Kennedy's Disease Association

A Public Benefit, Non-Profit Organization

"I am very glad to see that you have added the personal stories, they are a great help. They give an outlook on what to expect with such a disease. It makes me proud to see people who are willing to express and share their stories with the world, keep up the good work!"

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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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Laptop-libraryThe Kennedy’s Disease Association (KDA) has developed several programs and resources to support and make information available to individuals and their families that are directly affected by this rare neurological disorder. 

 

  • Our resources, programs and support includeKDA Information Guides. These guides include topics such as applying for Social Security - Disability, exercise programs for those with KD, and financial planning. 
  • The Kennedy's Disease Brochure provides information on the condition. It is useful for discussing this disease with medical professionals and others.  
  • There are several YouTube videos on Kennedy's Disease research, symptoms, and personal stories that migjt be of interest.  
  • The KDA is on Facebook provides association and personal news as well as updates and links to information of interest. 
  • Other Information and Tips provides an abundance of weblinks and articles on a variety of related subjects including symptoms, other medical conditions, Medicare, medical tips, etc.  
  • The Living with Kennedy’s Disease Blog has articles related to living with Kennedy’s Disease, research, and personal stories. In addition, we haved provide plenty of links and videos to relevant information and ressources related to Kennedy's Disease on the left navigation pane under the category Information and Resources.
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Featured Videos

Dr. Fischbeck summarizes Kennedy's Disease and possible treatments during an RDR conference in May, 2015

2015FischbeckRareDisease

Watch on YouTube

 

 

Rare Disease Day 2017

NORD RareDiseaseDay

Watch on YouTube

 

 


 

1. Research & Clinical Trials

2. KDA Conferences

3. Personal Stories

4. Other KD YouTube Videos

 


Research & Clinical Trials

Dr. Montie discusses her research on Kennedy's Disease
at PCOM, Jan, 2016

2016HeatherMontie

Watch on YouTube

Dr. Grunseich discusses Kennedy's Disease clinical trials
at the NIH, Bethesda, MD

2016ChristopherGrunseich

Watch on YouTube

 

 

 

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 KDA Conferences

Dr. Beitel talks about animal KD models during
2012 KDA Conference in New Orleans

2012LenoreBeitel

Watch on YouTube (Part 1)

Watch on YouTube (Part 2)

Dr. Meyertholen explains KD for a layperson during
2012 KDA Conference in New Orleans

Ed-Meyertholen

Watch on YouTube (Part 1)

Watch on YouTube (Part 2)

Watch on YouTube (Part 3)

 

Sex and all that Jazz: Dr. Romero describes sexual disfunction issues for KD men and women during 2012 KDA Conference in New Orleans

Dr. Maryellen Romero, Ph.D., CIP, a Clinical Neuropsychologist from the Department of Psychiatry and Behavioral Sciences at Tulane University's Health Sciences Center, gave the audience a great presentation on "Sex and All that Jazz" as it relates to Kennedy's Disease and then hosted separate breakout sessions for the men and women.

Watch on YouTube (Part 1)

Watch on YouTube (Part 2)

 

Dr. Pennuto explains IGF-1/AKT Signaling in SBMA Muscle
2012 KDA Conference in New Orleans
 

 2012MariaPennuto

Watch on YouTube

Re-Visiting KD Free Children - by Cliff Johnston
2012 KDA Conference in New Orleans
 
2012CliffJohnston
 
 
 
Dr. Poletti explains Small Heat Shock Proteins in SBMA 
2012 KDA Conference in New Orleans

2012AngeloPoletti

Watch on YouTube

 10 Years After - Dr. Meyertholen talks about the KDA and KD Research
2010 KDA Conference in San Diego, CA

2010EdMeyertholen

Kennedy's Disease-Free Children through IVF
2010 KDA Conference in San Diego, CA
 

2010CliffJohnston

Watch on YouTube 

 
 

 

 

 

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Personal Stories

Rare Disease Awareness and Kennedy’s Disease 

2009RareDiseaseAwareness

Watch on YouTube

 KD and the Waites

2011TerryWaite 

Watch on YouTube

 

  Treatment Diary of Mr. Mattheis

2016HansMattheis

 Watch on YouTube

 

 

  

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Other KD YouTube Videos

 

A NEW HANDLE ON KENNEDY'S DISEASE

IRB Barcelona 2010 Annual Report

IRB-Barcelona

Watch on YouTube

 

The UK's First Kennedy's Disease Clinic - 20116

 2016UK-KDAClinic

 Watch on YouTube

 

 Hand tremor, tongue and perioral fasciculation

in a patient with Kennedy disease

 TongueTremor

Watch on YouTube

 

Understanding Muscle Atrophy (Muscle Loss)

Fitness Exercises 

 2014DrLyoAndDrFernandez

Watch on YouTube

Biologist Neville Sanjana explains one concept in  5 levels of Difficulty - CRISPR
 
NevilleSanjana
 
 
 
 
 
 
 
 
 
 
 
  

 

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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. 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.
  2. February 25, 2019 - Muscle and not neuronal biomarkers correlate with severity in spinal and bulbar muscular atrophy. To learn more, click here.
  3. October 30, 2018 - BVS857 Clinical Trial Yields Mixed Results. To learn more, click here.
  4. October 28, 2018 - Trial Shows Positive Initial Results for IGF-1. To learn more, click here.
  5. 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.
  6. 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.
  7. 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.
  8. 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..
  9. 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

