Gene Trainor, Chair.
Gene joined the board of FSMA in 2003. Gene and Barbara started the FSMA Chesapeake Chapter in 1995 after they lost their daughter Erin to SMA Type I. Over the last 13 years the Chesapeake Chapter has helped to raise almost $1.5 million for FSMA. In his professional life, Gene serves as Administrative General Partner and the Chief Operating Officer for NEA and is responsible for all day-to-day non-investment activities. Prior to joining NEA, Gene was an Executive Vice President and the Chief Operating Officer of Cramer Rosenthal McGlynn, LLC, a New York based asset management firm. A Certified Public Accountant, he earned his BA from the University of Maryland, Baltimore County, and a MBA from Loyola College of Maryland.

Karen Burton, Recording Secretary.
Karen has two sons - Jonathan, who has SMA II and Jeffery.

Jessica Moyer, Chapter Representative.
Jessica became involved with Families of SMA when her son Steven passed away at the age of nine months from SMA type 1. She and her family formed the South Jersey Chapter because Jessica grew up there. Since forming the chapter, they have incorporated Delaware as well (where Jessica now resides). Jessica has three other children; Isobel 8, Blaise 4, and Jake 2. Besides her role as chapter President, Jessica is active in the school organization, the local hospice and also teaches fitness classes. Jessica graduated from Gannon University in Erie, PA with a degree in Business and Sociology.

Natalie Gibbs.
Natalie has a Bachelors Degree in Public Relations from the University of Kansas. She is currently part owner of a swimming pool and outdoor furniture company in Overland Park, Kansas. Natalie has been actively involved with Families of SMA since 1999 and is currently the Kansas City Chapter area President. She has two daughters, Lauren, SMA III and Claire, SMA II. She is currently serving as the Chapter elected board member.

Richard Grossman, Esq.
In addition to being on the Board of Directors since its inception, Mr. Grossman is FSMA's General Counsel. Mr. Grossman is in private practice and specializes in commercial law.

Audrey Lewis.
One of the founding members of Families of SMA, Audrey was the Executive Director and Chairman of the Board of Directors since from its inception to 2006. Through Audrey’s leadership the membership of FSMA has grown to over 25,000. In 2001 Audrey was named United Way of Lake County Volunteer of the Year and received the prestigious Jefferson Award for her continued service to the SMA community. Audrey was chosen in 2003 by Charming Shoppes Inc as one of 100 VOICES winners - a contest celebrating remarkable women from across the nation who raised their voices in their community and created positive change. Audrey was featured as “Women who make a difference” in the April 2004 issue of Family Circle magazine. Audrey has two children, Garett with SMA II and Casey.

Amy Marquez.
Amy was diagnosed with SMA Type 1 at three months of age. Despite being homebound until the 6th grade, Amy went on to pursue her education and earned a B.A. in psychology and criminal justice, and completed a year of graduate studies in gerontology. She has focused her energies on volunteer efforts and improving various aspects of life for those living with disabilities, including being a co-advisor for disabled students at Daley College, an AOL internet tutor, and a public advocate for Service Dog Teams. Amy has worked in a variety of professions, including accounting and consumer credit services. She is married to Steve, and has 2 daughters, Danielle (1999) and Harley (2004.) She has been actively involved with FSMA since 2001, as a speaker at the Annual Conference, Vice President for the Chicagoland and Illinois Chapters, and chairperson for the Adults with SMA Committee.

Jeff Martineau.
With 27 years of real estate experience, Jeff brings the very same drive and passion that fuels his career to FSMA. He brings his business savvy to the Board and is dedicated to provide all that he can to raise money and awareness. He joined the Board in 2004.

Mary McHale.
Mary holds a BS from the University of California, Davis in Human Development and Communications. She received her Masters of Education degree at the University of Vermont in Higher Education Administration. Mary worked for 10 years in corporate consulting in Organizational Strategy and Change Management with Changeworks Inc, and Accenture. Mary has been active in the Northern California FSMA chapter for nearly 7 years. Mary has also worked with Nancy Dindzans, mom of Arianna, Type III to orchestrate their 7th Annual Concert for a Cure. Today, Mary loves being married to her husband Joe and being mom to Danny, Type II, age 7 and Robby (unaffected) age 4. The McHales live in Danville CA.

