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."

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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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Raising Awareness for Kennedy's Disease

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Kennedy’s Disease Downunder

Australia's Facebook Group

Click on the logo:  KD-Australia

Canada

Below are some services and associations available for our brothers and sisters to the north.

 

Living with a Disability

The Government of Canada offers a variety of services and financial benefits to assist people with disabilities and their families. Service Canada has compiled a list to help you find benefits that may be right for you. Click on the logo below to learn more.

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·       To learn more about the Registered Disability Savings Plan follow this link:   RDSP

·       To find a Service Canada office near you, follow this link:  Service Canada Locator

 

Kennedy’s Support Group – Canada Facebook Group

Click on the logo:  KDCanada

 

 

 

 

Canada

Below are some services and associations available for our brothers and sisters to the north.

 

Living with a Disability

The Government of Canada offers a variety of services and financial benefits to assist people with disabilities and their families. Service Canada has compiled a list to help you find benefits that may be right for you. Click on the logo below to learn more.

·       To learn more about the Registered Disability Savings Plan follow this link:   RDSP

·       To find a Service Canada office near you, follow this link:  Service Canada Locator

 

Kennedy’s Support Group – Canada Facebook Group

Click on the logo: 

ResearchThe KDA's focus in recent years has been to provide “seed-money” to post-doc and other young researchers who do not currently have the funding or credentials to receive funding from larger organizations such as the National Institute of Health or the MDA. This “seed-money” normally provides the researcher an opportunity to further his/her research while giving him/her time to apply for other grants.

The KDA's Scientific Review Board reviews all applications with a focus on research projects that are specific to or could be used in finding a treatment or cure for Kennedy’s Disease.

As of November, 2018, the KDA has awarded $1,233,214 in research grants to help find a cure or treatment for Kennedy's Disease.  To see all of the research grants funded, click here.

"I received a pilot grant from the KDA early in my career at a particularly vulnerable time for young scientists, before receiving my first grant from the NIH. The foundation's support made a big impact, helping enable us to generate a mouse model that we continue to study to understand disease mechanisms and therapeutic targets."

Andrew Lieberman, MD PhD
University of Michigan Medical School

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To view the 2018 KDA conference's agenda, click here! 

2018 KDA Research Presentations

KD Research in London UK

Kennedy’s Disease Support Groups

Tips and Tricks for Swalling Issues with Kennedy's Disease

Jameson Parker's Tips and Tricks

Using Exercise and other Physical Therapy Interventions to Optimize Functional Mobility

Don't Forget the Women

KDA 2018 Conference Attendees

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 Men with Kennedy's Disease

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Researchers

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Carriers, Wives and Significant Others 

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The 2017 KDA Conference, November 8-10 at the Holiday Inn in Old Town, Alexandria, VA. To view the meeting's agenda, click here. To view photo's and some pictures, go to our Facebook page by clicking here.

2017 KDA Research Presentations

Genetics Review and Reproductive Options in Kennedy Disease - Alice Schindler, MS & Heather Montie, PhD

PSC/CRISPR Platform at the Montreal Neurological Institute - Lenore Beitel, PhD

Kennedy Disease and Pulmonary Considerations - Noah Lechtzin, MD, MHS

Kennedy Disease 101 - Ed Meyertholen, PhD

Maximizing Functional Independence - Kathy Farrell, MS, OTR/L

Metabolic Changes in SBMA - Dr. Andy Lieberman

Nutrition and Kennedy’s disease - Marnie Dobbin, MS, RDN & Angela Kokkinis, BSN, RN

PolyQLength-Specific Engineering of a HiPSCModel of SBMA Using CRISPR-Cas9 system - Xia Feng, PhD

Silencing of Mutant AR Co-activators as a Therapeutic Approach - Manuela Basso, PhD

Speech and Swallowing in KD: Soup to Nuts - Dr. Neil C. Porter

 

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 2016 KDA Research Presentations

Understanding KD - Dr. Cynthia Jordan

Update from the NIH on KD - Dr. Kurt Fischbeck

Androgen Receptor Modifications - Dr. Janghoo Lim

Therapeutics Development for KD - Dr. Kurt Fischbeck

Excercise in KD - Dr. Christopher Grunseich

Pain Management in KD - Dr. Raghav Govindarajan

 KDA 2016 Conference Attendees

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Men with Kennedy's Disease

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Researchers

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Carriers, Wives and Significant Others 

 

  

 

Previous KDA ConferencesClick-here