As I reach this milestone birthday year, I find myself reflecting on the other life-changing moments I’ve experienced: graduating high school, getting married, giving birth to my children…
And in 1997, discovering I had Charcot-Marie-Tooth disease.
I knew the only way I was going to have a fighting chance against this still unknown disease was to give CMT a voice. A loud voice!
My vision was to create a foundation dedicated to increasing awareness and leading research funding efforts to find a cure for CMT. I wanted to bring CMT from out of the shadows so the world would recognize CMT as a household name. The Hereditary Neuropathy Foundation was founded in 2001.
HNF has made great strides in CMT awareness and research funding. Since we launched our Therapeutic Research In Accelerated Discovery (TRIAD) in 2007, we have funded 1.5 million in research dollars.
We also have a thriving community of Team CMT leaders, caregivers, and medical professionals who tirelessly work around the clock to spread our message and raise funds to provide CMT patients the care and attention they need.
And we have the brave and inspiring CMT patients who are willing to share their stories and experiences in our CMT Inspire Community. Some are taking it a step further and participating in our Global Registry For Inherited Neuropathies (GRIN): a registry that collects clinical and genetic information on patients diagnosed with inherited neuropathies. This registry is crucial to help advance therapy development for these debilitating disorders.
While we have come a long way, there is still much work to do.
I set a goal that by the time I turned 50, we would have a cure for CMT.
There is no cure today as I blow out my 50 birthday candles. I still must wear my leg braces. I still succumb to falls and broken bones. I still have to depend on others to do simple, everyday tasks.
But I still keep going. Because there is no other choice I’ve left for myself.
I don’t have the luxury of waiting around for the mysterious “someone else” to find a cure.
It is up to me. It is up to you. It is up to US.
I don’t expect everyone to do everything. But each one of us can do something.
We live in the digital age where a Tweet and Facebook share can take the voice of one and turn it into a voice of thousands. We can share our stories and connect with CMT communities around the world. We can lead global fundraising campaigns for CMT research.
A collective social voice, an active CMT community, and robust fundraising efforts will grab the attention of the industry influencers we need to achieve our goals.
But we can’t do any of this successfully unless each of us does something.
Am I fired up about this? Yes! I am relentless in my pursuit to find a cure because I believe with all my heart that a cure is within our reach.
So here it is….my 50th birthday wish:
Give $10 to HNF by texting CMT to 501501.
Grab your phone. I know it’s right by your side.
Text2Give 10$ and support CMT patients, their families, and caregivers to ensure that one day there are treatments and cures for CMT.
You can also donate online here.