A call for support and advice, from George H. Simpson.
When my daughter Anna (pictured left) was 9 years old she had surgery to lengthen the Achilles tendons on both legs. The only part of the operation she liked was that she got to pick pink for the color of her fiberglass casts. Yet her feet and ankles didn’t really improve much and later she had to have major surgery on both feet. Not the way a 16-year-old wants to spend two years of high school.
It was during preparation for the second foot surgery when we first heard of CMT. Quite off-handledly the surgeon said, “Oh yes, this kind of thing is common with kids with CMT.” Huh…. what did you just say? Many visits with orthopedists and neurologists and tests later, we discovered that Anna, in fact, has CMT.
Charcot-Marie-Tooth Disease affects one in 2,500 people (about the same number as Multiple Sclerosis), including 150,000 Americans and nearly 3 million people around the world. It is an inherited condition. It causes progressive deterioration of peripheral nerves that control sensory information and muscle function of the foot/lower leg and hand/forearm leading to significant problems with movement, touch, and balance as it advances. CMT can vary greatly in severity, even within the same family and can cause severe disability and in rare instances, even death.
“I always felt that my body was different, but I normalized the feelings and sensations I had because no one else had the same problems. When I found out I had CMT I put it in the back of my mind and didn’t want to think about it. There was minimal information about the disease, so how was I supposed to understand what I was diagnosed with when many of my doctors didn’t,” says Anna.
It is often misdiagnosed, as common symptoms include tripping, clumsiness, lack of balance and tactile issues are attributable to other diseases. Although Anna had been seen by neurologists and orthopedists throughout her life, it wasn’t until she was in her teens that she was correctly diagnosed. It is estimated that tens of thousands of people have CMT, but don’t yet know it. Steve Snow passed CMT to his daughter and didn’t know it. Five years later, she died.
At the moment there is no cure for CMT and it promises to progress as Anna ages, with the likelihood she will face the need for leg braces and possibly total disability depending on factors that she can’t control and that doctors can’t treat. And she has to think about the chance of passing CMT on to her own children (about a 50-50 proposition).
CMT is not a priority for research. Let’s face it; diseases that affect many more people are better bets for pharma companies because they create a larger market for new drugs. Everyone is touched by cancer in some way; not as many are exposed to the effects of CMT. But unlike cancer and other severe medical conditions, we have the tools to cure this disease; we know what causes it, so scientists say we can solve it.
About 18 months ago I volunteered to help raise money and increase awareness of CMT.
One of the biggest challenges to raising awareness about CMT is its name. When I ran it past the experts at True North Inc, a New York agency that specializes in helping non-profits, the first thing they suggested was a name change to something that sounded “less dental.” I got really excited when I read that Christina Olson, the subject of Andrew Wyeth’s iconic painting “Christina’s World”, is now said by most doctors to have CMT (she was thought to have polio). Perhaps I could rebrand CMT to be “Christina’s Disease” and build the kind of familiarity that ALS got from being called Lou Gehrig’s disease. We cleared with first hurdle with the Artists Rights Society (which merely wanted money) but ultimately the Andrew Wyeth family turn down the idea. How sad, how selfish.
Meanwhile I searched for folks with CMT that had enough public profile to become a spokesperson for the CMTA. The press loves celebrities, especially those who reveal a medical condition in order to help raise awareness. But, the few performers I found had no interest in revealing their condition for fear it might limit their future employment. Whether a well known CEO or a famous comedian, no one has been willing to be the “face” of CMT to the world.
I worked up some Facebook ads to draw attention to the fact that you could pass CMT to your kids without knowing it, but they have yet to run so I can’t say they will generate donations any better than past efforts.
Here is what I know: More progress on a potential treatment/cure has been made in the past year than at any time since CMT was identified in 1886. Studies in two rodent models of CMT1A not only stopped the progression of the disease, but also showed improvements in some symptoms. Now, funds are urgently needed to prepare for human trials. We need to get the word out.
* If you are in the media business and have inventory to donate, hit me up.
* If you are on the creative side and have some ideas to help me raise awareness, drop me a note. This is a hard one and I can use every idea you can come up with.
At the moment there is a $140,000 Challenge Grant for CMT research. GIVING NOW WILL DOUBLE THE IMPACT OF YOUR DONATION! To participate in the Challenge, visit www.cmtausa.org/1achallenge. I thank you, my daughter thanks you, as do all of those whose suffer from this devastating condition and those who work toward its eventual eradication.
– – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – –
George H. Simpson
Simpson launched his public relations business in 1986. He states: “In nearly 30 years, I have worked for scores of new media operations including content providers, all manner of online targeting firms from behavioral to semantic to contextual, ad exchanges, mobile ad networks, vertical ad networks, ad serving companies, and others with a play in online advertising. Notable clients have included TACODA, BlueKai, Real Media, AOL, CondeNet, Advance Internet Newspapers, Scripps Networks, NetShelter Technology Media, Hachette Filipacchi New Media, Tremor Media, Flixster, ChaCha, Vizu and many more.
“Before starting my own business, I was with NEWSWEEK for 13 years in marketing and corporate communications from 1972 to 1985 and was Vice President of Corporate Communications with SIMON & SCHUSTER for a year in 1985 and 1986.”
His current clients include: Adaptly, Affinity Answers, Connexity, Inc., Simulmedia.