Kennedy's Disease Association

A Public Benefit, Non-Profit Organization

"Kennedy's Disease can be a lonely existence in many ways, but the KDA makes me feel I'm not alone, thank you."

The 2016-2017 KDA Officers and Board of Directors

 The Kennedy's Disease Association is an all volunteer, non-profit corporation

 


Andrew Cassar - President

Andrew_Cassar

The proud father of two young sons, Matthew and Nathan, who keep him busy with sporting activities throughout 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 his departure. A few of the most notable projects the company supplied are Dallas Cowboys stadium, University of Arizona stadium and Texas stadium and Durban stadium in South Africa. Andrew completed the sale of his company to a national firm in Canada in 2011.

Contact This email address is being protected from spambots. You need JavaScript enabled to view it.


Maria Montie - Treasurer

Maria Montie

Mrs. Montie is a Certified Public Accountant and a managing partner at the accounting and consulting firm of ShindelRock in Novi, Michigan. She has a Bachelor in Business Administration and a Masters of Science in Taxation. She is well known to KDA conference attendees as she has been a valuable part of the KDA for many years, serving on committees and helping organize and support multiple conferences. 

Mrs. Montie lives in Livonia, Michigan with her husband, Gerry Montie, who has KD. They have a daughter, Katherine, who attends the University of Michigan. Mrs. Montie is a proud, first-generation Greek American who can speak conversational Greek. She enjoys rock climbing, traveling and is a Crossfit enthusiast.

Contact This email address is being protected from spambots. You need JavaScript enabled to view it.


David Yelton - Corporate Secretary

Davidyelton

David Yelton was diagnosed with KD in 2009 and retired in 2011 when his job was relocated to another state. He had begun to positvely adapt to life with KD and did not want to restart the neccessary education process with an entirely new set of medical professionals.

The KD diagnosis was the answer to a very pressing question, why did David feel trapped in a worn-out body? The neuroligist encouraged him to research KD, learn all he could so that he could then help David deal with the condition. The neuroligist's ability to quickly find the correct diagnosis for David was aided by the KDA's early efforts to educate all neuroligists about KD syptoms. David is still his only KD patient. What a blessing it was to find the KDA website. Some questions were answered quickly and others took time and effort but all have helped him take some control over life with KD. This is why he decided to serve on the KD board. Others have given so much hope and direction to him that he feels it is only appropiate to help make sure that this organization continues to grow and prosper.

Since his diagnosis, the family has learned why David's maternal grandfather lived so long with ALS; Grandpa Joe never really knew what put him in a wheelchair. Susequent to David's diagnosis other tests show that one of his nephews, a first cousin and two of his mother's first cousins all have KD This truly shows that KD is a family affair. 

Contact This email address is being protected from spambots. You need JavaScript enabled to view it.


Lou Tudor - Past President (2015)

Lou Tudor

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 had been working for several years in a family owned business that specialized in educational computer software for curriculum development and assessment. Since retirement, she has served as president of a home owners association, and deacon moderator and elder in her church. She and her husband like to spend part of the year in Charlevoix, Michigan where they have a family cottage on Lake Charlevoix.  Lou has also participated in improvisational comedy group.  She 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 This email address is being protected from spambots. You need JavaScript enabled to view it.


Jameson Parker

Jameson_Parker_and_Heidi-Acadia

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.

Contact This email address is being protected from spambots. You need JavaScript enabled to view it. 


Ronald Moffett

RonM

Ronald Moffett was born and raised in the Chicagoland area. He is a graduate of Northeastern Illinois University. After years of displaying Kennedy’s Disease related symptoms and looking for a diagnosis, Ronald was diagnosed in 2011 with Kennedy’s Disease at the University of Illinois, Chicago Department of Neurology.

Ronald has been working for State Farm Insurance for the last 20 years with the responsibility of training, communicating and troubleshooting system roll outs and other company initiatives to agency end users. He has been President of his home owners association for the last 8 years. Ronald currently lives with his high school age son in the northwest suburbs of Chicago. His interests include watching his son’s sports activities, watching professional and collegiate sports, fishing, reading, and computer activities.

Contact This email address is being protected from spambots. You need JavaScript enabled to view it. 


Louise (Noack) Goforth

LouiseGoforth

Louise (Noack) Goforth was directly affected by Kennedy’s Disease when her two brothers, Ted and Billy, were diagnosed with the disease in the late 90s. She attended her first Kennedy’s Disease Association conference in Baltimore, Maryland, with her husband Charley and her brother Billy, in 2002.  It was at this conference that she met many folks and was immediately impressed by the family-like atmosphere and support the KDA sponsored and invoked.

Louise began a career in law enforcement in 1977 and retired as a Criminal Intelligence Analyst in 2002.  Retirement was short-lived when Louise was offered a position she couldn’t refuse working for a private company that has afforded her the opportunity to travel world-wide.  In her role as Global Manager, Louise continues to use her formal education and law enforcement training to advance technological enhancements in an ever-changing industry, as well as training others.

Louise, along with her husband Charley, brother Ed Noack, past KDA Sr. Vice President Murray Williams, and many others, organized the first KDA Golf Scramble in 2011 in hopes of raising awareness for this disease and helping to find a cure.  As preparations begin for the 5th annual KDA Golf Scramble in 2015, this little Texas group is proud to report they have successfully raised and donated over $90,000 to the KDA.

Louise has 4 brothers and 2 sisters, with 2 of her brothers having been diagnosed with Kennedy’s Disease.  They also have 2 cousins afflicted with this disease.  There is no way of knowing how wide-spread this disease is in Louise’s family.  Louise is committed to supporting the KDA, its members and contributing in a myriad of ways to finding a cure!

