Kennedy's Disease Association

A Public Benefit, Non-Profit Organization

"I am glad to finally see information being made available about this disease.. THANKS for the website"


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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What-is-newSee what has been added or updated since your last visit ...


1. Research Update

2. Clinical Trials

3. KDA News

4. Other News and Information 

1. Research Updates

  1. August 15, 2019 - Efficacy and safety of leuprorelin acetate for subjects with spinal and bulbar muscular atrophy: pooled analyses of two randomized-controlled trials. To learn more, click here.
  2. August 15, 2019 - SBMA Patients are More Likely to be Affected by Metabolic Disorders, Heart and Liver Disease. To view the study, click here.
  3. March 16, 2019 - The European Neuro Muscular Centre lay report "Towards a European Unifying Lab for Kennedy's Disease" was published. The purpose of the lay report is to share information on the workshop with the lay community, i.e. the patients and their representatives.To view the report, click here.
  4. February 25, 2019 - Muscle and not neuronal biomarkers correlate with severity in spinal and bulbar muscular atrophy. To learn more, click here.
  5. October 30, 2018 - BVS857 Clinical Trial Yields Mixed Results. To learn more, click here.
  6. October 28, 2018 - Trial Shows Positive Initial Results for IGF-1. To learn more, click here.
  7. October 26, 2018 - Safety, tolerability, and preliminary efficacy of an IGF-1 mimetic in patients with spinal and bulbar muscular atrophy: a randomised, placebo-controlled trial. To learn more, click here.
  8. September 2, 2018 - Systemic Delivery of MicroRNA Using Recombinant Adeno-associated Virus Serotype 9 to Treat Neuromuscular Diseases in Rodents. This study focuses on identifying a miRNA that directly downregulates expression of the mutant AR transgene and on designing a safe and efficient mode of delivery of the miRNA to the spinal cord and skeletal muscle of our disease mouse model. For onformation on this study, click here.
  9. August 30, 2018 - Carlo Rinaldi, associate professor and clinician scientist at the University of Oxford in England, was awarded an MDA Development Grant totaling $120,000 over 3 years to study the role of androgen receptor isoforms in SBMA. The MDA just announced it is funding 34 new research projects totaling 9.9 million dollars. For more information, click here.
  10. May 17, 2018 - The Kennedy's Disease Association (KDA) is planning to fund one or more research grants this fall to further the understanding of the pathological mechanisms of Kennedy's Disease. The KDA projects that funding for each grant will be up to $50,000. Applications from junior investigators and from senior post-doctoral fellows are encouraged. Your proposals must be received by Monday July 30, 2018. The KDA will send a confirmation email within three days of receipt. For information regarding the 2018 grant proposal guidelines and review schedule, click here. Please send your proposals as a pdf file to the following email address: This email address is being protected from spambots. You need JavaScript enabled to view it. and please cc to This email address is being protected from spambots. You need JavaScript enabled to view it..
  11. March 16, 2018 - Study identifies potential drug for treatment of Kennedy's Disease. To read the Medical Press article, click here.

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2. Clinical Trial Updates

There are currently no trials being conducted. For information regarding past trials. Click here


