It should come as no surprise that I am about to write this. I told you a long time ago that I chose the charity that I support – the Charcot Marie Tooth Association – after deliberation, research and discussion with its staff. I decided in 2009 that I needed to become an advocate for a cure for CMT – the nerve disease that impacts 1 in 2500 people, including myself, my family, and so many others.
This past weekend I was so fortunate to be able to attend the CMTA conference – the volunteer workshops as well as the patient-family conference where the medical professionals spoke.
It was transformational for me. And a complete affirmation of my choice to fully put my weight behind the CMTA.
Do you know that the CMTA has been the driving force in forming the international consortium for medical professionals who practice and research into all aspects of CMT?
Do you know that the CMTA is the driving force behind cutting edge research into finding a cure for CMT? Sure, you may not have today’s target type – CMT1A – but did you know huge strides are being made to line up the research required for funding for a cure for Type 2, and eventually as many of the 51 types of identified hereditary neuropathy as researchers can manage?
Do you know how close we are to a world without CMT? We are SO CLOSE. So close that we can almost smell success wafting across the world from the labs in Germany where compounds are being tested in animal models – compounds which have shown to diminish myelin protein production – compounds that may someday be used stop the damage to our nerves. We are so close that we need to start identifying people to participate in human drug trials.
We are so close that every time I see you supporting another organisation claiming to be the best hope for CMT I want to scream.
Because when you do that – when you throw your weight behind another charity – you kill a piece of hope. You distract focus from the only organisation that represents all of our best hope for a world without CMT.
We have a lot of work to do, as a community. We have to raise significant amounts of money to keep funding this research. To get drug trials off the ground. To bring in pharmaceutical partners to help us in the quest to end CMT.
So please. Considering the consequences of your actions, think about the distraction from the mission your action creates. Think twice.
Get involved. Email me. Reach out. Help. Support the CMTA.
Because divided we will fall.
And that thought – failing when we are so close – that makes me cry for us all.
Since the date of this original post back in November 2012, further edits have been made. Initially I had written that wearing the jersey of another organisation who claims to be the best of hope for CMT was a devisive action, one that made me want to cry (with rage I might add). I felt that those who wear another jersey should be aware of the choice they make and assess whether or not they are truly supporting an organisation that respresents the best hope for those of us with CMT, or if they are just making an easy choice based on being offered something for free. I edited this piece because my thinking has evolved. Now, I could care less what jersey people wear – after all it is just clothing, and hey, we all like free shirts. But I still passionately believe that the choice of what to wear needs to be made with full awareness of facts, and with full acknowledgement of the consequences. I know that the single focus charity organisation that represents the best hope for treatment for those of us with CMT is the CMTA. I also know that other organisations provide those of us with CMT tremendous support – from MDA clinics to CMTUK information packs, many charities support those of us with CMT in many different ways. Just choose your jersey wisely.