We love to shine the spotlight on the brave and courageous CMT community members who inspire us and the world around them every single day.
Today, we recognize Ed Moore, a Team CMT leader who is committed to spreading awareness of CMT with a pretty creative and bold fundraising strategy.
Let’s find out more about Ed and how he discovered HNF, what inspires him, his fundraising strategy, and what it was like to open for Cyndi Lauper.
HNF: How did you discover The Hereditary Neuropathy Foundation?
I was searching for more information on Charcot-Marie-Tooth disease after a friend told me she had it. I read about Bernadette Scarduzio’s documentary online, so I ordered the DVD and viscerally experienced the cruelness and devastation of this disease.
Bernadette’s story really made me want to do something about it.
One of the extras on the DVD is an interview with Allison Moore, founder of HNF. She spoke about the HNF website, so I hopped online and explored it. It was there that I joined Team CMT, ordered the singlet, and created a fundraising page. I am committed to helping to find a cure.
HNF: Tell us a little bit about yourself…
Whoa, that’s always a tough one!
Where to start… well, I’m currently a self-employed web designer and developer. I got into the field accidentally when I returned to school in 1997 to finish a Fine Arts degree. I took an HTML elective, got bit by the web bug, and that was that. I also got into IT, and have worn a System Administrator hat at a couple of companies.
And I’ve got a cat. Could I be any more nerdy?
But wait, there’s more…
Before the whole computer thing I played keyboards in a few bands, and even got signed to CBS Records back in the late 80s and early 90s. The most memorable gig was opening for Cyndi Lauper. We spent the next day at the beach with her, Rick Derringer, and the rest of her band. She rode in the back of my pick-up truck with that crazy hair (it was all colors back then), and had a great time. She is one of the nicest and most talented people I’ve ever met. I still enjoy composing, arranging, and performing music in my spare time.
HNF: Where you live?
I live in the beautiful Harbor City of Melbourne, on the Space Coast of Florida. It’s about 20 miles south of the Cape, and I love watching the big rockets go up. The rumble of those mighty engines as they light up the sky… it’s a thrill each time.
I’ve loved rocket launches and space exploration since I was a kid. We would travel with the Boy Scouts to Patrick Air Force base to camp, and then we would watch the launches at Cape Kennedy.
HNF: What are your favorite hobbies?
Bicycling and running on alternate days, with Sundays off for bad behavior. I’ve got a 15-year-old Wal-Mart Huffy mountain bike – I think the thing cost $89 bucks. I recently got involved with a biking group on our local meetup.org, and I really enjoy taking longer rides with them.
For now I run on my own; none of my neighbors wants to get up at 5:30 to go for a morning jog.
HNF: How has Charcot-Marie-Tooth disease changed your life?
I met a wonderful person who has Charcot-Marie-Tooth disease, and it made me focus on giving back, and on returning the kindness that she showed me. I had several debilitating conditions before we met, and now they’re gone, and I believe it was because of her.
- My back was in bad shape. Like, ‘move wrong and be in bed for three days’ bad. I have two compressed discs (L4, L5), and could barely even walk a quarter mile, much less run. A few weeks after meeting her, my back was completely healed. I can run, lift, kick, jump… you name it.
- I was hypothyroid and on Synthroid for years. Two months after we met I went in for my customary six months blood work to check TSH levels. The doc looked at the results, looked at me, and said, “I’m taking you off Synthroid; your thyroid’s kicked in. I’ll see you in a year.”
- I was depressed for a decade and a half. The depression is gone. I’m feeling things I haven’t felt for a long time. I can laugh, and cry, and love, and it feels fantastic! My energy levels are through the roof and the world has colors again.
Yes, this could all be coincidence. Yet aren’t the odds of recovering from this assortment of physical and psychological conditions simultaneously and in such a short time pretty astronomical? Truthfully, if it hadn’t happened to me I wouldn’t believe it either.
So I’ve found another purpose in life as a spiritual being on this planet: in the short time remaining for me to dance here I want to help find a cure for CMT, and to repay her for what she did for me.
Gratitude debt is the best kind of debt, don’t you think?
With help from HNF, I set up a fundraising page here -> http://hnf.donorpages.com/TeamCMT/EdMoore/.
And here’s my offer:
For every dollar you donate, I will do a rep of the exercise of your choice, and put the whole set in a personalized video just for you on YouTube. I’m usually pretty shy, but I’m brazen and shameless for this cause. If you donate $35 I’ll do the work-out shirtless. For $50 I’ll exercise in skin-tight compression shorts. And if you kick in $100 I’ll work out in a Speedo and the FCC may shut me down!
C’mon folks, make me sweat!
HNF: What suggestions can you give others who know people with CMT?
It’s tough to tell how hard Charcot-Marie-Tooth is on a person from the outside. Learn more about it, about its effects, symptoms, and progression. Be alert for signs of fatigue, cramps, and pain. Be mindful of muscle weakness and balance issues, and of the emotional swings that come from having a nervous system slowly going haywire. If you are close to anyone living with CMT, offer massages, and help with stretching and exercise.
And most of all, keep the faith that a cure exists – it has just not yet been discovered.
HNF: What’s a favorite quote of that you think of often?
“Hold on tightly, let go lightly, and never cut what you can untie.”
It’s a mash-up of two quotes, which I think can be attributed to Richard Carlson and Robert Frost.
Thank you so much for letting me ramble on, and for making it so sweet and simple to help.
And thank YOU Ed for being part of HNF’s ever-growing community of CMT heroes!
If you would like share your story on living with CMT, we’d love to hear from you!
Please contact us at firstname.lastname@example.org