As you may know, this year I am focusing my fundraising in support of the CMT Association STAR initiative . CMT is a progressive degenerative neuromuscular disease. The CMT Association in the US is funding and supporting the search for a cure for CMT, primarily Type1A (which I have) which impacts 1 in 5000 people. Along the way the research they are funding is sure to lead to follow on research and exciting initiatives in the search for a cure for the many other forms of CMT. 1 in 2500 people is impacted by some form of CMT, making it the most common but probably least discussed neuromuscular condition there is…
Earlier this year I received an email from the CMTA that another triathlete had recently been diagnosed with CMT. This is the second triathlete I have “met” with CMT, and Joy vonWerder is not only a triathlete, but also a level 1 USAT triathlon coach.
I have corresponded with Joy throughout my build up to doing my first Olympic distance triathlon, and she is super supportive, and is like me keen to help to find a cure for CMT. I am excited that Joy has not only shared her story with me, and agreed to do an interview for my blog, but also that she has recently printed new kit for cycling and triathlon with the CMTA STAR logo. You will find the kit images and details on how to order at the end of this post – and Joy will donate $5 from each article to the STAR initiative.
Thank you Joy for sharing your story, and for helping to build awareness of CMT and support for the CMT STAR initiative to find a cure for CMT.
What type of CMT do you have?
When did you receive your CMT diagnosis?
In February of this year during my visit to the Mayo Clinic in Jacksonville Florida. I knew that I was struggling with weakness and a heavy feeling in my legs. I could no longer do the athletic events that I used to and I noticed my calves were smaller… a lot smaller.
If someone saw you on the street, would they know you had anything wrong with you?
Tough question. I would say no… but many times people ask me if I am limping. I tend to walk kind of heavy.
How would do explain CMT to others?
I pretty much give them stats, it is easier for people to understand. I tell them that it is a neuropothy that presents itself as a nerve loss in the extremities. It affects the legs (primarily) from the knees down and the arms (primarily) from the forearms down. It is actually fairly common, 1 in 2500 people, and is the most common form of nerve loss after diabetes.
I tell them that it is nontreatable and non curable but that since my diagnosis came late doctors are hopeful that my case will remain mild.
If you could describe your approach to living with CMT in three words or three key mantras, what would they be?
Every day… celebrate what you can do not what you can’t do.
Surround yourself with a great support group.
Determine what your limitations are by pushing the envelope.
What does the CMT STAR program mean to you?
When I first heard the terms “nontreatable” and “non-curable”… a wave of dread came over me. The STAR program gives me hope that there are people whose main concern is solving this puzzle and curing this disease.
The STAR program will allow me to help directly influence funding for research and hopeful contribute to helping find a cause and a cure.
Joy’s Triathlon / Cycling Kit
As mentioned in the introduction above, in association with Veloce, Joy has produced triathlon / cycling kit. The kit is available to everyone who would like to order. With Joy’s logo, as well as that of the STAR Initiative, it is a great design.
Available for purchase, and the prices:
$60 Sleeveless Jerseys
$68 Regular Shorts
$75 Bib Shorts
$55 Tri Jerseys and Tri Tanks
$60 Wind Vests
$20 Lycra Arm Warmers
The sizing charts, for mens and womens, are available here , and the specifications for the kit here .
Payment will need to be received by Joy by 24 September to enable orders to be placed.
Thank you again Joy for being so supportive! I personally cannot wait to have new kit to wear with the STAR logo!