Kennedy's Disease Association

A Public Benefit, Non-Profit Organization

"The web site acted as a central organizing influence for the sharing of information and brotherhood. Without the KDA, I was alone, as this disease is very rare and even my neurologist was less than fully knowledgeable."

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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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[Note:  KDA News archives (2012 and earlier) are at the bottom of this page
     

Check back regularly for updates on KDA News
and Events, and other relevant information
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Follow this link for Kennedy's Disease RESEARCH UPDATES


November, 2013 - Your generous donations allowed the KDA to award $100,000 in research grants at the annual conference - Read More

May 28, 2013 - Clenbuterol shows mixed results in pilot trial

April 28, 2013 - Published the Spring KDA Newsletter.

April 28, 2013 - Added Face, Swallowing and Lung Exercises   (Recommended by a physical therapist)

April 21, 2013 - The United States Library of Medicine has published the “Genetic Home Reference - Your Guide to Understanding Genetic Conditions.”

This website is very user-friendly, yet a comprehensive guide to most genetic disorders including Kennedy’s Disease (SBMA). The explanations are well written and for the layperson. The blog article shows a series of screenshots of the main pages of the guide. Check it out.  Link to Living with KD Blog Post --------- Link to Reference Alliance

April 14, 2013 - The Queen Anne's Race was a success raising over $13,000.-

April 05, 2013 - KDA Annual Report is available (PDF)

March 04, 2013 - Research on slowing Kennedy's Disease progression  Dr. La Spada leads a research team that has come up with a potential treatment for slowing the progression of KD

February 21, 2013 - KDA Research Grants are available for the fall of this  year. Dates, information and requirements can be found by following the above link.

February 20, 2013 - Possible Sequestration

On March 1, the automatic budgets cuts for government agencies known as sequestration will take effect if Congress has not resolved the current budget impasse.  This could have a very harmful effect on medical research programs at NIH and the review of potential new therapies at FDA.  Please visit NORD's online Advocacy Action Center now to submit a letter to your elected officials or to personalize the letter with your own information.

January 12, 2013 - Support the 1st Annual Queen Anne's Race to end Kennedy's Disease on April 7th

 

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KDA News Archives:

[Note:  KDA News archives (2011 and earlier) are at the bottom of this page]

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Check back regularly for updates on KDA News
and Events, and other relevant information

--
Also check out:
news* Research Updates under "Promote Research"
--or by following this link: Research Updates
* And, don't forget about the KDA Store

 



  • December 16, 2012 - A Holiday Message of Hope

As you know, we are so appreciative of all the work our researchers do to try to find a treatment for Kennedy's Disease. These dedicated individuals continue to provide hope that someday there will be a treatment.

Isabella Palazzolo is one of these researchers. Her message below needs to be shared with all of us living with Kennedy's Disease, as well as other motor-neuron diseases.

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Dear Bruce and Ed, and every member of the Kennedy’s Disease Association,

I want to use this email as a means to thank Bruce for his help for my green card application, and wish the best of luck to Ed in this new role. I am sure you will be excellent.

Once again, I would like to send a message of encouragement to each and all of you: as technology and resources become available for scientific research, the time is exciting and full of new discoveries and improvements. In the recent years, rare diseases like Kennedy's disease are investigated not only by academic labs but also by pharmaceutical companies, and this extend the number of scientists that you can count on your team.

I recently joined a pharmaceutical company, working on clinical trial and marketing application of new drugs for Multiple Sclerosis, ALS and, hopefully soon, other diseases of the motorneuron. I speak for my own experience: the patients associations, the interaction with patients, is where myself and most of my colleague find inspiration and motivation everyday.

Nothing like meeting the people at the Kennedy's Disease Association has driven my scientific career, and I would like to send this message of encouragement to all of you: your enthusiasm and your energy is what made me thrive for my PhD. Your interest in our small progresses, and your expectation for a drug yet to come is inspirational in each of my new challenges.

Wish you all happy holidays and merry Christmas,

Isabella

Post doctoral Fellow in Regulatory Affairs – CMC and Manufacturing Sciences
Biogen IDEC

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  • December 13, 2012 - KDA Announces new leadership for 2013

Bruce Gaughran resigns as President of the KDA.  Dr. Ed Meyertholen assumes leadership of the KDA beginning in 2013.  In the announcement, Bruce Gaughran expressed his appreciation for the help and support he received over the last seven years.

Dear Friends,

A few months ago I submitted my letter of resignation as President of the Kennedy’s Disease Association to the Board of Directors.  My last day as President will be December 31, 2012.

After seven years, I felt it was time for a change.  I have always believed in continuous improvement and constantly look for ways to improve every process.  I believe this trait became apparent when we reorganized the KDA in 2005 and again in 2010.  We have come a long way in the last twelve years because of Terry and Susanne Waite, and a team of devoted volunteers known as the Board of Directors and the Scientific Review Board.  I am sincerely thankful for their hard work, dedication and, most importantly, friendship.

Furthermore, I need to thank all of you, our 945 KDA Associates.  We could never have achieved anything near what we have if it were not for the support of all of you and especially the committee volunteers that help plan and implement our programs and conferences.

I also have good news.  Dr. Ed Meyertholen will lead the KDA beginning January 01, 2013.  Ed is the Assistant Dean and Director of Pre-Health Programs at Georgetown College, Georgetown University, Washington, DC.  His biology background, research experience, and involvement with the Scientific Review Board as well as the Board of Directors will be a tremendous benefit to this position.