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    3. KDA News

    1. May 30, 2019 - SAVE THE DATE - The 5th Annual Ed Montie Race for KD will be held on Saturday, September 21st, 2019
    2. 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.
    3. 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.
    4. 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! 
    5. January 5, 2019 - The 2018 Kennedy's Disease Conference research presentations and photos have been added to the website. To view, click here.
    6. 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.
    7. 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.
    8. 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!
    9. 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
    10. 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.  
    11. June 24, 2018 - Board member Jameson Parker is named Vice President of the Kennedy's Disease association. To view Jameson's profile, click here.
    12. 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!
    13. 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.
    14. 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!
    15. 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.
    16. 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.
    17. 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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     Hear Ye, Hear Ye...

    held in Alexandria Old Town, Virginia
     
    November 11 – 14
    The conference hotel is the
    Holiday Inn & Suites - Alexandria
    Historic District, close to Washington D.C.
    Minutes to Regan Airport and the Metro Station
    No need to rent a car
    Handicap rooms available
    Free High Speed Internet service
    Free Morning Newspaper
    Restaurant and room service on site
    Walking/scooter riding distance to shopping, art and entertainment
    Excellent dining options
    Room rates include a free Breakfast
    Special KDA room rates are good for three days before and after the conference.
     
    Special daily rate for our conference is $129.00 for a double. $119.00 single
    There are a limited number of handicap rooms available. Please call and make early
    reservations to secure one of these rooms. Mention that you are coming for the
    Kennedy's Disease Conference for our special rates.
     
    Call 800-465-4329 and reserve your room now.
     
    More information regarding the conference will be forthcoming. This is an early
    notice to give you a chance to secure lower rates for your flight and room
    reservations. Traveling alone? We'll be happy to meet you at the airport, help with
    luggage and transfer to the hotel. Just give us advance notice.
     
    We look forward to seeing you in November! This year promises to be an even better
    conference experience than ever before!

    The 2014 Kennedy's Disease Conference was held in Old Town Alexandria at the Holiday Inn this November 12 to the 14th.

     

     

    • Minutes to Regan Airport and the Metro Station.
    • No need to rent a car.
    • Handicap rooms available.
    • Free High Speed Internet service.
    • Free Morning Newspaper.
    • Restaurant and room service on site.
    • Walking/scooter riding distance to shopping, art and entertainment.
    • Excellent dining options.
    • Room rates include a free Breakfast.
    • Special KDA room rates are good for three days before and after the conference.
    • Special daily rate for our conference is $129.00 for a double and $119.00 for a single.

    The KDA conference is being held at the Holiday Inn & Suites in Old Town Alexandria Virginia. There are a limited number of handicap rooms available. Please call and make early reservations to secure one of these rooms. Mention that you are coming for the Kennedy's Disease Conference for our special rates. Call (877) 504-0047 and reserve your room now.

    More information regarding the conference will be forthcoming. This is an early notice to give you a chance to secure lower rates for your flight and room reservations. Traveling alone? We'll be happy to meet you at the airport, help with luggage and transfer to the hotel. Just give us advance notice.

    There are so many things to see and do in the DC area that you may want to extend your stay.  Click here for things to do in Alexandria, VA.

    Conference Agenda:  Click Here.

    We look forward to seeing you in November! This year promises to be a great conference experience.

    Previous KDA ConferencesClick-here

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    Below are four information guides that you might find helpful

     


     

    The "Smart Exercise Guide - Part II"

    KDA-exerciseThe link below is a PDF guide that contains 35 exercises recommended by a certified Physical Therapist. This guide has specific exercises for those who are wheelchair bound and for those who are experiencing some problems walking with a cane or walker. Many of the exercises have different difficulty levels to ensure they benefit more people. Once a person gains more strength and confidence, he can move to a more difficult level.  The author has personally performed all of these exercises and found them to be very helpful in maintaining and improving his strength and balance as well as providing him with improved self-confidence.

    KD Smart Exercise Guide Part II (2009)

     

    The "Smart Exercise Guide - Part I"

    The link below is a PDF guide that contains several different types of exercises that have been approved by a neurologist. Many of the exercises have different difficulty levels to ensure they benefit more people. Once a person gains more strength and confidence, he can move to a more difficult level.  The author has personally performed all of these exercises and found them to be very helpful in maintaining and improving his strength and balance as well as providing him with improved self-confidence.

    Smart Exercise Guide - Part I (2007)

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    The Social Security - Disability Application Process

    social-securityThe application process for applying for Social Security - Disability is often daunting.  Proper planning and preparation can help a family move through this process more easily.  The following guide contains information, insights and recommendations for preparing for and submitting the Social Security - Disability application.  Click here to go to thr Social Security Disability website.

     

     SS-D Guide:  (Microsoft Word Format 272kb) -    -    -    (PDF Format 638kb)

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    Preparing for early Retirement

    financial_planningFinancial planning is important at any age, but it becomes critically important when you are diagnosed with Kennedy’s Disease because you might have to retire earlier than expected. In the guide, the author will introduce you to the process that, if completed, will help you achieve your financial goals and hopefully allow you to retire early, if the need arises.

     

    Financial Planning Guide (PDF)

     

     

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    Help Researchers Discover a Cure

    tissue_donation1Doctors, researchers, and scientists have long recognized the benefit of human tissue to further their research.  Kennedy's Disease research is no different.  In response to this need, the Kennedy's Disease Association (KDA) and the University of Michigan Brain Bank are pleased to announce the creation of a Tissue Donation Program for individuals with Kennedy's Disease who wish to donate their tissue.  This program is similar to an organ donation program, but is different because of the formalities required and the specific use for the tissue.

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    ALS Manuals

    ALS

    Although not as agressive as ALS, SBMA has many similarities.  The ALS Association has compiled six information manuals that you may find helpful.  Here are a few that may be more closely related to Kennedy's Disease:

     
     
     
     
     
     
     
     
     
     
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    More Articles ...

    1. Kennedy's Disease Brochures