Adi Rappoport.
Adi holds a BS in Accounting from the University of Florida and is also a graduate of the University of Florida College of Law. He and his wife Shaina are the founders of the Jacob Isaac Rappoport Foundation in memory of their son. He joined the Board in 2004.

Barbara Trainor.
Barbara has a BS in Business Marketing from the University of Maryland. She has been involved with FSMA for over 10 years. Barbara has recently created a major event fundraising manual for FSMA in an effort to help others create their own fundraising events. In 2003 Barbara took over as Chapter Coordinator. Barbara was elected to the national board of FSMA in March 2002.

Jim Gaudreau.
Jim joined the FSMA board in 2006. He attended Merrimack College where he obtained his undergraduate degree in Business Administration with a concentration in accounting. Jim is a registered certified public accountant with the Commonwealth of Massachusetts and is a member of both the American Institute of Certified Public Accountants and Massachusetts Society of Certified Public Accountants. Jim and his wife Sue live in Dracut, Massachusetts and have two daughters, Michelle and Jennifer. Jennifer was diagnosed with SMA in June of 2002 at 9 months of age. Jim also currently serves as president of the New England Chapter of Families of SMA.

Paula Barrett.
Paula has been the secretary for the New England Chapter for three years and involved in FSMA for the last 11 years.  She attended Merrimack College where she received her Bachelor of Science Degree in Business Management and Northeastern University where she received her MBA.  Paula has worked in Human Resources for the last 20 years.   Most recently she was the Manager of Compensation for a Hospital in the Boston Area.   She currently works as a consult for a healthcare organization.   Paula and her husband live in Wakefield Massachusetts and have a daughter Carolyn who has SMA II.

Rocco Arizzi.
Rocco was born the youngest of four children in December 1973 in Stratford, New Jersey. Diagnosed with SMA Type II at 3, a year later Rocco was selected as the MDA Goodwill Ambassador on a state level and soon began a 2-year reign as the National Goodwill Ambassador. At the age of 5, he and his family moved to Texas. At age 16, Rocco was one of 200 Texas high school students chosen to attend the Texas Academy of Mathematics and Science, a 2-year early entry college program, at the University of North Texas. He went on to attain a Bachelor of Science in Electrical Engineering at the University of Texas in San Antonio. While working as an adjunct algebra instructor and tutor at a local community college, he earned his Master's degree in Electrical Engineering at the Florida Atlantic University in Boca Raton. Today, Rocco resides in Alexandria, Virginia and is employed as an electrical engineer at the Naval Surface Warfare Center near Bethesda, Maryland. He is also pursuing his PhD in Electrical Engineering from the Catholic University of America in Washington.

Artemis A.W. Joukowsky III.
Artemis has SMA type III and has been an active fundraiser and advocate for SMA much of his adult life.  He currently serves as the National Campaign Chairman.  He has acted as a venture capitalist, asset advisor, entrepreneur, non-profit activist and film producer for the past 19 years in his professional life. He has formed ten for-profit and eight non-for profit institutions and has been a founding partner in two venture capital funds. He has been part of four companies that have gone public.  Artemis is an activist in the disability movement with No Limits Media, The Gift and Raising the Bar.  If you want to learn more about Artemis click here http://joukowsky.blogspot.com

Kenneth Hobby.
Kenneth accepted the position of Executive Director in 2006. As Executive Director, Kenneth leads and directs Families of SMA’s fundraising, financial and administrative programs. Kenneth has worked with Families of SMA since 2003 as Business Manager assisting with the structure of the Project Cure SMA clinical network and developing industry relationships to support SMA research. Kenneth brings a wealth of industry expertise to Families of SMA, which will be invaluable as we continue to forge additional partnerships in the biotechnology industry to further our efforts to find a cure and treatment for SMA. Prior to joining Families of SMA, Kenneth was Vice President of Business Development and Marketing at deCODE Genetics.

Families of SMA recognizes Sandy Wimsatt for her fantastic contribution to the SMA community and who has given many years of service to the organization.  Sandy came to FSMA over 10 years ago when her son Michael was diagnosed. FSMA has benefited from her professional background as she took on the role of FSMA's Director of Fundraising and also Treasurer. We thank Sandy for her years of service in moving FSMA forward in a manner that brought professionalism and commitment to so many areas of our organization and programs. This was all done as a 100% volunteer with 100's of hours of volunteer service.