In regards to my future, I will continue to serve on the KDA Board of Directors.  With the slimmed down responsibilities, I hope to add value to our organization in several areas of interest including increasing our worldwide exposure.

Again, thank you for your support.

I wish you a safe, healthy and happy holiday season and an even better 2013.


[The 2013 KDA Officers and Board of Directors]

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  • November 13, 2012 - Robert Behymer joins the KDA Board of Directors and assumes the responsibilities for fund raising.

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This is a great explanation by Doris T. Zallen, PhD, professor of science and technology in society at Virginia Tech and a long-time adviser to NORD

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    • August 11, 2012 - After swearing to never participate in another Ironman event, on August 26, 2012 Sean Blasko is again running for a cure for Kennedy's Disease.  Please support his efforts and our cause.

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    • August 02, 2012 - KDA WordCloud Cups are now available in the KDA Store

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    • July 12, 2012 - About 3:57 today the website had its one millionth visitor.  This is quite the milestone for the KDA.

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    • 4/17/12 - The 2012 KDA Conference and Educational Symposium is scheduled for early October

    The 2012 KDA Conference and Educational Symposium

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    • 4/10/12 - Andrew Cassar named Director at Large to the KDA Board of Directors

    The KDA is pleased to announce that Mr. Andrew Cassar has joined the KDA Boardof Directors.    Follow this link to read his bio:  Andrew Cassar

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      • 03/26/12 - Kennedy's Disease Research Grants are available


    The Kennedy’s Disease Association (KDA) is planning to fund one or more research grants in the fall of 2012 to further the understanding of the pathological mechanisms of Kennedy’s Disease.  The KDA projects that funding for each grant will be up to $25,000.  Applications from junior investigators and from senior post-doctoral fellows are encouraged.  Proposals must be received by Friday, June 22, 2012.  Click on the link to download the PDF explaining the program, dates and guidelines: 2012 Research Grants

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    • 3/13/12 - Jameson Parker named Director at Large to the KDA Board of Directors

    The KDA is pleased to announce that Mr. Jameson Parket has joined the KDA Boardof Directors.    Follow this link to read his bio:  Jameson Parker

     


     

    • 2/19/12 – “Back on Track:” Ronnie Upton, of the band Monkey Spanner, and Steve Jinks, U.K. KDA Associate produce album to benefit the Kennedy’s Disease Association

    Steve_Jinks-CD-smallRonnie Upton of the U.K. ska band Monkey Spanner with Steve Jinks, U.K. KDA Associate have recorded the album “Back on Track” to benefit the Kennedy’s Disease Association. All proceeds from the sale of the CD are being donated to the KDA and they have already raised over $700. The CD is available at www.stevejinks.com and is 10£ with shipping included (approximately $15) payable through Paypal. You can also listen to free MP3 samples of the songs on the album on the website.

    About Steve Jinks: Steve has been gigging since 1969, starting as a drummer and then guitarist before moving to the bass in 1980. He retired from live gigs in 2009 after being diagnosed with Kennedy’s Disease and he now concentrates his time on recording. Steve has played with a number of bands and has supported stars such as Bo Diddley, The Bachelors, H Shapiro, Freddie and the Dreamers and Brian Poole, as well as others such as Wilko Johson and Black Lace.

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    • 02/16/12 - Tricky Britches performs their uplifting and original bluegrass song "A Rare One" in honor of Rare Disease Day

    Watch Tricky Britches performing their uplifting and original bluegrass song "A Rare One", and learn about opportunities for rare disease patients to gain information, inspiration, and support through the network of Rare Disease Patient Communities, a joint initiative of NORD and Eurordis.
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    About 1 in 10 people suffer with a diagnosis of a rare disease, but since so few individuals compose each of the approximately 7000 rare disease groups, we are largely an invisible and unseen patient population.

    http://www.youtube.com/watch?v=4Qdki0DroX0&feature=youtu.be
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    • 02/01/12 - Rare Disease Day is February 29

    On the ultimate rare day---February 29th---millions of people around the world will be observing Rare Disease Day.

    And in the U.S., more than 630 patient organizations, government agencies, research centers and companies who have signed up as "Rare Disease Day Partners" will join the National Organization for Rare Disorders (NORD) in supporting the day!

    "This year marks the 5th anniversary of Rare Disease Day," said Peter L. Saltonstall, president and CEO of NORD.  "The event has grown every year and was observed in more than 60 nations last year.  The purpose is to raise awareness of rare diseases as an important public health issue."

    Plans for this year include:

    • An all-day symposium at the National Institutes of Health (NIH) for patient organizations and researchers on Feb. 29
    • The first-ever Patient Advocacy Day to be hosted by the Food and Drug Administration (FDA) on March 1
    • A blitz of patient stories, photos, videos and blogs
    • Showing support by signing up on the national website as Rare Disease Day Partners (companies and organizations) or Ambassadors (individuals)

    RDD_2012-1

    Across the U.S., patients and their families will share their stories.  Rare Disease Day Partners will host special awareness events and activities.  And, all over the world, supporters will be voicing the same themes:

    • Rare diseases affect millions of people.  (In the U.S. alone, an estimated 30 million people are affected.)
    • Getting a diagnosis is difficult and often takes many years.
    • Most rare diseases have no treatment.  (Of the 7,000 diseases considered rare in the U.S., only about 200 have approved therapies.)
    • Many rare diseass are not being studied by medical researchers.
    • More than half of the patients are children, and rare diseases tend to be serious, complex and chronic.

