Dear Friends,

Today is April 16, 2026 and this year has been an amazing journey.  

As you may know, we lost our $300,000 grant to continue the planned research projects for 2026.  Truthfully, I was… lost.  Our previous work was funded through family donations and, well, they don’t last forever.  And fundraising? I’m not so good at that either.

So I’ve sat with my head in my hands, once it actually hit me in March of 2025, wondering and praying over what I should do.  

Nothing came to me.  The worry was… life-consuming.  I wasn’t sleeping or eating. Well, that wasn’t working out too well either. Dare I say my hair started falling out, and my body was reeling from the stress. I sat for many, many days, head still in my hands, asking, praying for guidance; tell me what I should do.  What do I do now? I was worried beyond my control.

Then one day, an HMERF patient from the UK reached out to me via WhatsApp. (She calls me “Casey’s mum”… how could I not just love her?) We started talking.  She told me about all the people she was meeting who had HMERF in their families.  Their cousins, fathers, mothers, grandparents, children… I know it may sound corny, but I was feeling so helpless. She told me about how she’d gone to the muscular dystrophy clinics they have in the UK and how she got no response.  No one seemed to know anything about HMERF, never mind ever having even heard of it.  She wrote: “I feel like HMERF people are just left behind; the invisible muscular dystrophy people.”

And then it came.
The idea that was to energize me and continues to energize me these many, many months later.
We need to reach the UK and Wales.  That’s where she lives.  In the UK, as you probably know, healthcare is socialized, and they’ve built these muscular dystrophy centers where patients actually get help. (Yes, that’s a slight for the US.  We have centers.  But the ones I know of, they’ve never heard of HMERF and… they’re not quite interested in learning about it either.)

But I digress.

As a result of this wonderful woman’s continuing emotional support for me while I was just lost in the wilderness, Alliance Against HMERF is launching in the UK and Wales through a charity that is registered with the UK’s Charity Commission.  This foundation, GivenGain, then forwards the donations made on our behalf to us in the US.  People in the UK can get their tax deductions for their donations, and Alliance Against HMERF gets support from the HMERF and MD community in the UK and Wales. (It’s also registered in Switzerland, so Hey Swissies!  You can help out too!

(I have to add a note: my son had a ’Swissie’, a Swiss Mountain Dog named Maggie.  She was a wonderful dog and I miss her to this day.  So I have a soft spot for the Swiss and their magnificently bred dogs. 💕)

Spreading the news of our upcoming HMERF Registry and the real medical research we’ve funded so we can find a treatment for every HMERF patient… well… It fills me with such excitement that word of our work will get out there!
I will write again soon because a LOT is happening.  
As I write this, I think of you who are suffering through incredible pain, trying to take care of your families and worried about your futures.  I can only promise to keep working as hard as I can to find answers for this  horrible disease.

I keep you in my heart and prayers,Chris