    3. KDA News

    1. August 15, 2019 - The 5th Annual Ed Montie Race for KD will be held on Saturday, September 21st, 2019. To register, click here
    2. May 30, 2019 - SAVE THE DATE - The 5th Annual Ed Montie Race for KD will be held on Saturday, September 21st, 2019
    3. April 5, 2018 - Fun in the Sun and Living Well with KD is the 2019 KDA Conference Theme this year. For more information on this years conference, click here. To register, click here.
    4. March 12, 2019 - The KDA has been notified that there is a SBMA Association (the Patient group of Spinal Bulbar Muscular Atrophy in Japan). To view their website, click here.
    5. January 17, 2019 - SAVE THE DATE. 2019 Kennedy's Disease Conference will be held this year in Orlando, Florida on November 13th to Novemebr 15th, Hope to see you there! 
    6. January 5, 2019 - The 2018 Kennedy's Disease Conference research presentations and photos have been added to the website. To view, click here.
    7. January 2, 2019 - Lou Tudor, long time board-of-directors member and past KDA president, has stepped down from the board. We are sorry to see her go but are so very thankful for the years of service Lou has given to the Kennedy's Disease Association. She has represented the KDA at many fund raisers, medical meetings and other events. She has years worth of newsletters to her credit and has been a regular attendee to the yearly KDA conferences, often in a leading role. Past vice-president and president, in her years of service, Lou has filled just about every role in the KDA.
    8. December 2, 2018 - The Kennedy's Disease Association is happy to announce that Steve Rittmaster has been voted onto the board of directors. Getting to know Steve and his wife Jennifer at the last couple of conferences, we are confident that he will be a great addition to our team! To read Steves bio, click here.
    9. September 27,  2018 - The 2018 Kennedy's Disease Association's preliminary conference agenda is out, To view the agenda, click here! Hope to see you in San Diego!
    10. September 14, 2018 - A HUGE thanks to Gloria & Dennis Kalkowski of Slowlane Guitars for their generous donation of an artistically unique, custom-made guitar to be auctioned at the golf tournament. Dennis who has been diagnosed with KD in his early 40s founded Slowlane Guitars to create a “one of a kind” guitar with total attention to every detail that would be a rewarding experience to play. For more information on Slowlane Guitars. Click here.If you’re interested in putting a reserve bid on this beautiful, artistic musical instrument that will be auctioned on September 29th, please contact Louise Goforth This email address is being protected from spambots. You need JavaScript enabled to view it.  or 281.330.0828
    11. July 24, 2018 - Our 8th Annual KD Golf Scramble will be held on September 29th at High Meadow Ranch Golf Course, Magnolia Texas. You don't have to be there in order to donate to help us find a cure. Be a sponsor and get your name on the Tree of Hope or signs placed throughout the golf event. Thanks to your generosity, last years Golf Scramble raised over $40,000. Help us make our 8th annual Golf Scramble a huge success as we try and find a cure for Kennedy's Disease. For more information, click here.  
    12. June 24, 2018 - Board member Jameson Parker is named Vice President of the Kennedy's Disease association. To view Jameson's profile, click here.
    13. June 10, 2018 - REGITER NOW FOR THE 2018 KDA CONFERENCE in sunny San Diego, California! The conference runs Wednesday, 10/31 thru Friday 11/2/18. Look forward to seeing everyone! To register, click here!
    14. April 7, 2018 - GoFundMe Star Ralph Briones Gives Us a Voice. Ralph Briones is currently at $17,075 of his $15,000 goal! Way to go Ralph! We at the KDA are amazed at your impact. Check out his GoFundMe page to see his story and check out this video he produced that gives us a voice. We are not alone, we are in this struggle together. Hope to see you this fall in San Diego.
    15. March 6, 2018 - The 2nd Annual Dim Sum + Give Some event will be held at the Italian Conference Center in Milwaukee on March 25th. Go to  to see the details. We hope you can make it!
    16. February 3, 2018 - Stephanie Izard hosting pop-up dim sum fundraiser at Duck Duck Goat on February 11th with guest chefs Dan Jacobs and Dan Van Rite, who co-own DanDan, an American-Chinese restaurant, in Milwaukee. The beneficiary of the charity event will be the Kennedy’s Disease Association. For more info, click here.
    17. January 28, 2018 - The 2018 KDA Conference will be held in San Diego, CA. Wednesday, 10/31 thru Friday 11/2/18. We hope you can join us.
    18. January 6, 2018 - The NIH (National Institutes of Health) is collecting DNA samples for a KD study. They are looking for genetic markers that impact the progression of KD and our quality of life. If you have been diagnosed with Kennedy's Disease, please contact Angela Kokkinis at This email address is being protected from spambots. You need JavaScript enabled to view it. and she will send you a saliva collection kit.

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    4. Other News and Information

    1. February 11, 2019 - February 28, 2019 is Rare Disease Day. To learn more about the day and events connected to the National Organization of Rare Disorders (NORD), Click here.   
    2. August 30, 2018 - This year, NORD’s 2018 Rare Diseases and Orphan Products Breakthrough Summit will take place October 15-16 in Washington, D.C. For more information, click here.
    3. January 25, 2018 - February 28th is Rare Disease Day. The global theme for Rare Disease Day 2018 is research.  Research brings hope to people living with rare diseases. To learn more about Rare Disease Day. Click here

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