    "In addition to articulating the challenges, we'll be celebrating the partnership that exists between patients and those seeking to help them," Saltonstall said.  The global theme for Rare Disease Day 2012 is "Solidarity".  [Note:  The above article was taken from a NORD email addressed to the KDA]

     


     

    • 01/13/12 - New KDA Chat Room Schedule published

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    There are now five chats each month.

     

    A. The Regular 'Hosted' Public KDA Chat is held on the 1st Saturday of each month at 10:30 a.m. Eastern (USA) Time. The chat normally lasts one hour.

    The chat room is scheduled for anyone who wishes to discuss what it is like living with Kennedy's Disease or to learn more about Kennedy's Disease, Kennedy's Disease research and other topics of interest.

    B. The Wives, Caregivers, Carriers andSignificant Others KDA Chat is held on the 2nd Saturday of each month at 11:00 a.m. Eastern (USA) Time. The chat normally lasts one hour.

    The chat room is scheduled for the wives, caregivers, carriers and significant others.  This chat format allows individuals to discuss anonymously everyday issues that they face supporting someone living with Kennedy's Disease.  There will be no transcripts published.

    C. Three 'Unhosted' Public KDA Chats are held on the 3rd Saturday of each month.  The chats normally last one hour.

     

    1)  Europe:  10:00 a.m. GMT (London).
    2)  North and South America:  10:30 a.m. Eastern Time (New York).
    3)  Pacific Rim:  10:00 a.m. Central Time (Darwin, Australia)

    The chat room is open to anyone who wishes to discuss what it is like living with Kennedy's Disease.  There will be no transcripts published.

     


    • 01/08/12 - Laryngospasm; Sudden, Terrifying Difficulty Breathing

    Laryngospasms (momre commonly referred to as 'Dry Drowning') are something that many of us living with Kennedy’s Disease experience.  It can be frightening for the person having the spasm as well as anyone watching.

    “Dr. Robert Bastian of Bastian Voice Institute explains laryngospasm with video of the larynx and a simulated attack. Laryngospasm is a sudden, often severe attack of difficulty breathing, typically lasting between 30 and 90 seconds. Usually the individual makes a frightening noise while trying to breathe in during the episode, which they often call a "choking attack. You will hear the types of noises often made by the person experiencing laryngospasm, and see what the vocal folds are doing at the same time.”

    The video is less than five minutes long, but does a good job of explaining and showing what happens when we have a throat spasm.  Video Link:  http://www.youtube.com/watch?v=nPtdkqOLLP4

    The simulation spasm clearly shows what we experience as the throat closes and then begins to relax.  The sound that is made reminds me of my gasping for air when a spasm occurs.

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    KDA News Archives:

     

    NOTE:  NEEDS LINKS
    • 12/17/08 - Conference Highlights Mike Goynes has put together a nice summary of what took place at the 2008 KDA Conference. You can read about what took place at the KDA Forum.
    • 11/03/08 - Distance Challenge Fundraiser  Ed Meyertholen is on the run again to raise research funds for the KDA.
    • 8/27/08 - Use Goodsearch to raise research funds for the KDA - I am sure that most of you use the internet to search for many things each day as I do myself.  There is a new Web search engine that will pay the KDA for people to do a search using Goodsearch and it is very simple to do.  All you have to do is go to following link www.goodsearch.com and on the screen where it asks you "Who do you Goodsearch for?" type in Kennedys Disease Association and it will find the KDA as a listed charity.  Next step - Below that box select Add Goodsearch to your IE, FIrefox or MAC toolbar. this will install and add a small toolbar to your web browser and that is all there is to it.  The next time you want to search for something on the internet you can use it and at the same time raise funds for the KDA.  This is a very easy way to help the KDA and the more people we get to do this the more funds we raise.  Thank you for your consideration.
    • 8/13/08 - The 2008 Kennedy's Disease Association Conference is scheduled for November 19-21, 2008 at the  BWI Airport Marriot Hotel,  Baltimore MD.
    • 7/23/08 - Take a look at the new KDA Calendar.  On the KDA main page you will see a green button like this    It will take you there to see current and upcoming events with links on the calendar to take you to more information.
    • 5/13/08 - The KDA has a new chat room. If you use chat you will need to re-register in order to use the new room.
    • 4/11/08 - 2008 research grant applications are now being accepted.
    • 1/17/08 - The Kennedy's Disease Association is committed to promoting medical research to find a treatment and possibly a cure for Kennedy's Disease.  Thanks to the generous donations of so many this past year, the KDA’s board of directors has approved the funding of $50,000 in research grants.  Applications were accepted through September of 2007.  The Scientific Review Board with the assistance of other researchers reviewed the proposals and recommended the finalists.
    [Note:  See KDA News archives (2010 and earlier) at the bottom of this page]

     


    Check back regularly for updates on KDA News
    and Events, and other relevant information

    --
    Also check out:
    * Research Updates under "Promote Research"
    --or by following this link: Research Updates
    * And, don't forget about the KDA Store
    --


    news

    • 11/28/11 - Videos of presentations at the 2011 KDA Annual Conference

    Check out the video links to several presentations at the annaul conference:  http://www.kennedysdisease.org/promote-research/research-updates#Top

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    • 11/24/11 - Happy Thanksgiving


    Thank you so very much for supporting the Kennedy's Disease Association (KDA) during this past year.

