heart research. This is the only the beginning of answers for our PPA2 community.
Please consider donating to support this grassroots research here: https://www.rarednafoundation.org/fundraiser

The Stern family from Maple Grove is taking on a mission to help advance research for a rare genetic heart disease. FULL STORY: bit.ly/4nfPDXX