Kennedy's Disease Association

A Public Benefit, Non-Profit Organization

"I am very glad to see that you have added the personal stories, they are a great help. They give an outlook on what to expect with such a disease. It makes me proud to see people who are willing to express and share their stories with the world, keep up the good work!"


The KDA's mission is to inform, support, educate, fund research, and find a cure for Kennedy's Disease 


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Kennedy’s Disease (spinal and bulbar muscular atrophy) is an adult-onset “X” linked inherited disease with symptoms usually beginning to appear between the ages of 30 and 50.

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The Kennedy’s Disease Association has worked to educate others about this lesser-known disease and to support clinical research efforts.

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It takes an enormous amount of money to fund research…more than any of us can afford alone, but together, we are capable of great accomplishments.

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It is passed on from generation to generation in families worldwide. Males generally inherit the disease symptoms and females are the carriers.

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Byron Kropf Byron Duane Kropf passed away Friday, January 4, 2019, surrounded by his love ones, from complications of pneumonia.  Duane was born in the state of Washington to Byron and Beth Kropf.  Shortly after that they moved to Colorado where he spent a majority of his life until he retired to winter in Yuma, AZ and summer in Hyrum, UT.

Duane graduated from Central High School in Grand Junction, Colorado.  He was a devout member of the Church of Jesus Christ of Latter Day Saints, in which he served an LDS mission in western Canada and served in many church callings over the years, including Sunday School President.  He worked for Coors Brewing Company as an industrial mechanic and retired from Trigen Energy in 2000.

Duane was an avid outdoorsman who loved spending time fishing, hiking, camping and most of all hunting in which he claimed a few Pope and Young honors.  He loved to mine for gold and was a true rockhounder.  Others looked to Duane to lead ATV rides through the AZ desert. He was a gifted wildlife artist. Duane was a friend to many different types of people.  He could talk to leaders of the church one day and be out panning for gold and talking to toothless miners the next.  Everyone liked him.

Duane had many stories to tell and his children loved to sit and listen to them.  He did everything with precision and they didn’t want to disappoint him.  He was good at carpentry, welding, designing the irrigation system and estimating the cost of remodeling the barn in Utah.  He came within a few dollars of his estimate when the project was completed.  He loved to paint with his fishing and painting buddy, spending time in the Tetons sitting and painting together.  He made knives and built his own long bows.  He taught others how to make their own bows.  He seldom got angry.

He taught his children how to hunt and took them deer, bear and antelope hunting. He was also a trapper.  He knew his way around the mountains, but would get lost in any big city.

In 1996, Duane was diagnosed with Kennedy’s Disease.  His first thought was “Why me?”  But then he changed his thinking to “Why not me?” The doctor told him he would be in a wheelchair in 3 years.   Instead he volunteered for trial studies to help find a cure for this disease. He became more creative in ways to help stay active and planned ahead.  He built ramps before they were needed, built lifts on the pontoon trailer and camper so he could continue doing what he loved.   A couple of years ago, he sold the camper and pontoon, but he proved the doctor wrong because although he used a walker, he was still walking 23 years later.  Even though the disease limited his abilities, he never complained or allowed it to limit his activities.

Duane married Rosie in March of 1995 and they spent 24 wonderful years together, traveling, camping and going on ATV rides.

Duane was blessed with five children Janeece (John) Noel, Mesquite, NV, Adam Kropf (Christine), Hyde Park, UT, Hillary Lundahl (Jason), Hyrum, UT, and Zak Kropf (Daylarie), Hyrum, UT from his first marriage, and Justin Yeager, his stepson who he considered his own from his marriage to Rosie.

Duane was an amazing man who was loved by all and will be truly missed.  He was always willing to help someone and even in death he continued to help someone by being a skin tissue donor to aid burn victims.

In lieu of flowers, the family asks that any donations be sent to the Kennedys Disease Association, P.O. Box 1105, Coarsegold, CA 93614-1105 or donated online at


2016TerryW2Terry Allen Waite was born October 2, 1961 in Tarzana, California and went to be with our Lord and Savior on April 10, 2016.

He loved his wife, family and friends deeply. He also loved his dogs, many cats, and horses. He enjoyed gardening, jet skiing or captaining his boat, snorkeling, photography, socializing with friends and genuinely helping others when he could. 

Terry served in the Air Force for eight years, stationed in Frankfort, Germany and Nellis Air Force Base in Las Vegas, NV. He had top secret clearance and translated important military information. He was honorably discharged at the level of Sargeant. He then went on to work as a Sr. Computer Network Engineer at Harris Corp, Raypak, and Countrywide Mortgage before having to “retire” disabled over seventeen years ago.