    When you gave your support to KDA in 2011, you participated in something amazing. You helped fund three different research groups working to find a cure for this specific neuromuscular disease!

    Being a part of the KDA also helps form friendships that sustain whole families' lives for the better, forever. Your participation in any capacity is wonderful and sincerely appreciated.

    Happy Thanksgiving from our KDA family to yours,

    Lou Tudor

    Fundraising Chair



    • 10/16/11 - KDA Fall Newsletter

    The Fall KDA Newsletter is now available for downloading.  Click on this link to down the PDF file:  Fall Newsletter

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    • 10/16/11 - KDA Golf Scramble - Houston, TX

    golfPast Board Member Murray Williams and several other associates planned and sponsored a fund raiser in Houston, TX on October 1, 2011. The event raised $16,000 in donationsRead More

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    • 10/15/11 - KDA Awards $65,000 in Research Grants

     

    Thanks to the generosity of its supporters, the Board of Directors of the Kennedy’s Disease Association announced today that they awarded three research grants.  The three recipients and a brief explanation of their research are shown below.

    1.  Masahisa Katsuno, M.D. – Ph.D.,  Department of Neurology, Nagoya University Graduate School of Medicine

    Amount  Awarded:  $25,000

    Proposal:  Elucidation of neuronal death signaling pathways and development of disease-modifying therapies for Kennedy’s disease

    Brief Explanation: Their lab has evidence that the synthesis of two proteins are affected by the defective androgen receptor in KD. They wish to determine if neuronal cell death is caused by the alteration in the levels of these proteins and if cell death can be prevented by the addition of drugs that target the activity of these proteins.

     

    2.  Elise Kikis, Ph. D., Northwestern University

    Amount Awarded:  $20,000

    Proposal:  Modeling SBMA: from understanding proteotoxicity to identifying therapeutics

    Brief Explanation: They believe that the specific cell death is due to the accumulation of misfolded proteins (the androgen receptor) and the inability of cells to handle this accumulation. They propose to use a new model organism (a little worm called C. elegans – a very common and important model system in biology) to examine how different cell types handle the misfolded proteins and genetically look for other proteins that may help the cell get rid of the messed up proteins

     

    3.  Sara Parodi, Ph.D., Department of Neuroscience and Brain Technologies, Genoa, Italy

    Amount Awarded:  $20,000

    Proposal:  Identification of PKA signaling as a new therapeutic approach for SBMA

    Brief Explanation:  There is evidence that the cell death may involve changes to the androgen receptor (specifically changes in which phosphate is added to the protein, a process called phosphorylation). They hope to determine whether this cell death can be stopped due to the activation of another protein, known as PKA.

     


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    • 09/06/11 - The 2011 KDA Conference and Educational Symposium

    The conference is just around the corner!

    Dates: Wednesday, November 9 through Friday, November 11, 2011

     

    Download the PDF document to see all the details including the agenda and registration form:

    1.  For KDA Associates - PDF
    2.  For Researchers - PDF

    Location:

    Comfort Inn & Conference Center
    4500 Crain Highway
    Bowie, Maryland 20716
    301-464-0089

     

    The hotel is 25 miles from Ronald Reagan Airport, Arlington, VA and 38 miles from BWI, Baltimore, MD area.  The hotel does not offer any transportation services from the airports.  The cost of a taxi would be approximately $50 one way. The room rate is $109.79 plus tax and all 11 HC room are available.  Blocks of rooms are reserved for November 8, 9, 10.  Important:  When making reservations, mention that you are attending the KDA Conference.

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    • 08/20/11 - KDA Golf Scramble - Houston, TX

    golfPast Board Member Murray Williams and several other associates are sponsoring a fund raiser in Houston, TX on October 1, 2011.

     

    1st Annual KDA Golf Scramble

    Jersey Meadow Golf Course, Houston, Texas

    There are several ways you can support this event (participate, sponsor a hole, or make a donation).

    For additional information download this PDF flyer.

     

     


     

    • 07/28/11 - Raising Public Awareness of Rare Disorders

    A special insert in the Washington Post this week highlighted rare diseases, the need for more treatments, and the challenges of having a rare disease.  Below are two of the several good articles that appeared in the Post.

    Two of the articles are posted on the Living with Kennedy's Disease blog.  If you want to see the entire insert, contact the KDA at This email address is being protected from spambots. You need JavaScript enabled to view it. and we will email you a PDF file (2.6 mb).

     



    • 07/24/11 - Orphanet Disability Project

    The KDA received the following email from Orphanet.  It is a similar organization to the United State's NORD.  They are asking for help in further understanding the impact of Kennedy's Disease on people.  They sent a questionnaire (Word document) to be filled out.  I completed the questionnaire in about ten minutes.

    If you are interested in completing the questionnaire, please contact the KDA at This email address is being protected from spambots. You need JavaScript enabled to view it. and we will email the document to you.  After completing the questionnaire, you can email it to This email address is being protected from spambots. You need JavaScript enabled to view it. .

    Dear Sir / Madam,

    Orphanet, the European portal and worldwide reference database for rare diseases and orphan drugs, wishes to invite you and/or members of your association "Kennedy's disease association" to participate in the description of disabilities related to the Kennedy disease.

