Kennedy's Disease Association

A Public Benefit, Non-Profit Organization

"I had just been diagnosed with Kennedy's Disease and had no idea what it was or what to expect. The KDA maintains an excellent website that explains the disease. I found details on symptoms, the cause, and exercises I could do to maintain my strength."

 

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.

read more

 

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

read more

 

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.

read more

 

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

read more

 
 
DonateNowbuttonpng


Whatsnew-button

Updateyourcontactinformationbutton

WaystofindaCbutton

 

button join-the-kda-today

Home

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. October 30, 2018 - BVS857 Clinical Trial Yields Mixed Results. To learn more, click here.
  2. October 28, 2018 - Trial Shows Positive Initial Results for IGF-1. To learn more, click here.
  3. 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.
  4. 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.
  5. 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.
  6. 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..
  7. March 16, 2018 - Study identifies potential drug for treatment of Kennedy's Disease. To read the Medical Press article, click here.

 -read more


2. Clinical Trial Updates

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

    Back-TopButton


    3. KDA News

    1. 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!
    2. 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
    3. 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.  
    4. June 24, 2018 - Board member Jameson Parker is named Vice President of the Kennedy's Disease association. To view Jameson's profile, click here.
    5. 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!
    6. 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.
    7. 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 dimsumgivesome.com  to see the details. We hope you can make it!
    8. 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.
    9. 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.
    10. 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.

     read more


    4. Other News and Information

    1. 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.
    2. 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

    read more

    Back-TopButton