2012 Board of Directors
The Kennedy's Disease Association is a
100% volunteer, non-profit corporation.
Bruce A. Gaughran - President - 2005 to present
Vice President - 2003 to 2005
 Bruce A. Gaughran has over thirty years of experience in Logistics and Transportation management. In 2003, he retired from Weyerhaeuser Company where he most recently served as Vice President of Logistics for their Fine Paper Business located in Valley Forge, Pennsylvania. Previously, Bruce served as President and Chairman of the Board of Green Arrow Motor Express, Vice President and General Manager of Goodway Transport, and Director of Sales for Home Transportation.
Bruce was diagnosed with Kennedy's Disease in 1997 after exhibiting symptoms for twenty years. He also has two brothers with KD. Bruce joined the Kennedy's Disease Association in 2001 as an associate. He and his wife, Cindy, reside in Georgia. Bruce has two grown children and two grandchildren.
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Terry A. Waite - Founder, Treasurer, Executive Director, and
Director of Web Operations - 2000 to present
 Terry A. Waite co-founded the KDA along with his wife, Susanne Waite, and Patrick Griffin in 2000. Terry was diagnosed with Kennedy's Disease in 1997. His journey of diagnosis and lack of information drove him to seek out information and create a personal Web site where he shared information with others seeking it. That Web site has evolved into the Kennedy's Disease Association's main form of communication with others.
Terry is currently on full-time disability. His most recent position was a Sr. Network Engineer at Countrywide Mortgage where he installed and maintained rack mounted network file servers, and associated equipment. He then was promoted to a project management role in his last few years where he coordinated the relocation of the data center with over 400 servers. Most of his working career was spent in computer networking. He spent eight years in the United States Air Force. 4 of those years were spent as a Telecommunications Specialist working with Top Secret Crypto messaging. His last 4 years in the Air Force were spent on a special test team testing a new weapon system. Terry has been past-vice president of Camelot Homeowner's Association.
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John A. Coakley, Vice President - 2003 to present
 John A Coakley, Sr. joined the Kennedy's Disease Association as a board member to help the KDA achieve its mission. He was diagnosed with Kennedy's Disease in 2001 but has exhibited symptoms for 40 years. He has been married to Mary Reiter Coakley since 1966. She is the wind beneath his wings as well as his best friend. He has four grown children and an ever increasing number of grandchildren
John's is the Chief Information Officer at Coakley Williams Construction Company in Gaithersburg, Maryland. He has over 38 years experience in the business and construction industry with an unexcelled knowledge of mechanical systems, having designed and built over 30 million square feet of specialized space. He also has an extensive background in Business Development and sales.
He attended Loyola College and has a B.S. in Business Administration. His professional affiliations include: ASHRAE Association of Energy Engineers, Associated Builders and Contractors State of Virginia, Class "A", Master HVAC State of Maryland NIABOM, and Design Build Institute of America.
John was the founder, President and CEO of John A. Coakley & Associates, Inc. (1982 - 1992): a $120 million dollar mechanical contracting firm. He built the idea that "people are more important than things" into a successful company with 160 employees. National Award winner for New Building Construction and Historic Building Renovations, and nationally known for expertise in the Design/Build Construction arena.
John also sits on the Board of Directors for:
- Mission of Mercy, Emmitsburg, MD (1999 - present) This non-profit provides free Medical & Dental to over 12,000 patients per year at 13 sites in MD, PA, and AZ via 38' mobile Doctor's offices.
- St. John Church, Westminster, MD (1982 - 2002)
John is Vice President of The Coakley Cane Company
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Mike Goynes - Vice President
 Mike Goynes served four years in the US Air Force as an Electronics Warfare Repairman. He worked at NASA in Houston repairing the Space Shuttle simulator computers and then moved to the Southeast where he has lived for the last 33 years. Mike's career has covered all aspects of electronics and computer hardware and software.
In the early 1980s Mike ran 10K road races while living in Greenville, SC. By the mid 1980s he was slowing down considerably and by the late 1980s was unable to finish a race without walking a good part of the way. He was diagnosed in 1990 with SMA III at Duke University. In 1995, he was diagnosed with Kennedy's Disease at Emory University, in Atlanta, using the genetic blood test for the CAG repeat sequence.
Mike is the oldest of four brothers and one sister. He currently lives in Florida with his wife, Paula, who is also active in the KDA. They have one son who currently resides in Washington, DC.