    As part of the first French national program for rare disabilities, Orphanet has been mandated by the French Solidarity Fund for Autonomy (CNSA) to document the functional consequences of rare diseases (disabilities). Your answers, and those of a medical expert and  a disability specialist, will enable us to provide an information on the disabilities encountered by the patients, which will be freely available on Orphanet website (www.orpha.net).  This data will allow health professionals, patients and their families, care and support facilities to learn about the impact of illness on their daily life.

    To this end, we have developed a questionnaire which we would kindly ask you to complete (see document attached), covering all aspects of daily patient functioning. Could you please fill this form?

    We attach particular importance to the involvement of the patient organizations in this project as you are most likely to provide us very precise information on the difficulties faced daily by the patients.

    I remain at your disposal should you require any further information.
    Thank you in advance for your contribution.

    Yours sincerely,

    Myriam de Chalendar

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    Myriam de Chalendar
    Base de données des maladies / Disease database
    
    ORPHANET - INSERM SC11
    Plateforme Maladies Rares / Rare Disease Platform
    96 rue Didot
    75014 PARIS
    FRANCE
    
    Tel: +33 1 56 53 81 51
    Fax: +33 1 56 53 81 38

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    • 06/16/11 - Add the KDA Logo to the Helmet of Hope

    NASCAR

    As you know, we are working hard to help find a cure for Kennedy's Disease. Whenever an opportunity for foundation grants comes along we examine the requirements and proceed accordingly. This opportunity available to us today was brought to me by my son, Bob Tudor. He enjoys NASCAR and is a fan of Jimmie Johnson. He also knows we could sure use a $10,000 grant!

    We need your help to qualify for this grant. You don't even need to be a racecar fan. You just need to be able to fill out the online form and provide a brief explanation of:

    (1) Why you would like Jimmie Johnson to put the Kennedy's Disease Association (KDA) logo on his helmet, and,

    (2) Why the KDA is important to you

    You can submit your nomination anytime until July 13. However, the nomination process is already in progress. Every week until July 17 two charities will be selected so the earlier we get the KDA name in the hat the better. On September 10, Jimmie Johnson will wear the Helmet of Hope. All the details are explained on the website: http://www.jimmiejohnsonfoundation.org/Events/Helmet-of-Hope.aspx

    The online form will ask for a required charity website. Here it is:

    http://www.kennedysdisease.org

    Entries are limited to one per person. For this reason we encourage you to share this letter with your family and friends to give us a better chance of winning the $10,000 grant.

    Please join hands and let's work together to find a cure!




    For several months now we knew a clinical study was coming.  This week NIH posted the following information on their website.  (If you are interested in participating in this study, the contact information is near the bottom of this page)

    Effect of Functional Exercise in Patients

    with Spinal and Bulbar Muscular Atrophy

    Number: 11-N-0171

    A.  Summary: Background:
    -Spinal and bulbar muscular atrophy (SBMA) is an inherited disorder that affects men. People with SBMA often have weakness throughout the body, including the muscles they use for swallowing, breathing, and speaking. We do not know if exercise helps or harms people with SBMA.

    B. Objective:
    -To see if a 12-week program of either strength exercise or stretching exercises will improve strength, function, or quality of life in people with SBMA

    C. Eligibility:
    -Participants will be men 18 years of age or older who have genetic confirmation of SBMA.
    -They must be able to walk at least 50 feet with or without an assistive device such as a cane or a walker and stand for 10 minutes without using an assistive device.
    -They must have access to a computer with an Internet connection.

    D. Design:
    -At the first visit to NIH (2 days), participants will have a medical history taken and undergo a physical exam. They will also have blood tests and an EKG, and complete questionnaires about mood, health, and exercise. Tests of muscle strength, balance, and endurance will also be done.
    -Participants who qualify for the study will receive instruction about either strengthening or stretching exercises. They will do these exercises at home one to three times a week for 12 weeks.
    -They will wear a small activity monitor while they exercise and record their exercise in a diary.
    -At the end of 12 weeks, participants will return to the NIH for 2 days. They will undergo the same tests as they had on the first visit.
    -Participants will receive follow-up phone calls and e-mails during the study and for 4 weeks after the last visit.

    E.  Sponsoring Institute:
    National Institute of Neurological Disorders and Stroke (NINDS)

    F.  Recruitment Detail
    Type: Participants currently recruited/enrolled
    Gender: Male

    G.  Eligibility Criteria:
    INCLUSION CRITERIA:
    1. Genetically confirmed SBMA.
    2. Ambulatory and walk a distance of at least 50 feet with or without a walker.
    3. Able to stand for 10 minutes without the use of any assistive devices.
    4. Willing to travel to the NIH at the beginning and end of the study.
    5. Willing to participate in telephone monitoring.
    6. AMAT score of less than 41, but greater than 14.
    7. Male.
    8. Willing to participate in all aspects of trial design and follow-up.
    9. Access to a computer with an internet connection
    10. Able to do all of the exercises according to the standards of the study examiners at the beginning and end of the study
    11. Willing to forgo starting an additional exercise plan for the 12 week duration of the study
    12. Age greater than 18 years
    EXCLUSION CRITERIA:
    1. Medical condition which would preclude exercise such as COPD, congestive heart failure, and cardiac arrhythmias.
    2. Presence of an additional comorbid condition such as stroke, myopathy, or radiculopathy which also results in weakness.
    3. Beginning a separate exercise program involving at least two weekly sessions of 20 minutes of exercise each within two months of the start of the trial.

