Samsmom: Life, Joy, Loss and Loving your Mitochondria

I have a dear friend. Her sister was brutally murdered when she was 18. We talk a lot about grief, processing this world, PTSD, and the best way to go forward. It’s a fun game. A game usually around a couple glasses of wine, about who’s grief is worse. It…

I have the honor of sitting in on a Mitochondrial Support Group every week. I don’t have mitochondrial disease but I have lived with the impact on my family for 15 years. I love this group; it’s honesty, it’s camaraderie. Most of the people who call in are adults with…

This week found me in San Diego….which was awesome and beautiful and lovely. But more importantly, I was there for the Global Genes Rare Patient Advocacy Summit. Turns out, rare is not so rare. 1,000 beautiful souls gathered to make our rare known. Rare people are lovely. I already suspected…

My thoughts on advocacy!

This quote is not mine but I love it. I am going to steal it for every single mitochondrial presentation. For our doctors, for our researchers, for our government, for you….please…..be mighty….be bold……we are waiting. Friday found me here: Discussing this: I invite you to read the caveat on the…