Charcot-Marie-Tooth Association Board of Directors

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, either because they have CMT or someone in their family does, they are dedicated to helping people affected by CMT.

Patrick Livney, Chairman and President

I am currently the CEO of Vanderbilt Financial, LLC. Until recently, I was the Managing Director at Vanderbilt Capital Advisors, LLC, and the head of Vanderbilt’s Structured Product Investment Team. Previously, I was a Partner at Asset Allocation & Management Company, responsible for marketing, and from 1986 through 2000, I worked in institutional fixed income sales on Wall Street where I specialized in structured financial products.

In our busy personal and business lives it is often difficult to give back to society and make a difference. Three years ago, I met Patrick Torchia, Charles Hagins, and Dr. Michael Shy. What I quickly realized was that the CMTA is an organization that is streamlined, focused, and dedicated to finding a cure and treatment for CMT patients, of which I am one. After further meetings and discussions with them, I became convinced that their approach was effective and joined the Board.

I’m honored to be involved with the CMTA. The organization has made great strides the last two years, and, invigorated by the Board’s enthusiasm, I hope to aggressively build on the solid foundation already in place at the CMTA.

I look forward to being able to contribute with fund raising in the future, and I feel confident the CMTA will pioneer a material breakthrough with a treatment and cure for all.

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

Dr. Michael Shy, MAB Chairman

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.

Herbert Beron

When our daughter Julia was diagnosed with CMT 2E, my wife and I decided that we needed to become actively involved with the CMTA. Two years ago, we formed “TeamJulia” to participate with Steve O’Donnell in The Swim for the Cure, and since then we have raised in excess of $150,000. I received a BBA in Finance from Emory University in 1986, and I am currently a Senior Vice President for Citigroup Smith Barney. 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.”

Robert Kleinman

I received a BS in Business Administration from the University of North Carolina at Chapel Hill and a JD from Fordham University School of Law. I was admitted to the New York State Bar in 1979, and I am now Chairman, Chief Executive Officer, and General Counsel of AFA Protective Systems, Inc. I am married with two children and one grandchild.

I have been on the CMTA Board of Directors since 2000, and have served as Treasurer of the association as well as liaison to the CMTA medical advisory board. During my tenure with the CMTA I have run golf fundraisers for the organization.

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 when 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 $500,000 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.

Elizabeth Ouellette

When my son was diagnosed with CMT 1A 5 years ago, I made a conscious decision to become an active participant in the CMTA, with the goal of making a significant difference in the lives of my son and others affected by this disease. As a certified teacher with an M.A. in French from the University of Vermont, I taught for many years both in the US and France. Upon moving to California, I obtained an M.A. in Counseling Psychology, a course of study and training proving invaluable in the understanding of myself and others, especially in the realm of pain disorders and disabilities.

My decision to become a Board Member is based upon my enthusiasm and dedication to educating kids, parents and the community as a whole about CMT. Moreover, I have been extremely impressed by the positive outlook, dedication and support of the entire CMTA staff and administration who continuously offer insight, comprehension, up-to-date information and last but not least, unwavering promise. I wholeheartedly believe in the future of this organization and I am proud to be an integral part of it.

Lastly, through my own writing, school-based presentations and various fund-raising events, I know that I can not only build continued awareness of this disorder, but also participate in raising the funds needed for continued CMT study and research, until one day, in the very near future, a cure is found and available to all.

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 a Mineola, New York, law firm.

I served on the Board of Directors of the Rehabilitation Institute, and I have also served as co-chair of the Long Island Cabinet for Israel Bonds for three years and am a member of the Board.

I joined the CMTA because I and other members of my family have CMT, and I hope to be able to help in finding a cure for this debilitating disease.

Jason Steinbaum

Patrick Torchia

I have CMT and I joined the CMTA Board of Directors in 2000. I am committed to helping all people affected by CMT, especially the young, and as a successful businessman, I believe I can make a difference by bringing many years of managerial experience to the organization.

During my tenure as Chairman, my specific goals were to create awareness programs for both patients and physicians, to develop programs to raise funds for research, and to assemble a team of board members and employees who are as passionate as I am about bringing the CMTA to the level needed to produce results that will eventually lead to a cure.

That team is in place. Remarkable progress has been made in understanding the cause of CMT, and the CMTA is funding more research than ever before. I am confident that these advances and our continuing commitment to research will produce significant results and possibly even a cure within the next decade.

I hope each and every one of you is as committed as we are, and that you will do everything you can to advance the mission of the CMTA.