A message from Herb Beron, Chairman of the CMTA Board of Directors ...
I just wanted to take a few minutes to tell you about all of the exciting things going on within the CMTA! It's been a whirlwind two months for me since being named Chairman of the Board. I've visited Support and Action group meetings in Westchester, NY, and Freehold, NJ, (thanks Beverly and Mark!) and attended Melinda Lang's Art de Cure fundraiser in Albany (which netted $9,000 for the CMTA!). I've spoken with over a dozen SAGFs and several individuals who have successfully raised money for the organization. My wife and kids wonder how I'm finding time for everything (my juggling has improved dramatically!) but, all kidding aside, it's been an incredibly fulfilling beginning.
There are so many things to be excited about going on within the CMTA. The Board of Directors has considered our job to be threefold (fundraising/research, increasing awareness, and patient advocacy), and I'd like to spend a minute to share with you exactly what we are doing in each of these equally important areas.
Firstly, our research is ready to enter an important new phase – namely testing FDA-approved compounds on CMT1A-afflicted laboratory models! The high-throughput screening (HTS) that we undertook through our partnership with the National Institutes of Health (NIH) yielded three FDA-approved compounds that were able to down-regulate PMP22 levels in cellular assays. The CMTA Board has approved testing two of these compounds in two doses each at a cost of $100,000 per dose! We will be updating results as they become available.
In addition, we have recently received a large private donation which is earmarked for the launch of STAR's type 2A program which includes the creation of cellular assays with Dr. David Chan at Cal Tech and the creation of a type 2A animal model at the University of Miami under the direction of Dr. Stephan Zuchner! On the Type X front, the CMTA has approved a pilot program facilitating a study of how Athersys' CMT X iPS cells may affect a CMT X animal model.
Secondly, to further enhance the power of CMT awareness, Advisory Board member Jason Steinbaum is attempting to have the Obama Administration proclaim September 2012 National CMT Awareness Month!
Lastly, on the patient advocacy side – so much to talk about!! We now have 50 Support and Action Groups (with 8 more coming on board!), a new PT program by Physiotherapy Associates, (click here), and an expanded Centers of Excellence network. Board Member Elizabeth Ouellette was recently added to the NIH's Patient Advocacy Group committee as a liaison for CMTA! We've expanded our Facebook presence (click here), our YouTube channel (click here), and our Youth Discussion Groups (click here).
In addition, we have grown our Advisory Board to include professionals from EVERY aspect that affects our patient community (geneticist, PT, OT, psychologist, orthotist, etc). We want to be able to provide our members with specialists in every area (so if you ever have questions, you can come to the CMTA to help you find answers!!).
Whew – a lot on our plate!! For all we've accomplished thus far – we still have so much more to do!! So, when you consider making a charitable contribution, please remember the CMTA. We need your help now more than ever to fund all of our exciting initiatives that I've outlined above!
I look forward with great anticipation to what will prove to be a fantastic 2012, and I thank you for all you have done (and continue to do) for the CMTA!
Herbert A. Beron
Chairman of the Board