Heart of PPA2

06/26/2026

06/25/2026

As if a PPA2 diagnosis isn’t enough, Callie experienced a head injury over the weekend. Per her mother, she’s doing well and back home and on the mend 🙏🏻❤️

https://www.instagram.com/reel/DaBnOYyN00A/?igsh=MWQ2ZmhzcW50anZ2NA==

06/24/2026

Spots still available! All skill levels welcome!

Sign up here ➡️ https://www.zeffy.com/en-US/ticketing/pickle-for-ppa2

TopSpin Pickleball

06/22/2026

https://www.instagram.com/p/DZ5q5kbG1hQ/?igsh=c3hyM3dqcTJjb3Vw

06/22/2026

Read more of Our Rare Life story, as well as several other stories of sudden cardiac arrest in the full article here ➡️ https://www.theguardian.com/australia-news/ng-interactive/2026/jun/21/sudden-cardiac-arrest-leading-cause-death-young-people

06/21/2026

Sudden cardiac arrest is statistically rare but among the leading causes of death for children and young people. And families often have no idea of the risk until it’s too late

06/20/2026

Claire & Noah, both living with PPA2, met for the first time at the United Mitochondrial Disease Foundation MitoMed conference!

Two hearts, different journeys, one rare diagnosis…and an instant connection that reminds us we’re never as alone as this disease can make us feel.

We’re in this fight together ❤️💚

rarednafound