    Contact(s):
    Patient Recruitment and Public Liaison Office
    Building 61
    10 Cloister Court
    Bethesda, Maryland 20892-4754
    Toll Free: 1-800-411-1222
    TTY: 301-594-9774 (local),1-866-411-1010 (toll free)
    Fax: 301-480-9793
    Electronic Mail:  This email address is being protected from spambots. You need JavaScript enabled to view it.
    Link to the article:  http://clinicalstudies.info.nih.gov/cgi/detail.cgi?A_2011-N-0171.html

    Note: On Juloy 16, 2011. Dr. Chris Grunseich from NIH was the guest for the KDA Chat Room.  You can read the transcript of this chat by following this link:  http://www.kennedysdisease.org/provide-support/2011-chat-room-transcripts/472-2011-july-16-nih-clinical-trial-on-exercise

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    • 05/05/11 - Susanne Waite is in second place in the Energizer "Hall of Fame" contest.  There are only eight days left to vote.  Please consider voting every day and let's help push her to victory.

    Click on this link to cast your vote now:   www.energizerkeepgoinghalloffame.com/Finalists.aspx?finalists=SusanneWaite




    • 04/21/11 - Susanne Waite on TV bringing awareness to the public about Kennedy's Disease

    Follow this link to see the interview of Susanne (http://www.cbs47.tv/news/local/story/Coarsegold-Woman-Needs-Your-Vote/l-W5_BW9i0C-JqJSdDxr9g.cspx)

    Susanne still needs your vote! The KDA is asking you to vote every day between now through May 13.  $5,000 will help fund more research projects this year.  See the article below (04/05/11) and click on the the link shown to vote today.  We thank you for your support.

     

     


     

    • 04/10/11 - KDA Xpress - Spring Newsletter is available for download

    Click on the following link to download the newsletter in a PDF format:  Spring Newsletter

     

     


     

    • 04/08/11 - Cleveland, OH Family fights Kennedy's Disease

    A Cleveland family discusses living with Kennedy's Disease.

    Video:  http://news.yahoo.com/video/health-15749655/a-local-family-helps-spread-the-word-about-kennedy-s-disease-24828690

    Article:  http://www.msnbc.msn.com/id/42475866/ns/local_news-cleveland_oh/

     


     

    • 04/05/11 - Susanne Waite, KDA President Emerita and co-founder, has made it into the Top 10 and is a National Finalists for the Energizer "Keep Going" Hall of Fame Contest!

    Thank you for your votes. The Kennedy's Disease Association will be receiving a $1,000.00 check for Susanne making it into the Top 10 Finalists!

     

    Energizer

    Now the real work begins!

    We need your help to bring home the big prize.

    Please take 30 seconds to vote today and every day through May 13th.  (A Facebook account is NOT needed)   Click on this link to cast your vote now: www.energizerkeepgoinghalloffame.com/Finalists.aspx?finalists=SusanneWaite

    You can only vote once per day, but you can vote every day through May 13th. You might even consider making the link a shortcut so you can vote that much easier every day!   The Energizer website will ask for your name and an email address.  Energizer states this is not being collected for any marketing purpose, but is their way to verify that only one vote per day per person is being registered.

    If Susanne wins the Grand Prize - an additional $5,000.00 will be donated to the KDA by Energizer, Inc.   The remainder of the $15,000 prize, Susanne promises to divide up amongst these non-profits: KDA, American Cancer Society, Alzheimers Association, Veteran's Association, SPCA, Central Valley Food Bank - 24% of those living in the Fresno area go without a meal each day, Manna House, Poverello House, Terry's House, Boys & Girls Club, and 4-H/FFA

    Remember to vote every day.  Also, please forward this email on to your friends, family, coworkers and contacts and encourage them to vote each day now through May 13th. Thank you for your continued support.

    Here is a link to a short video with Terry and Susanne explaining what it is like living with Kennedy's Disease.



    • 04/01/11 - 2011 Research Grants are now available

    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 $25,000, but a $50,000 grant may also be available if recommended by the Scientific Review Board.  Applications from junior investigators and from senior post-doctoral fellows are encouraged.  Proposals must be received by Friday, June 17, 2011Click here to download the Microsoft Word 'Research Grant letter and guidelines'.

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    • 03/31/11 - Let congress know that we do not want to see NIH have their budget cut

     

     

    Sign Online Petition to Tell Congress You Oppose NIH Funding Cuts


    An Ad Hoc Group for Medical Research has circulated a link to an online petition opposing threatened budget cuts to the National Institutes of Health (NIH). As Congress moves to finalize FY 2011 appropriations, patient advocates and others are making their voices heard about the importance of maintaining strong medical research programs. The petition will be kept open until the FY 2011 spending bill is finalized. Sign the petition.

     


     

    • 03/28/11 - Great News!  Susanne Waite made the Final Top Ten in the Energizer "Keep Going" Hall of Fame

     

    Thanks to everyone's help that voted this last week, Susanne is a finalist.  She will immediately received a $1,000 donation to the KDA for making the Top Ten.  Should she win, the KDA will receive another $5,000 and Susanne will also recieve another $10,000 that will be donated to several other charities that are near and dear to her heart.  More information will become available within a week.

