Paula Barrett, Chair.
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 consultant for a healthcare organization.   Paula and her husband live in Wakefield Massachusetts and have a daughter Carolyn who has SMA II.

Gene Trainor, past-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.

Jim Gaudreau, Treasurer.
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 previously served as president of the New England Chapter of Families of SMA.

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.

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.

Bob Lockwood.
Bob graduated from the University of Cincinnati with a bachelor of science degree in psychology and retired in September 2008 from Wyeth Pharmaceuticals after 34 years in sales and sales management.  He has been a member of the OKI FSMA chapter since its inception in 2003 and has two grandchildren, Emma and Nicholas Lockwood with SMA Type I.  The OKI chapter has raised over $1 million in that period of time.   Bob is passionate about raising awareness and finding a cure for SMA.  As one of the newer members of the Board, Bob looks forward to serving and fulfilling the vision of FSMA.

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, previously 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.

Melissa Milinovich.
Melissa was diagnosed with Spinal Muscular Atrophy at the age of 2 after several misdiagnoses but has never let that stop her.  She graduated with honors from Wright State University with a Bachelor’s of Science in Business in 2000 and has been on the fast-track ever since.  From being a career woman with the Hewlett Packard Company to a wife to a mother of a 3-year-old little girl, Melissa strives to reach the high goals she has set for herself and never allows anyone to tell her she “can’t” do something.  Despite using a wheelchair for mobility, she lives a very fulfilling life and encourages others to do the same.  She was selected as Ms Wheelchair Ohio 2005 and placed as the 3rd runner up at the Ms. Wheelchair America 2006 pageant.  She focuses on showing people with disabilities that they have the power to change their circumstances for the better if they set their mind to it.  She is very active in the community and works closely with local and state governments on issues that affect the disabled community.

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.

Steven Ragland.
Steven discovered Families of SMA on the afternoon of February 13, 2008--the day his then-20-month-old son Logan was diagnosed with SMA, Type II.  The information and support offered during that time was invaluable and after the shock of diagnosis subsided, Steven and his wife got involved in the Northern California chapter of FSMA--meeting a wonderful network of families and fellow-travelers.  Steven joined the Board of FSMA in 2009.  In the professional realm, Steven is a partner in the San Francisco, California law firm Keker & Van Nest LLP, where he specializes in complex civil and criminal litigation.  Prior to his career as a lawyer, Steven worked in the Washington, D.C., non-profit realm and also taught political science to high school students.  Steven received his B.A. in government from Lehigh University in Bethlehem, Pennsylvania and his J.D. from American University, Washington College of Law, in Washington, D.C.  He lives in San Francisco with his wife, his son Logan, and Logan's big sister.

Richard Rubenstein.
Richard is Attorney and Financial Advisor at Strategies for Wealth based in Rye Brook, NY.  His expertise is in estate planning, elder law, planning for persons with special needs and business succession planning.  He was born and raised in the Town of Yorktown Heights in Westchester County, New York, where he currently resided with his wife Michele and daughter Emma.  His experience with SMA began February 2006 when his son Max was diagnosed with the illness.  Since Max’s death in February of 2009 he has not wavered in his resolve to contribute to the FSMA community.  He participates in nearly all of the local chapter events, makes significant efforts to raise money for the charity and attends all of the national conferences. He has a heartfelt desire to be involved with FSMA as a board member, and though he never expects to achieve complete peace of mind regarding Max’s death, it is his love for Max and his cherished memory that drives his desire and inspires him to make a contribution.

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.

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.

Directors Emeriti:

Audrey Lewis.
One of the founding members of Families of SMA, Audrey was the Executive Director and Chairman of the Board of Directors from its inception to 2006. 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.

Past Board Members:

Families of SMA Would Like to Honor the Fantastic Contributions of Karen Burton and Richard Grossman to the SMA Community.

Karen Burton held the position of Recording Secretary for the Board of Directors of Families of SMA since her son was diagnosed with SMA.  Karen has two sons - Jonathan, who has SMA Type II, and Jeffery.  Karen helped Families of SMA manage our growth from just a few chapters and several hundred supporters to where we stand today – a global community with over 50,000 members and supporters and over 25 chapters.  Karen was also the creator of the “Kids Carnival” that is now held each year and is a special highlight at the national conference.

Richard Grossman has been on the Board of Directors since its inception. Mr. Grossman was FSMA's General Counsel and assisted the organization with many complicated agreements and contracts.  Richard was instrumental as Families of SMA established relationships with universities and pharmaceutical companies around the world.

Both Richard and Karen gave all their time and efforts as volunteers.  We thank them both for helping our community with their amazing talents that they both contributed to help move Families of SMA forward and closer to a treatment and cure.

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.