Terry was Co-Founder of the Kennedy’s Disease Association ( in year 2000 along with his wife, Susanne Waite, and Patrick Griffin. He served as the Treasurer for 16 years.

He was blessed to be able to do many things others dream of, such as traveling to the Caribbean, Europe, Mexico, Canada and throughout the United States for pleasure. He also was adventurous and daring! He went sky diving, repelling from a 180 foot drop inside Mercer Cavern and cave crawling, tandem hang gliding over Ocean Beach in San Francisco, SCUBA diving off the coast of Cozumel, Mexico, river rafting the Kern, and so much more – even after his disease started taking his physical abilities away from him.

Terry courageously fought the deterioration from Kennedy’s Disease for over 20 years and was an inspiration to many, as he suffered his pain and frustration in dignity and with a positive attitude. He always was helpful and purposeful right up to the last minutes of his life when he was preparing the ingredients for that day’s dinner.

He met his wife, Susanne, in July 1988, and married her on September 23, 1989. He loved her with all his heart, as she loved him. He cherished her and always took care of her to the best of his ability.

He is survived by his wife, Susanne Waite, Mother, Ernestine Gasteiger, sister, Jaime McKinnis, Brother William Waite, Nieces and Nephews. His father, William Roscoe Waite, and brother, John Roselle, preceeded him in death.




SALEM - Frank "Pineapple" W. Barton Sr., 71, of Salem, died at 7:30 a.m. Saturday, July 18, 2015 at the Cleveland Clinic following an illness.

He leaves his wife of 45 years, Betty (Miller) Barton; his son, Frank W. Barton Jr. and his wife, Kate, and two grandchildren, Olivia and Eleanor; his daughter, Angela (Barton) Kibler and her husband, Chris; and many close friends and family.

He was born in Manila, Philippines on Jan. 22, 1944 to parents Angelina Searles and the late Frank Barton. Surviving siblings are Frances (Searles) Wilson, Larry Searles, Linda (Searles) Kubilus, Gloria (Searles) Burmeister and Diana (Searles) Fodor.

At the age of 18, he came to the United States and enlisted in the United States Marine Corps. After serving a tour as a sergeant in the Vietnam War, he met the love of his life, Betty, at the bowling alley and they were married in 1970 at St. Paul Catholic Church in Salem. While working at General Motors, Frank and Betty started a family and continued to reside in Salem.

Frank had a passion for photography, historic muscle cars, firearms, and spending time with family and friends. Known as a straight shooter with a big heart, Frank's sense of humor and loyalty gained many friends and touched many lives over the years.

He was a member of St. Paul Catholic Church, Perry Lodge #185 F. & A. M., the Salem Hunting Club and the UAW.

A funeral mass will be held at 11 a.m. Thursday, July 23, 2015 at St. Paul Catholic Church with Father Robert Edwards officiating. Calling hours will be held Wednesday from 5 to 7 p.m. at the Stark Memorial Funeral Home. Burial will be at Grandview Cemetery with military honors provided by the Salem Honor Guard.

The Barton family suggests memorial contributions may be sent to the organization, which supports research for the neuromuscular disease, which affected Frank. Contributions can be sent to Kennedy's Disease Association, P. O. Box 1105, Coarsegold, California 93614-1105.

ThomasOneilTom O’Neill, 67 of Rochester died with his wife at his side on Saturday, January 30, 2016 at Golden Living West Nursing Center, following a long battle with Kennedy’s Disease.

Tom was born on August 1, 1948 to William E. and Loretta (Fitzgerald) O’Neill on the family farm. Growing up on the O’Neill family farm in Marion Township, he attended grade school at Simpson, MN and graduated from Rochester John Marshall High School in 1966. As a youth, he was active in 4H. He was especially proud that in 1965, his American Saddlebred horse, Java won the overall championship at the Olmsted Co. Fair. Tom served during the Vietnam War in the US Marine Corps from October 1966 until October of 1969. He was in the Tet battle of 1968 while with the 27th Marine 2nd Battalion H Co. After honorable discharge, he returned to the family farm, where he found farming very fulfilling. On December 2, 1978 he married Nancy K. Foster at St. Bridget’s Catholic Church in Simpson, MN.