     


     

    by Margaret Carrero

    A Valley woman may soon be inducted into a very special Hall of Fame.  Susanne Waite of Coarsegold was only 27 when she learned that her 35-year-old husband had Kennedy's Disease, a rare and degenerative neural-muscular disease that leads to muscle weakness and atrophy.

    "It was tough," recalls Waite of the three years it took doctors to finally produce a diagnosis and even then she says, "...no one knew how long he'd live, how fast it would progress, if we had children what would happen, we couldn't get those answers."

    So in August 2000, the Waite's took matters into their own hands by launching the non-profit "Kennedy's Disease Association" where they've been able to connect with others who are suffering from the disease, while raising money to fund research grants.

    Waite says there may also be a promising new drug going into clinical trials over the next year, which would be a positive step toward battling a disease with no known cure.  Over the years, Kennedy's Disease has taken a toll on her husband who now has to use a wheelchair because it's grown increasingly more difficult for him to walk long distances.  "He's getting weaker but he has good spirits, and he's trying to do the best he can with what he has available as far as strength goes," adds Waite.

    Earlier this year, Waite's mother nominated her for induction into Energizer's 2011 "Keep Going Hall of Fame" which recognizes everyday people for their extraordinary acts.  Waite has since been tapped as one of 100 semifinalists and jokingly alluded to being a "shoe in" because her nickname growing up was "energizer bunny".  Judges are expected to narrow down the pool to 9 Finalists by Thursday, March 17th, at which point Energizer Bunny Facebook fans will get the opportunity to vote for the 10th Finalist, all of whom will receive a $1,000 donation to the charity of their choice.  The 2011 Inductee will then be chosen by a public vote on Energizer's website beginning April 4th, with the winner being awarded a $10,000 cash prize plus another $5,000 donation to his/her favorite charity.  The winner will be formally inducted into the Hall of Fame by 2006 inaugural inductee, Cal Ripken, Jr., in June.

     


     

    • 03/11/11 - Short video message on YouTube

      A daughter whose father has Kennedy's Disease has posted a short video on Kennedy's Disease and the need for a cure



    • 03/11/11 -The following fund raising events will take place this year.

    1.  On April 2 thru 4, 2011 - Sean Blasko will hold a plant and tree sale to benefit Kennedy's Disease research during the community-wide yard sale in Austin, TX.

    2.  On May 15, 2011 - Carla and Stan Highe and family will sell 'KDA muscle shirts' at the Gilmore Car Museum "Dust Off" car show and swap meet. in Kalamazoo, MI.

    3.  May, 2011 - Beth DuVall is at it again this year.  Last year, Beth raised $4,000 in donations for her "Running for a Cure" for the KDA.  She is hoping to top that amount this year and is asking for everyone's help to get the word out.  Please support Beth in her run that will take place in May.  You can make a donation directly to the KDA, PO Box 1105, Coarsegold, CA  93614 or via the Razoo Website which will add your donation to Beth's page which shows if she is on track to meet her goal or not.  http://www.razoo.com/story/Running-For-A-Cure-Part-Deux?1299045182

    4.  On October 1, 2011 - Murray Williams, Ed Noack, Mike and Verna Noack and Charlie and Louise Goforth. will hold a  Golf Tournament to benefit Kennedy's Disease Research at the Jersey Meadow Club, Houston, TX.

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    • 03/09/11 - The 2011 KDA Conference and Educational Symposium
      Dates:  November 9, 10, and 11
    Sheraton Baltimore-Washington Airport Hotel - BWI
    1100 Old Elkridge Landing Road
    Linthicum Heights, MD 21090

    On Tuesday evening, November 8, there will be an informal (Dutch Treat) dinner for those arriving early.  Further details will be made available in the early summer.


     

    • 03/06/11 - Added additional Online Resources

      The internet has an abundance of information available for those living with a disability.  We added a page of online resources to help research opportunities available, benefits, and answer questions.


       

    • 02/23/11 - KDA 2010 Annual Report published

      The KDA had another busy year.  Read all about it by following the link.


       

    • 02/05/11 - Dr. J. Paul Taylor Awarded MDA Research Grant

      Dr. Taylor recently published study results identifying the specific mechanism by which mutations in the androgen receptor protein gene lead to toxicity and neurodegeneration in SBMA.

      Taylor-GrantJ. Paul Taylor, associate member of St. Jude Children’s Research Hospital in Memphis, Tenn., has received an MDA research grant totaling $330,000 over three years. The funds will help support Taylor’s continued research into a number of possible therapeutic targets in spinal-bulbar muscular atrophy (SBMA).  In prior research funded by MDA, Taylor and colleagues developed a fruit fly model of SBMA and used it to determine how mutations in the androgen receptor (AR) gene lead to the death of motor neurons (nerve cells) and deterioration of muscle in this disease.


      Specifically, the study team determined that toxicity occurs only when mutant AR enters the cell nucleus and binds to DNA. The team determined that toxicity is mediated by a small interaction surface on AR called "AF2." The team also has determined that toxicity is strongly enhanced by a chemical modification called "sumoylation."

      Now, Taylor intends to continue along the same line of study, testing the validity of two therapeutic targets, AF2 and sumoylation, identified in his previous work.  The team will engineer new mouse models of SBMA, some carrying normal forms of AR and others carrying mutant forms of the protein that are defective in DNA binding, incapable of undergoing sumoylation, or have a disrupted or nonfunctional AF2 surface. In parallel, the team will work to identify small molecule inhibitors of these targets in their fruit fly model.  Findings derived from Taylor’s studies could lead to the identification of compounds that can be developed for human clinical testing.


