Leadership and Commitment

The members of the Board of Directors bring a unique combination of professional competence and personal commitment to governing the activities of the CMTA. As business owners, managers, doctors, lawyers, or public servants, they have the expertise to oversee the organization’s operations and formulate its strategy for funding research and finding a cure. As individuals, whether they have CMT or someone in their family does or whether they are engaged in CMT research, they are dedicated to helping people affected by CMT.


Herbert Beron

Herbert Beron

Secretary

When our daughter Julia was diagnosed with CMT 2E, my wife and I decided that we needed to become actively involved with the CMTA. In 2007, we organized our first charity swim event to raise funds for the CMTA. Now 12 years later, “TeamJulia” has raised approximately $1 million for the CMTA’s STAR research program.

I have sat on the Board of Directors since 2007 and served as Chairman from 2011-2015. I welcome the opportunity to help the CMTA achieve even greater heights. Our organization has accomplished much in the past 12 years through dramatic expansion of the CMTA Branch network and awareness campaigns, and we’ve made tremendous progress in our research initiatives with the NIH and, most recently, with incredible gene therapy collaborations.

That being said, there is still much more work to do. I’m hopeful that we can build on the momentum that we’ve generated and take the CMTA to an entirely new level. I look forward to meeting leaders and members at meetings and patient/family conferences throughout the country, and working closely with the Board and CEO to raise research dollars to further our goal of finding a cure!

I received a BBA in Finance from Emory University in 1986, and I am currently an Executive Director in the financial services industry at a major Wall Street firm. It is my heartfelt goal that the CMTA achieve its stated mission: “to find a cure, to create awareness, and to improve the quality of life for those affected by Charcot-Marie Tooth.”


Gilles Bouchard

Gilles Bouchard

Chairman

My history with CMT dates back to 2001, when my son Yohan was diagnosed with CMT1A. I have been involved as a volunteer advisor to the Board since 2007, when I organized the strategic retreat in Palo Alto where the STAR (Strategy to Accelerate Research) program was initially defined and launched. Like so many of us, I have been excited and delighted to see how fast the STAR program has progressed since then. Yet, with such hope comes a growing sense of responsibility to the 2.8 million people affected by CMT. This is why I agreed to join the Board of the CMTA and assume the position of chairman in March 2016.

On the professional side, most recently I was chairman and CEO for Livescribe, a venture-backed company that is the leader in the smartpen market. Previously, I was the CEO of Opnext, a maker of fiber optic components. The majority of my career (17 years) was at Hewlett-Packard, working my way up to executive vice president of Global Operations and CIO, reporting directly to CEOs Carly Fiorina and Mark Hurd. I hold an MS in engineering from UC Berkeley and an executive education degree from Harvard Business School.

I was born in France, grew up in the Alps, and love cycling, mountaineering and skiing. Yohan also introduced me to horseback riding so I am an aspiring cowboy now!


David Coldiron

David Coldiron

I am currently the director of mortgage lending at Legends Bank. My wife, Christina, and I live in Nashville and have two daughters, one of whom has CMT.

Our daughter, Hazel, was diagnosed with CMT in November of 2015. Christina and I were so fortunate to find the CMTA, which has provided us with medical contacts and welcomed us into their caring community. It is an honor to join a team that is doing so much to support those impacted by CMT as well as leading the charge for development of treatments.


Dr. Thomas Dubensky

Dr. Thomas Dubensky

I am the chief scientific officer of Aduro, a publicly traded biotechnology company engaged in the clinical development of immunotherapeutic approaches to treat advanced cancers. My background is in virology, immunology, molecular biology and tumor biology and my expertise is in advancing basic science discoveries to early phase clinical trial evaluation of immunotherapy drug candidates. I have been personally affected by CMT and am strongly committed to helping the CMTA advance compelling clinical candidates to clinical testing.


Laura Fava

Laura Fava

I had the pleasure of meeting CMTA board members and staff at the CMT Patient/Family Conference in Stanford in September 2014. I was so impressed with the level of dedication, organization, and spirit, and the progress the CMTA had made in such a short period of time. I met so many wonderful people, in particular a mother all the way from Australia, who had a little boy with type 4E. I walked away from the conference feeling like I had to contribute in some way, not only for my own family, but for everyone struggling with this disease. I was delighted and honored when some months later I was invited to join the board. I am lawyer in Toronto, Ontario, and my hope is to contribute to the CMTA through fundraising and helping to initiate CMT Canada.