Contact This email address is being protected from spambots. You need JavaScript enabled to view it.


Todd Allen

ToddAllenTodd Allen lives in Chicago with Sara, his wife a biologist, and their rat terrier, Mouse. For many years they have gardened year round and keep a flock of roughly 10 hens. They recently have embarked on an effort to improve health, seeking nutritious foods and avoiding conventionally produced and commercially processed foods.

Todd is a retired video game programmer who worked for Williams Electronics, Bally and Midway Games starting in arcade gaming and shifting to home consoles such as PlayStation and Xbox. He joined a local makerspace, Pumping Station One, where as been developing skills in metalworking, using microcontrollers and computer assisted design and manufacturing. He has built mobility scooters and other devices tailored to his current and future needs. His recent focus on improving health and fitness has made him optimistic that living with Kennedy's disease is going to be manageable. 

Contact This email address is being protected from spambots. You need JavaScript enabled to view it.

Back-TopButton


Honorary Past Board Members

Ed Meyertholen - Past President (2013)

MeyertholenEd 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 taught 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. In 2012, Ed accepted a position as Assistant Dean and Director of Pre-Health Programs at Georgetown College, Georgetown University, Washington, DC.

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.

Contact This email address is being protected from spambots. You need JavaScript enabled to view it.


Terry A. Waite - Co-Founder

Terry Waite

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 worked as a Sr. Network Engineer at Countrywide Mortgage where he installed and maintained rack mounted network file servers, and associated equipment. 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 passed away on April 10th, 2016. 


Paul K. DeSchamp - Corporate Secretary

Paul DeSchamp

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 two living brothers with Kennedy's Disease.

Paul was in the computer business his entire working 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 in Augusta, Maine called Capitol Computers. Paul retired in 2012 and currently lives in Florida. Paul and his high school sweetheart and wife of over 45 years, Jeanne, have 3 adult sons and three grandchildren.


Mike Goynes - Vice President (2010 to 2014)

Mike Goynes

Mike Goynes served four years in the USAF as an Airborne Electronics Countermeasures Repairman at Keesler AFB in Biloxi, MS; Tyndall AFB in Panama City, FL; and Yokota AB, in Japan.  Afterwards he worked at NASA in Houston, TX on Apollo 15 & 16, and the Space Shuttle Program.  Later, he worked as his company’s Southeast Regional Computer Specialist in Greenville, SC.  In 1980 he developed an interest in Software and became his company's first Regional Software Specialist.  Although he is from Texas, he has lived in several cities in the Southeast including Phenix City, AL, Savannah, Atlanta, and currently lives in the Tampa Bay area of Florida.

After Mike and Paula were married in 1977 they enjoyed bicycling, playing tennis, and bowling, jet skiing, water skiing, snow skiing, and going to the beach where Mike loved to body surf.  Mike became an avid runner two years before his son was born in 1981.  By the time his son was 5, Mike was already finding it difficult to finish the 10K road races that he previously had finished within the top 25%.  He started making excuses for himself like "I need to train longer and harder" or "I need those new running shoes".  When Paula was able to finish races with better times than Mike he knew there must be a problem.  In 1990 his company was sold and the new owners required everyone to have a physical as part of the transitioning.  When Mike had his physical he was told he had no reflexes.  The doctor sent him to a neurologist who performed the dreaded EMG and took a sample of Mike's right deltoid muscle to rule out ALS.  That was when he first learned that he had something known as SMBA or Kennedy's Disease.  It was a very scary time for he and Paula but, after learning of the symptoms, he realized that may have been what his two uncles had but were misdiagnosed with everything from Parkinson's to Huntington’s disease and even "SLOW ALS".

Mike started using a cane in his 50s, then a walker in his early 60s followed by a power chair in his mid-60s.  Mike is the oldest of four brothers and one sister. Only one sibling did not get the defective gene so, for his family, the percentage of afflicted children turned out to be much higher than 50%.

Contact This email address is being protected from spambots. You need JavaScript enabled to view it. 


John A. Coakley - President (2014)

John CoakleyJohn 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 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:

  • 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.
  • . John Church, Westminster, MD (1982 - 2002)

John is Vice President of The Coakley Cane Company.
Contact This email address is being protected from spambots. You need JavaScript enabled to view it.


Bruce Gaughran - President (2005 to 2013)

Vice President - 2003 to 2005

brucegBruce 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 reside in Georgia.


Susanne M. Waite - Co-Founder and President Emerita

Past President and Executive Director - 2000-2005

susanneSusanne 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 WilliamsJ. 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 is now retired from Haliburton and currently resides in Texas.


Others Who Have Served

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


 Paula Goynes - Wives/Significant Others Support Coordinator

Paula GoynesPaula 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.

Contact This email address is being protected from spambots. You need JavaScript enabled to view it.


 Sean Blasko - KDA Legal Council

Sean BlaskoSean 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 This email address is being protected from spambots. You need JavaScript enabled to view it.

 

Back-TopButton

Todd Allen, 51, lives in Chicago with Sara, his wife a biologist, and their rat terrier, Mouse. For many years they have gardened year round and keep a flock of roughly 10 hens. They recently have embarked on an effort to improve health, seeking nutritious foods and avoiding conventionally produced and commercially processed foods.

Todd is a retired video game programmer who worked for Williams Electronics, Bally and Midway Games starting in arcade gaming and shifting to home consoles such as PlayStation and Xbox. He joined a local makerspace, Pumping Station One, where as been developing skills in metalworking, using microcontrollers and computer assisted design and manufacturing. He has built mobility scooters and other devices tailored to his current and future needs. His recent focus on improving health and fitness has made him optimistic that living with Kennedy's disease is going to be manageable.