You are not alone in your quest for a treatment and cure!
Kennedy’s Disease (KD) is a rare disorder and initial KD symptoms and age of onset vary. Initial symptoms often include fatigue, muscle cramping, spasms, tremors and muscle weakness. Bulbar (neck and throat) symptoms can occur causing difficulty with swallowing and speech. Symptom onset is most common in in men in their 30s but can vary from 4 to 78 [Natural History]. Disease progression is generally slow. CAG repeat length can inversely correlate with the age of symptom onset.
The Kennedy’s Disease Association (KDA) mission is to provide information, resources and support for those living with Kennedy’s Disease, including caregivers, spouses, significant others and families.
Connect with Others!
- Connect with others via our monthly group support calls via Zoom. For information regarding these groups and see support groups in different countries, click here
- Our KDA Forum forum provides an opportunity to ask questions, share information, and build relationships. To Access the Forum click here.
- The KDA is on Facebook. Check us out and follow us! Find our page by clicking here.
- The KDA is on LinkedIn. Connect with us by clicking here.
- Attend a KDA Conference - The KDA held their first annual annual conference in 2001 and has held conferences every year to bring men, woman and researchers together to share and learn about living with Kennedy's Disease. To see upcoming and past conference information, click here.
2024 KDA Conference Videos
The KDA held its 2024 annual conference from November 2-4 in Orlando, FL Approximately 250 patients, family members, clinicians, and researchers participated either in person or online. Below are four videos from the conference: Susanne Waite's keynote address, Jameson Parker's talk on "Tips and Tricks," and Ed Meyertholen's discussion of the "Ten Things I've Learned in my 25 Years with KD" and his "Primer on KD Research
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2024 KDA Confere4nce Orlando, FL. Susanne Waite keynote address.
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2024 KDA Conference, Orlando, FL. Jameson's Tips and Tricks
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Ed Meyertholen's discussion of the "Ten Things I've Learned in my 25 Years with KD"
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Ed Meyertholen's "A brief introduction to the biology of Kennedy's Disease"
Research & Clinical Trials
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Dr. Montie discusses her research on Kennedy's Disease at PCOM, Jan, 2016
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Dr. Grunseich discusses Kennedy's Disease clinical trials at the NIH, Bethesda, MD
Personal Stories
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Rare Disease Awareness and Kennedy’s Disease
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KD and the Waites
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Treatment Diary of Mr. Mattheis
Other KD YouTube Videos
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A new handle on Kennedy's Disease IRB Barcelona 2010 Annual Report
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The UK's First Kennedy's Disease Clinic - 20116
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Hand tremor, tongue and perioral fasciculation in a patient with Kennedy disease
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Biologist Neville Sanjana explains one concept in 5 levels of Difficulty - CRISPR
KDA Conferences
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2020 KDA Virtual Conference - Luca Zampedri presented results of a KD patient survey "Priorities in Managing KD Symptoms"
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2020 KDA Virtual Conference - PT Joe Shrader from the NIH presented exercise recommendations for people with KD.
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Dr. Fischbeck summarizes Kennedy's Disease and possible treatments during an RDR conference in May, 2015
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Dr. Beitel talks about animal KD models during 2012 KDA Conference in New Orleans
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Dr. Beitel talks about animal KD models during 2012 KDA Conference in New Orleans
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Dr. Meyertholen explains KD for a layperson during 2012 KDA Conference in New Orleans
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Dr. Meyertholen explains KD for a layperson during 2012 KDA Conference in New Orleans
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Dr. Meyertholen explains KD for a layperson during 2012 KDA Conference in New Orleans
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Sex and all that Jazz: Dr. Romero Sexual disfunction issues for KD men and women. 2012 KDA Conference.
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Sex and all that Jazz: Dr. Romero Sexual disfunction issues for KD men and women. 2012 KDA Conference.
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Dr. Pennuto explains IGF-1/AKT Signaling in SBMA 2012 KDA Conference in New Orleans.
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Re-Visiting KD Free Children - by Cliff Johnston 2012 KDA Conference in New Orleans
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Dr. Poletti explains Small Heat Shock Proteins in SBMA 2012 KDA Conference in New Orleans
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10 Years After - Dr. Meyertholen talks about the KDA and KD Research 2010 KDA Conference in San Diego, CA
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Kennedy's Disease-Free Children through IVF 2010 KDA Conference in San Diego, CA
