Rachel | Living with ARVC

Rachel | Living with ARVC                                                     Phoenix, Arizona | Born January 1987   “I am forcing myself to take it easy—which is not easy.” Rachel grabs her tennis racket and heads onto the court. She savors the cool spring air,...

ARVC Awareness: Dawn’s Story

Can you tell me a little bit about your SADS journey?  I’ve always been very healthy and athletic, always involved in running or walking. When I was young, I ran track, cross country and participated in a lot of 5K’s and a few Tough Mudders as well as a half...

LQTS Awareness: Allison’s Story

Can you tell me a little bit about your SADS journey? I was diagnosed with Long QT Type 1 in 2018, following the birth of my twin daughters. About a week postpartum, I had a seizure at home. They think it was due to postpartum preeclampsia, which is pretty rare. In...

LQTS Awareness: Marjaan’s Story

Can you tell me a little bit about your SADS journey?  I’ve always fainted for no reason, maybe once or twice a year. It was either unprovoked or something simple such as tripping, getting hurt, or even being stung by a bee and I would faint.  Growing up, there...

Raising Awareness: Babett’s LQTS Story

In 2016, Babett’s daughter, Joriale, passed away from LQTS. This year, her book about her family’s journey was published – helping Babett spread awareness in honor of her daughter. In January of 2016, my daughter, Joriale, passed away from Long QT Syndrome. Nine...