August 12, 2021

A Rare Collection - Rare Disease Storytelling - Skin In the Game with Adam Johnson, Nathan Peck and Marni Cartelli

17 minutes

ONCE UPON A GENE - EPISODE 095

A Rare Collection- Skin in the Game with Adam Johnson, Nathan Peck and Marni Cartelli

There's power in storytelling- for the listener and the storyteller. A Rare Collection is a monthly series featuring three people from the rare disease community, sharing a story with a common theme. Adam Johnson, Nathan Peck and Marni Cartelli share stories of having skin in the game.

EPISODE HIGHLIGHTS

Adam Johnson, DadVocate

Adam made his way through the gates and into his field of dreams- Wrigley Field, home of the Chicago Cubs. He felt at home among forty thousand strangers, all his people coming together in one place, at one time for a common love and in support of a common hope. As the song "Take Me Out to the Ballgame" goes in Wrigleyville, fans root for the Cubs and if they don't win, it's a shame, but through dedication and persistence, Cub fans are still loyal fans through thick and thin. Adam shares that just as the Cubs have had bad days, he's too had bad days since he was diagnosed with a rare disease. Some days it seems he'll never win and some days the wins are among days of painful losses. The Cubs made it to the World Series in 2016 and won their first championship in 108 years. He holds on to hope that he'll step foot back in Wrigley Field with his children one day and that his rare disease will be cured. It's supposed to be hard. If it wasn't, everyone would do it. The hard is what makes it great. In spite of the losses, the victories along the way is what makes the hard great.

Nathan Peck, CureVCP

Nathan tells a story about being JV basketball in high school, having his front tooth broken off by another player. He was so angry that he threw the broken piece of tooth under the bleachers. But he got back in and finished out practice. Advocacy is about the skin in the game- having dedication, the want and desire to get it done together.

Marni Cartelli, CRPS Patient and Advocate

Marni credits football with saving her life. Marni was naturally loud as a child and her mom often said if she were the first born, she wouldn't have siblings. Her dad introduced her to football and she loved it. Marni and her husband share their love of football and have gone to an NFL game every year from the year they met until her rare disease symptoms onset. It's been six years since she's been able to carry on that tradition, four years since she tried to kill herself and three and a half years since her husband used her connection to football to help her back from the edge. Marni shares that her disease symptoms started and progressed very quickly. For months, she isolated herself, only seeing her specialists and husband. The disease progressed, leading to deeper depression. Marni's husband pushed to reconnect with her over football and it worked. Sundays eventually became less focused on the losses and treatment costs and all about dropped passes and crazy plays.

LINKS AND RESOURCES

Cure VCP Disease

https://www.curevcp.org/

DadVocate

https://rarediseasedad.com/about

Cure Mito Foundation

https://www.curemito.org/

Uplifting Athletes

https://www.upliftingathletes.org/

CONNECT WITH EFFIE PARKS

Website

https://effieparks.com/