Gary J. Gasper

Gary J. Gasper

Treasurer

I became involved in the CMTA when my 5-year-old son was diagnosed with CMT 1A. As a resident of the Washington, D.C. area, who works as a lawyer and lobbyist, I spent time contacting some of the top medical professionals in our Nation’s capital, including researchers and doctors at NIH and the Children’s National Medical Center. After doing my own research, I truly believe that the CMTA is the organization that will make a difference in finding a cure and/or effective treatment for CMT.

I firmly believe that the CMTA should focus primarily on a mission of fundraising to support research to find a cure for CMT. As it does so, efforts should be made to assist those who currently suffer from this disorder. My personal goal is to do whatever I can to help assist doctors and researchers to find an effective treatment and cure in time for my son to realize the benefits while he is still growing.


Alan Korowitz

Alan Korowitz

My wife Ruth and I became involved with the CMTA shortly after our son Zachary was diagnosed with CMT in 2008. We have committed ourselves to finding a cure for a disease that affects over 2.8 million people.

I am the Executive Vice President of National Platforms for iHeartMedia, based in New York.

My hope in joining the Board of Directors is simple: to assist in increasing awareness of the disease and the Association so we can raise the necessary funds to finance the important research being done today. By working to grow our base of support in the New York area, I hope to further the Association’s ongoing efforts to achieve a cure in the not-so-distant future.


David Norcom

David Norcom

I firmly believe that the time is ripe through the significant advancement in medical research to focus on a cure for CMT through gene therapy. I am joining the board now because I want to be present when that day comes and serve up a toast of celebration when we cure CMT.

I have more than 37 years of experience in investment analysis, asset allocation and capital markets research. I was the founder and chairman of Norcap Advisors, LLC, an investment manager in Dallas with over a decade of experience in the alternative asset space with risk management and capital preservation as the foundation of its investment strategy. Prior to founding Norcap in 2004, I spent 20 years as the director of consulting groups at Smith Barney and Morgan Keegan & Co. in Dallas. I also served on the New York Stock Exchange Disciplinary Hearing Board for 10 years and was president of the Association for Professional Investment Consultants for two years. I earned a BBA in management economics from Texas A&M University and a Master of Divinity from Austin Presbyterian Theological Seminary. I am also a certified graduate of the Pension Fund Management Course at the University of Pennsylvania’s Wharton School of Business.


Steven O’Donnell

Steven O’Donnell

I have served on the Board of Directors of the CMTA since 1998. My brother and I both have CMT and my goal in joining the Board of Directors has been to speed up research by increasing the funding to find a cure. In 2001, I started an annual “Swim for the Cure” fundraiser in the Chesapeake Bay, which has raised over $1,000,000 for CMT research. It is my hope that one day no family will have to deal with the fear of passing the disorder on to subsequent generations.


Christopher Ouellette

Christopher Ouellette

I am the Executive Vice President of Operations and Service at Alpha Analytical, an environmental analytical testing laboratory in Massachusetts that employs more than 300 people. I have extensive experience in business operations, strategic planning, production and quality management and executive leadership, and I plan to put it all to work for the CMTA.

My engagement with CMT began when my nephew was diagnosed with CMT 1A in 2001. As a result, my focus is to proactively develop and support initiatives that will increase CMT awareness, to enhance the everyday lives of those with CMT and to help fund the search for a cure for CMT. In 2014, I initiated the first annual Cycle 4 CMT event in Vermont in support of the CMTA’s STAR Program. The Cycle 4 CMT event has become an annual cycling fundraiser that has engaged over 750 participants resulting in a three-year fundraising total of $450,000. This event has also provided the foundation, structure and support for launching the CMTA’s annual Cycle, Swim and Walk events around the country. I look forward to actively supporting the ongoing fundraising efforts of the CMTA and all initiatives that complement the mission and vision of the association.


Elizabeth Ouellette

Elizabeth Ouellette

My involvement with the CMTA began in 2003 when my son, Yohan, was diagnosed with CMT1A resulting from a de novo mutation. The devastating news inspired me to become involved with the CMTA to spread awareness, fund a treatment, and bring people with CMT together on many different levels.

A certified teacher with a BA in French and Russian, an MA in French and a Fulbright scholarship, I taught for many years both in the US and France. Upon moving to California, I earned an MA in counseling psychology, a course of study and training that has proved invaluable in helping me to understand and connect with my son and others, especially in the realm of pain disorders and disabilities.

Over the years, I have worked to create the CMTA branch network, increase the number of patient/ family conferences nationwide, launch the first ever CMT Awareness Month, and develop a school-based presentation to teach kids about CMT. I’ve also spoken at many CMTA community events and have created programs to engage and bring CMT specialists, doctors and professionals in contact with the people they serve.

