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. 

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

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.

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.

Contact Lou Tudor at  loutudor@yahoo.com

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.

Contact Sean Blasko at: smblasko@gmail.com

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 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. 

Ron Wiker - Past Vice President - 2004-2009

Patrick Griffin - Past Vice President - 2000-2002

Annette Clipman - Past Vice President, Fundraising Coordinator - 2001-2003

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.  Contact Kathy Weber at:  kitkatpop@yahoo.com 

Paula Goynes, Wives/Significant Others Support Coordinator

Paula 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.  Contact Paula Goynes at:  PGGoynes@Verizon.net