Kennedy's Disease Association

A Public Benefit, Non-Profit Organization

"Surfing the internet I found the KDA and for me it was like an island for a castaway."

 

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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1. Research Update

2. Clinical Trials

3. KDA News

4. Other News and Information 


1. Research Updates

  1. 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..
  2. March 16, 2018 - Study identifies potential drug for treatment of Kennedy's Disease. To read the Medical Press article, click here.
  3. November 15, 2017 - MDA Announces SBMA Research Grant. For more information, please check out the Living with Kennedy's Disease blog. To view th blog, click here
  4. October 26, 2017 - Thanks to a new, $151,000 grant from the National Institutes of Health, Dr. Heather Montie and her team will spend the next two years creating a preclinical research model using zebrafish, which will hopefully help drive research in SBMA and eventually, help lead to a therapy for patients. For more information, click here.
  5. September 3, 2017 - New Treatment for SBMA approved in Japan. Check out the Living with Kennedy's Disease blog for comments on the study as well as a link to the original article which is written in Japanese. To view the blog, click here.

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2. Clinical Trial Updates

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

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    3. KDA News

    1. 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!
    2. 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.
    3. 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!
    4. 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.
    5. 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.
    6. 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.
    7. December 15, 2017 - The 2017 KDA Conference Research presentations have been posted on the website. To view the PowerPoint presentations, click here. To view photo's and some video presentations, go to our Facebook page by clicking here.
    8. November 25, 2017 - As of November, 2017 the KDA has awarded over $1,000,000 in research grants to help find a cure or treatment for Kennedy's Disease. To view the 2017 award recipients and summaries of their planned research as well as past years reicpients. Click here.

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    4. Other News and Information

    1. 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.
    2. December 11, 2017 - Huntington’s Disease and Kennedy's Disease share a common genetic defect. It was first reported several years ago there is an acommonality between HD, KD and SCA-1. A BBC News report just reported a potentialbreakthrough in the treatment and possible cure of Huntington’s Disease. This appears to be another positive step forward in search of an eventual treatment or cure for Kennedy’s Disease. For more information, click here.
    3. November 15, 2017 - The MDA awarded 13 new research grants worth 3.5 million with one of the grants studying Kennedy's Disease. For more information, please click here

     

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