Today, I enjoy speaking at branch meetings, working with the CMTA’s Centers of Excellence, leading the CMTA’s Advisory Board, participating as a CMTA advocate in the Inherited Neuropathies Consortium, and writing my blog about all things CMT: www.bestfoot4wardblog.com. As I continue to spread CMT awareness and raise much-needed funds for research, my hope is to see the CMTA put an end to this progressive disease.


Kevin Sami

Kevin Sami

I am personally affected by CMT and am honored to join the board of the CMTA. I am currently an investment analyst in New York City, where I also serve as president of the Medhat F. Sami Foundation and as treasurer of Musical Chairs Chamber Ensemble, a Staten Island arts organization. I have previously worked as an investment analyst at Apis Capital Advisors and served on the steering committee of Families for Safe Streets, a New York traffic safety organization. I hold a BBA in finance from the University of Wisconsin-Madison, and I hope my extensive business and non-profit experience will allow me to be a productive member of the Board of Directors of the CMTA, an organization whose mission to develop treatments and support patients and families continues to have a tremendous impact on the lives of those affected.


Phyllis Sanders

Phyllis Sanders

I taught remedial reading in the New York City Public School System for 15 years before graduating from Brooklyn Law School in 1984. I am now a partner in The Sanders Law Firm in Mineola, New York. I served on the Board of Directors of the Rehabilitation Institute, which helps teach work skills to mentally challenged adults so that they can obtain jobs. I have also served as co-chair of the Long Island Cabinet for Israel Bonds for three years and was a member of the Board. I am a member of the Board of Directors of the Nassau County Holocaust and Tolerance Center, whose goal in to use the lessons of the Holocaust to teach tolerance. I joined the CMTA because some members of my family and I have CMT. I want to help find a cure for this debilitating disease.


Dr. Steven Scherer

Dr. Steven Scherer

I am a Professor of Neurology at the University of Pennsylvania. For 30 years, I have investigated what causes peripheral neuropathy and what can be done about it; CMT has been my focus for the last 15 years. I have grants that enable my students to investigate the causes of CMT from a biological point of view in the laboratory. I see patients who have CMT in my clinic. I teach medical students, graduate students, neurology residents, and patients about CMT. I have written many papers about CMT, for physicians, scientists, and patients. My increasing involvement with CMT naturally developed into an ever larger association with the CMTA, and I have always had an excellent relationship with the staff, the board, and the patients that they have referred to me. Our mission is the same-to unlock the secrets of CMT, to provide patients with treatment and effective therapies, and, ultimately to find a cure for CMT-goals which I believe I can help the CMTA accomplish through my participation as a member of the Board of Directors.


Dr. Michael Shy

Dr. Michael Shy

Scientifically, I am interested in understanding the biology of neurodegenerative diseases so that rational treatments can be developed for these devastating disorders. It is my belief that when we understand the biological cause of degenerative diseases like CMT, ALS or Parkinson’s Disease then treatments for many other neurological diseases can be developed as well. I believe that CMT provides the best group of disorders to achieve these aims because the genetic cause of many forms is already known. Therefore, it is possible to discover how mutations in these specific genes cause nerve degeneration and develop treatments to reverse the degeneration. I must also say that I have grown to respect and admire the many patients we see that live with CMT, and that has become a true added bonus to my work.


Dr. John Svaren

Dr. John Svaren

SAB Chairman

I am an Associate Professor in the Department of Comparative Biosciences at the University of Wisconsin, and I serve as Director of the Cellular and Molecular Neuroscience core at the UW Waisman Center, where my laboratory is located. Since 2000, I have focused my research program on the genetic basis of peripheral myelination and the disruptions found in peripheral neuropathies such as CMT. I have had the pleasure of working with the CMTA to lead one arm of the collaborative STAR project, which is focused on understanding the regulation of the Pmp22 gene in order to develop novel assays for drug screening at the NIH. During this time, I have been very impressed with the vision, outreach, and leadership of the organization. Although my primary focus has been on CMT1A, I welcome the opportunity to broaden my perspective and help in the development and implementation of a multi-front strategy directed at other forms of CMT.

Special Advisor to the Board


Bruce Chizen

Bruce Chizen

After many years of living with undiagnosed CMT, I finally learned the cause of my symptoms. I was referred to the CMTA for a better understanding of the disease and I have relied on the organization ever since. The help that the CMTA provided and the potential of finding a cure for the next generation gives me reason to assist the organization in any way I can. I am a technology executive, the former CEO of Adobe Systems, and sit on a number of private and public boards including Oracle Corp. and Synopsys Inc.