Author: Hschichie

Happy Dia de los Muertos! Or Day of the Dead for those of us who did not do well in high school Spanish 🙂 I love this holiday. Celebrated all throughout Latin America-celebrating our dead, a celebration of love and respect for our family members who are no longer with us. What a cool day.…

Yesterday was the birth date of Jonas Salk. I missed writing about this because I was sewing Halloween bags for my beautiful, healthy nephews. October 28th is a historic date for many reasons. I sewed a Halloween Bag- I will let that one sink in a bit. Yes, I sewed. A bag. More importantly, it…

48 years ago, young Heather (that’s me) entered the world. She had 13 grandparents. You read that right, 13; a Great-Great Gran, sets of Greats and all of my Grandparents. I grew up knowing and loving all of these generations. And I have grown gradually losing these people. But in loving and losing my Grans,…

November starts NaNoWriMo- a month of writing in November. Writers commit to 2,000 words a day. I have signed up in HOPES that this will kick off my memoir. As a teaser, here are the first 1,000 words: I know it in my bones. I know something is wrong. I feel it in my hips,…

I tend to manage bad news better. Bad news means I need to take action, to fix it, to help, to cook, to bake, to comfort, to process……. Good news means I just get to revel. Soak. Just let it sink in. I’m trying to soak. Today I got a text from our dear scientist…

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 is not a game for…

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 Mito; a very under-served and…

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 this but there is nothing…

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 bottom of the poster ‘Given…