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Paul K. DeSchamp - Corporate Secretary - 2005 to present
 Paul DeSchamp was born in Quincy, Massachusetts. He moved from Massachusetts to Augusta, Maine in 1974. He was diagnosed with Kennedy's Disease in February, 2001 after exhibiting symptoms for two years. After his diagnoses he found the KDA on the internet and became very interested and involved with the KDA. Paul has been instrumental in the forming of local chapters of the KDA. Paul has three living brothers, all with Kennedy's Disease.
Paul has been in the computer business all his life. His career started in 1967 with General Electric as a Systems Analyst in the Boston area. In 1970 he took a position with Honeywell Information Systems selling mainframe computers in New Hampshire. In 1974 he moved to Augusta, Maine where he was responsible for the selling and supporting of computers sold to the State of Maine. Paul left Honeywell in 1983 to start a Personal Computer Dealership called Capitol Computers, which he continues to operate today. Paul and his high school sweetheart and wife of over 36 years, Jeanne, have 3 adult sons.
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Ed Meyertholen - Member at Large
Ed Meyertholen went to Boston College where he graduated with a Biology/Chemistry major. He then attended graduate school at Purdue University and received his Ph.D. in biology in 1982. After holding faculty positions at several universities he settled in Austin, TX where he teaches Cell and Molecular Biology, Genetics and Physiology at Austin Community College. In 2005, Ed was awarded a sabbatical leave and was able to do research on Kennedy's Disease in the lab of Dr. Diane Merry at Thomas Jefferson University in Philadelphia. Ed is also a member of the Scientific Advisory Board of the KDA. Ed and his wife, Pat, have been married for 30 years and have two daughters.
Ed was diagnosed with KD in 1999 when he was 45. Since having been diagnosed, he has taken up running and has completed five marathons, including the Boston Marathon in 2004. Ed has tried to use his running as a means of raising money for the KDA.
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Lou Tudor - Member at Large
 Lou Tudor joined the Kennedy’s Disease Association in 2005, after her 32 year old son was correctly diagnosed using genetic blood test results. Her father also had this disease, but was misdiagnosed in the early 1960’s, first with Amyotrophic Lateral Sclerosis, (also known as ALS or Lou Gehrig’s Disease) and then with Spinal Muscular Atrophy (SMA). In 2007, Lou’s 54 year old male cousin reported he had just been correctly diagnosed after she informed him of the genetic blood test available.
With a background in nursing and a B.A. in human services and communications, Lou has traveled extensively and lived in Michigan, South and North Carolina, California and Florida. She currently resides with her husband, Bill, married since 1967. She also has a daughter who was born in 1970.
Lou retired from full time work when she moved to Florida in 2004. She still assists her husband in sales of educational software and content, is the past president of her local homeowners association, is the Deacon moderator at her church and is a member of a non-denominational bible study group. She enjoys boating, reading and playing bunko with her gal pals. Lou believes a sense of humor creates positive energy and is a gift to be nurtured.
Because Kennedy’s is listed as a rare disease, not enough funding is available for research. Lou is committed to increasing public awareness and raising the money necessary to find a treatment and cure for Kennedy’s and other neuromuscular diseases.
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Sean Blasko - Member at Large
 Sean Blasko became aware of Kennedy’s Disease when his Uncle, Mike Goynes, was diagnosed in 1995. Sean first became involved with the KDA when he competed in an Ironman triathlon in Australia to raise money for KDA research. He then joined the fundraising committee and continued to hold annual fundraisers. Sean joined the KDA Board of Directors in 2010.
Sean was born in San Antonio, Texas and later moved to Austin where he received his B.S. in Mechanical Engineering in 2001 from the University of Texas. Sean later attended University of Texas School of Law where he received his J.D. in 2008. Sean currently lives in San Antonio and his legal practice is focused on tax, estate planning, and intellectual property law.
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Jameson Parker - Member at Large
Jameson first learned of KD after his older cousin had endured years of testing and uncertainty before receiving this rare diagnosis. Within a few years, in his early 30s, Jameson began to experience the symptoms of KD and received his own diagnosis. Soon after this he attended his first KD conference. His eyes were opened as many of the men with this diagnosis still lived active and fruitful lives.
Jameson has two children and is joyfully married to his sweetheart Heidi. He is involved in his church, enjoys competitive chess and loves to travel and spend time with his extended family. With 10 years in scientific research and development in industries such as space science and alternative energies, Jameson left his engineering career to embrace his calling as an educator. Jameson currently works as a high school physics teacher in an urban district in Connecticut. He has a B.S. in Physics, an M.S. in Education and is involved in multiple leadership positions within his school district.
