• by George Simpson , Featured Contributor, September 26, 2019

September is CMT Awareness Month. But you are not aware of that because almost nobody, anywhere has heard of CMT. Charcot-Marie-Tooth disease was identified in 1886, more than 130 years ago. But there's still no treatment or cure, even though CMT affects one in 2,500 people, including 150,000 Americans and nearly 3 million people around the world. 

It is an inherited condition that 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. It can cause severe disability — and, in rare instances, even death.

My daughter has it. She will never get better, only worse, because the disease is progressive. I am trying to help fund research to find a cure. I would like you to help.

I do not want you to stop giving to the TD Foundation, nor do I want you to stop Bowling for Breast Cancer or take a pass on anyone else’s Facebook birthday fundraiser. Rather, I want you to send one of the following emails:

To my spouse:

We are so blessed to have children who are disease-free, with unlimited future potential. In gratitude, I am giving $100 for each child to CMTRF to help George help his daughter. 

To anyone who will listen:

It is estimated that The Criminal-Impersonating-Our-President has told more than 10,000 lies since he has been in office. While we work hard to get him the hell out of the White House, let’s make those lies work for something good. So, I have donated per lie to help George help his daughter. 

To the local police:

I would gladly argue before a judge that the light was still yellow by the time I got through the intersection, but rather than waste my time going to court, I am simply sending the fine of $250 to help George help his daughter.

To my children:

I know you don’t think vaping is a big deal and we agreed it is better than smoking, but if you would occasionally watch the news, you would realize that you are in grave danger of a lung ailment that could kill you. If you will stop vaping, I will donate $50 to help George help his daughter. You might also think about donating the amount you will save by not buying another vape.

To my client:

I know I said you were getting back all the money the agency was rebated by media companies, but to be honest, we kept a little of it (well, maybe more than a little). I feel terrible and want to make amends by helping George help his daughter.

To Starbucks:

As much as I love those Salted Caramel Mocha Frappuccinos, I think $5.25 is a little over the top for a cup of Joe (not to mention the calories). So, I am skipping just one of those this week and instead sending $5 to help  George help hisdaughter.

To God:

I know I pledged to tithe and haven’t (10%, really!!!?). Rather than send me on vacation to purgatory, will you allow me to help George help his daughter?

To the U.S. Government:

The NIH invests nearly $39.2 billion annually in medical research. Of that number, ONLY $12 million was spent on CMT in 2018.

Estimates for 2019 and 2020 are $12 million and $11 million. That equates to barely a rounding error of 0.0003% of NIH’s total annual budget.

Meanwhile, NIH spends $112 million annually on multiple sclerosis, although more people around the world have CMT than MS.  CMT is also 3 times bigger than ALS, yet in 2018 NIH spent $83 million on Lou Gehrig's disease. To try and correct this imbalance, I am donating a TON of money to help George help hisdaughter.