Looking for Hope at the UMDF Conference


(image from UMDF.org)

The United Mitochondrial Disease Foundation conference was in Alexandria VA., next door to Washington DC. Last year it was in Seattle and I brought Rhia to meet other people with “Mito”. This year, I went on my own. I was scheduled to give two talks about vision loss and spend a day advocating for health care in Washington DC. There was no way I could be Rhia’s caregiver and interpreter and teach and advocate. And last time I missed most of the talks about mitochondrial disease because I was busy helping Rhia meet other people. This time I was going for me.

I wanted to learn and meet other family members. Rhia has been declining both physically and mentally this year and I wanted to see if there was any new information to help her.

There wasn’t.

Without a specific diagnosis of a specific mitochondrial disease, there is very little anyone can do.

A lot of people with Mitochondrial disease know exactly what type they have, down to the specific genes affected. Leigh’s disease, PDCD/PDH, MELAS, Luft Disease, and 40 other types of Mitochondrial disease have been identified. There isn’t a cure, but there are treatments to help with symptoms and a frame work for what to expect. People at the conference tend to get together into “mito” groups, bonding over their diagnosis and outcomes, comparing doctors and treatments, and sharing ideas about coping.

But without a diagnosis, who do you bond with? You spend time with other people who are just as lost as you and who also have no idea what to expect or who to turn to. We are a mystery. We gather with other mysteries and quickly run out of things to discuss. We hear the latest study on possible treatments for a identified mitochondrial diseases and wonder how many years it will take for the experts to figure out what we have. Which gene, or multiple genes, are affected? How long do we have to live? I met parents just as scared and hopeful as I, but when they asked how my daughter was doing I was honest.

“She’s in a decline.”

They looked at me with sympathy, but quickly moved away. They didn’t come there to hear sad stories, they came to the conference looking for hope. So did I, but unfortunately I didn’t find it.

Instead I focused on the two talks I was giving at the conference, one to people with vision loss and the other to the larger assembly of attendees. If I couldn’t find hope for myself or my daughter, maybe I could help others find it for their own loved ones.

I’ll post about my experience as a speaker next time.


May 19 is a big day for me, and Medusa’s Muse.

Two big events in my life are happening on the same weekend, and I’m both excited and a tad stressed out.

First, the 10th Annual Festival of New Plays at Mendocino College opens on May 18th, with a second performance on the 19th. The festival showcases nine Ten Minute plays and my comedy, The Wedding Party, was chosen to be one. The director who chose my play is young, which I think helps her “get” the characters so well. She’s really good, and the cast is excellent! I’m really excited to see it performed (while also dreading sitting in the audience watching their reactions, which could be good or bad).

Here’s a link to Ukiah Daily Journal about the festival, with a description of all the plays. You can also see my description of The Wedding Party by clicking Writing on this blog.

The other exciting thing happening that weekend is also at Mendocino College: LitFest. Click the link to see all the excellent teachers, authors, and classes at this FREE event. I’ll be teaching my class, Framing the Dream, at 2:00. Be sure and sign-up now as the class fills up fast (click the Classes link on this blog for more info on the class).

I saw the countdown to LitFest on my blog and had a mini-freak out. How did the time sneak up on me like that? I have materials to update and the power-point to finish. Between my teaching job and the end of the school year madness that involves, and my sick kid, I’ll probably be working on LitFest at midnight after I’ve seen the debut of my play.

And I stil don’t know what to wear.