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Andrew Cassar - Member at Large
 The proud father of two young sons, Matthew and Nathan, who keep him busy with sporting activities throghout the year. Andrew was diagnosed with KD in 2007, served in Canadian Forces Reserves from 1984 to 1992. He attended Humber College and studied Business Management until 1989. He founded the LSC Group of companies in 1997 and was President and CEO until December of 2010 when he resigned from the positions. LSC specializes in the design and manufacturing of aluminum products to the construction industry and employed over 80 people at the time of my departure. A few of the most notable projects the compay supplied are Dallas Cowboys stadium, University of Arizona stadium and Texas stadium and Durban stadium in South Africa. Andrew completed the sale of my company to a national firm in Canada in 2011.
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Honorary Past Board Members:
Susanne M. Waite - Founder and President Emerita
Past President and Executive Director - 2000-2005
 Susanne M. Waite co-founded the KDA along with her husband, Terry Waite, and Patrick Griffin in 2000. Her interest in Kennedy's Disease began when her husband was (after two misdiagnoses) finally, correctly diagnosed with Kennedy's Disease. She has set out to help others with KD gather and obtain needed information, educate others regarding the disease and find a cure.
Susanne has been in underwriting, sales, and marketing management of both personal and commercial lines insurance for over fifteen years and holds both California Fire/Casualty and Life/Health insurance licenses and has completed three Chartered Property and Casualty Underwriting segments (CPCU). She also holds a California Real Estate license She currently is a Wholesale Insurance Broker. Her past position consulted over 40 Aon Corporation owned insurance managing general agents, managing general underwriters, third party administrators and various insurance agency support service companies in their marketing strategies and implementation.
Susanne holds a baccalaureate degree in English from California State University, Northridge and has been past-president of Camelot Homeowners Association.
J. Murray Williams - Senior Vice President - 2003 to 2010
 J. Murray Williams was born in Ontario. He was correctly diagnosed with Kennedy's Disease in October 1999 after exhibiting symptoms for about 10 years. Murray found and joined the Kennedy's Disease Association in 2001.
Murray traveled Canada and Europe until settling in Alberta Canada in 1974. He moved to The Netherlands in December 1996, working in the North Sea as a (Underbalanced Drilling) UBA Coordinator for a major oilfield service company. Murray currently lives in Texas where he holds a position in Halliburton Energy Services as a Global Advisor for Underbalanced Drilling. Murray has been working in the oil industry since 1979.
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Ron Wiker - Past Vice President - 2004-2009
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Patrick Griffin - Past Vice President - 2000-2002
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Annette Clipman - Past Vice President, Fundraising Coordinator - 2001-2003
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Joseph A. Grimes III - Past Vice President - 2002-2003
Committee Participants (Volunteers):
Kathy Weber, Proceed Partners Coordinator
 Kathy Weber resides in California. She became involved with the Kennedy's Disease Association because her son-in-law lives with KD. She is a frequent purchaser of goods through Proceed Partners and has an interest in growing the selection of companies and products as well as keeping track of the Proceed Partners' accounting.
Kathy is currently employed as an office manager for a law firm which includes numerous duties including bookkeeping, accounts receivable and accounts payable. She will utilize these skills in her role as Proceed Partners Coordinator.
Kathy encourages all visitors to the KDA site to make purchases they would normally make anyways, through the Proceed Partners section of the KDA Web site, where the Proceed Partner will send the KDA 5-10% of the total purchases made through links from the KDA Web site.
Click here to go to Proceed Partners now.
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Paula Goynes, Wives/Significant Others Support Coordinator
 Paula Goynes and her husband Mike live in Florida. They are very grateful for the information they have received and the network of friends they now have as a direct result of the Kennedy's Disease Association.
Paula volunteered to take the position of Significant Others Support Coordinator because she remembers the fears and confusion, and the sense of helplessness, that she dealt with in the weeks and months after she and Mike realized that a simple, annual physical exam had changed their lives forever.
Paula works for a CPA firm in Florida. She has worked with people from all socio-economic and educational levels and feels that perhaps her greatest asset in this position is her genuine concern and caring for others.
Paula hopes that these qualities, as well has her own continuing experience as a "significant other" for the "World's BEST Husband" can help her to help others deal with their own issues with KD.
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