       

    • 02/02/11 - Kennedy's Disease Association Launches New Website

      We have been working on it for months and it has been a labor of love.  Now that it has officially been launched, we will continue to look for ways to improve it.  The Board of Directors thanks Linda Stephens-Dyer of Zebra Graphic Designs for designing the website and leading the project.  We also wish to thank the website "testers" for their help.  A special thanks goes to Stan Highe for his thoroughness in the testing process and to Mike Goynes for his tenacity and diligence while working through the changeover to a new ISP.


       

    • 02/01/11 - Rare Disease Day is February 28, 2011

      Rare Disease Day is an international advocacy day to bring widespread recognition of rare diseases as a global health challenge. The day is celebrated on the last day of February every year.  Anyone can be involved in Rare Disease Day and there are many suggested activities. The day has been established as a grassroots advocacy day and we encourage everyone to participate in some way.  This website focuses on Rare Disease Day activities in the U.S. To learn what’s happening around the world, go to the global Rare Disease Day website at rarediseaseday.org. What is a Rare Disease? In the U.S., a rare disease is one that affects fewer than 200,000 people. This definition comes from the Orphan Drug Act of 1983 and is slightly different from the definition used in Europe. There are nearly 7,000 rare diseases affecting nearly 30 million Americans. In other words,rare-desease-day as many as one in ten Americans are suffering from a rare disease.  Besides dealing with their specific medical problems, people with rare diseases struggle to get a proper diagnosis, find information, and get treatment. The rarity of their conditions makes medical research more difficult. For 2011, our focus is on disparities in access to services and treatment.  [Note:  The KDA is an active member of NORD and supports Rare Disease Day]


       


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    KDA News Archives:

    • 12/11/09 - Mighty mice: Treatment targeted to muscle improves motor neuron disease
    • 12/9/09 - The MDA  has issued a letter stating that due to the current economy, that as of January 1st 2010 they will be stopping assistance in the purchase of durable medical equipment, also transportation to MDA clinics.  Please click here to read the letter. (requires Adobe reader)  The letter may take a couple of minutes to load if you are on dial-up so please be patient.
    • 12/01/09 - KDA Winter Newsletter - The KDA Winterl 2009 newsletter is now available for download. You will need the adobe viewer.
    • 10/28/09 - Therapy Investigated for ALS May Find New Role in Kennedy's ...
    • 10/19/09 - IGF1 might work better and more specifically in Kennedy's disease than in ALS says ... Kennedy's disease also called spinal and bulbar muscular atrophySBMA
    • 10/19/09 - Research Update - Rescuing SBMA-Affected Muscles - Maria Pennuto
    • 9/16/09 - Ed Meyertholen is at it again, He is running to raise funds for the KDA. He is  running the San Antonio Rock and Roll Marathon.
    • 9/10/09 - Living with Kennedy's Disease Blog - Bruce Gaughran has created a blog focused on Kennedy's Disease.  Many posts (some serious and others humorous) are personal experiences, stories and thoughts about living with Kennedy's Disease.  Interspersed throughout the posts are articles on Kennedy's Disease including tips on applying for Social Security-Disability, recent research, profiles of young researchers, exercise programs, tips on using mobility devices, etc.  If you have a chance, take a look and see if anything sparks an interest.
    • 9/03/09 - KDA Fall Newsletter is now available.
    • 09/01/09 - We have added a new vendor to our on-line shopping page, Avon Products. A portion of the sales will go towards research
    • 8/10/09 - WE NEED YOUR HELP,  We need to update our e-mail database here at the KDA.  please send an e-mail to This email address is being protected from spambots. You need JavaScript enabled to view it. and let us know your current e-mail and name so we can check it against our current list.  Thank you
    • 6/1/09 - Sean Blasko has been training for the 2009 Ironman competition.  He is doing this to raise research funds for the KDA.
    • 5/8/09 - 2009 Research Grant applications are now being accepted.
    • 5/04/09 - The KDA XPress Spring/Summer 2009 Newsletter is now available.
    • 4/21/09 - The KDA welcomes our newest KDA Board of Directors member Lou Tudor.  Please see this link for a short bio for Lou.
    • 02/07/09 - The KDA has added a new easy way of making donations to the KDA using Razoo - Make a credit card donation by using the SECURE SERVER "Donate Now" button on the right. Razoo is a service that processes and routes credit card payments to non-profits. Razoo is not charging any processing fees for donations
    • 01/20/09 - Laryngospasm - The link will take you to a website that will explain the choking (dry drowing) spells that most of us with KD eperience on a regular basis. It is called Laryngospasm. There is even a short video of what is occuring.(http://www.voicedoctor.net/therapy/laryngospasm.html)
    • 1/9/09 - Smart Exercise Guide - Part II - The below exercises were recommended by a certified Physical Therapist.  Several of these exercises are designed for someone that is having difficulty walking; or feels more comfortable in a wheelchair, but can still stand and transfer without assistance.  Most exercises can be modified by adding light weights and by holding a position for a longer period of time.  I have personally performed all of these exercises and found them to be very helpful in maintaining and improving my strength and my balance as well as providing me with improved self-confidence. KD Smart Exercise Guide Part II (2009)
    • 1/7/09 - Researchers Explore Self-Defense in Nerve Cells for SBMA

    More Articles ...

    1. 2010 KDA News