Later, Tom had to stop farming due to failing health in 1991. Soon thereafter he became a Commodity Broker for ADM-Benson Quinn for eleven years, which included teaching classes to educate local farmers on Marketing. Tom served on the Marion Township Board for nine years, helped coach little league baseball, and was actively involved in Boy Scouting for many years with Troop 186 (St. Francis Church). Tom always felt he was blessed in all he did, and had no regrets in life. Over his lifetime, Tom lived through some extremely difficult and challenging circumstances. Even in the face of these things, Tom practiced patience in the face of suffering. He is survived by his wife Nancy, his sister Peggy O’Neill of Denver, CO, and his brother Mike (Yvonne) O’Neill of Rochester. He is preceded in death by his son Tyler (2003), his sister Delores Sullivan, his brother Pat O’Neill and his parents.


Earle M. (Bud) Goodnight passed from his journey in this world to his eternal home to be with his Lord and Savior on August 18, 2015 at 9:45am. He was born on February 27, 1936 in Lafayette, Indiana to Melvin Maurice (Bo) and Thelma Abel Goodnight. Bud graduated from Jefferson High School in 1954. He lettered in football, basketball, golf, and track for the Broncho teams. He accepted a football scholarship from Colorado A & M and played varsity football for three years. He also competed on the university swim team and was a member of Sigma Nu Fraternity. Bud later served in the U.S. Navy Air for four years. He attended the University of Denver and graduated in 1961 with a degree in Hotel and Restaurant Management, and Business Management.

In 1961, Bud married Mary Ann Lowell in Sioux City, Iowa. They were parents to Todd, Terri, and Kirk Goodnight. From 1961-1963, he managed the Arapahoe Ski Lodge and Facilities. In 1964, the family moved to Santa Maria, California, where Bud was the general manager of Hunter’s Inn and Restaurants. In 1965, he started the Fidelity Union Life Insurance Agency in Santa Barbara, where he also assisted with coaching football at UCLA, Santa Barbara. He and his family returned to Indiana in 1966 to open a Life Insurance Agency in Muncie. In 1969, Bud bought the Roberts Hotel in downtown Muncie. It soon became the place to go for gourmet dining and live entertainment. In 1970, Bud (being tired of fighting with the unions) returned to the western slope of Colorado where he bought a hunting and fishing lodge. Spruce Lodge was located in the Grand Mesa National Forest which had a restaurant, bar, and cabins. He was the outfitter with four guides leading hunting trips for deer and elk. He loved those years on the hill. He then became a real- estate agent in Cedaredge (at the bottom of the hill) until 1981, when he returned to Denver and became a stock and commodities broker for E .F. Hutton. In 1990, he retired to Long Boat Key, Florida.

Bud returned to Indiana in 1996 when he married his high school sweetheart, Anne Price McKenzie on July 13, 1996. He came out of retirement to help Anne with the operation of four local KFC restaurants. Bud had many favorite pastimes; the mountains, the white sand and blue water were his favorites, and if there was a golf course in the area, that would make it even better. He was a true master at playing bridge, and completing jigsaw puzzles. Bud became a born again Christian in 1990. Jesus Christ, his Lord and Savior, was first in his life giving him the peace he was always striving for. He spent time with the Lord every morning and studied his bible and Christian literature daily. Bud was a member of Covenant Church, Covenant Men's Bible Study, Men's Bible Study Fellowship, and a couple’s bible study. He helped with the start of Harvest Chapel in Lafayette and was a member of the John Purdue Club. He was also involved with the Vinton Woods Club for many years: committed to beautifying the ponds and stocking them with fish.

Bud is survived by his wife, Anne, and his three children, Lowell Todd Goodnight, Terri Ione Goodnight Matheney (husband, John), and Kirk Alan Goodnight (wife, Stacey), and three step-children Jennifer McKenzie Butterworth (husband, John), John McKenzie (wife, Jill), and Jim McKenzie (wife, Sarah). He was devoted to his ten grandchildren: Sydney Goodnight, Adyson Goodnight, Andrew Butterworth, Alex Butterworth, Kyle Butterworth, Meagan McKenzie, Molly McKenzie, Taylor McKenzie, Ali McKenzie and Samantha McKenzie. He is furthered survived by his sister, Janet Goodnight Frey (husband, Garland). He was preceded in death by a sister, Carole Goodnight Reynolds and his parents. Visitation 5-8pm Friday August 21 Soller-Baker Lafayette Chapel 400 Twyckenham Blvd. Lafayette,IN 47909. A Celebration of Life will be held Saturday, August 22 at 11:00 am at Covenant Church, West Lafayette, Indiana with Rob Eyman, officiating. In lieu of flowers, memorial donations may be made to The Kennedy Disease Association, P.O. Box 1105, Coarsegold, California 93614 or charity of choice.