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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Welcome

Are you looking for answers?

First time visitors might find the following information helpful 

 

Navigating the KDA website

  • On the left of each web page is the MAIN MENU. By clicking on each menu category, you will see several SUB-MENUS.
  • Frequently Used Links: Near the bottom in the left column of each page are several 'links' to quickly navigate to popular pages on this site.
  • The KDA logo on the left of each page is a quick way to navigate to the HOME page.  Just click on it.
  • Looking for a specific topic? Use the Advanced SEARCH module on the top right of each page.
  • The Site Map on the MAIN MENU shows every page in the entire website.
  • There is a KDA chat room that is used monthly to connect with others. To learn more, visit the KDA chat room page.

Could I have Kennedy's Disease, or is it ALS, or maybe something else? Click here to learn more about Kennedy's Disease.

What are researchers doing to find a treatment of cure for Kennedy's Disease? 

There are many who are willing to help. Always remember, you are not alone.

Do you want to learn more about the Kennedy's Disease Association?

What if I have more questions? How do I contact the KDA?

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Welcome to the Family

Working together to find a cure

Thank you for visiting the Kennedy's Disease Association (KDA) website. We are a non-profit corporation staffed by volunteers, all of whom are Kennedy's Disease patients, carriers, spouses, caregivers, and family members or friends. The KDA's mission is to:

  • Financially support Kennedy's Disease research and education
  • Share information about Kennedy's Disease with those who seek it
  • Create a support system for those living with Kennedy's Disease
  • Increase public awareness of Kennedy's Disease and its effect upon families
  • Improve the awareness of Kennedy's Disease in the medical community

Comprehensive Website: The KDA has developed a web site to help share information in a cost-efficient and effective way. The website's link is: www.kennedysdisease.org. We are constantly updating relevant information as it becomes available. Please visit the First Time Visitor page to become familiar with some of the information that is on the website. There is also a "Living with Kennedy's Disease" blog where several hundred articles of possible interest are posted. Shown below are links to other information and services including: "Frequently Asked Questions" concerning Kennedy's Disease and KDA newsletters.

KDA Chat Room: We host a Chat Room on the first Saturday of each month at 10:30 AM Eastern Time. Several times a year doctors, researchers and specialists are invited to the chat room to discuss the latest research, health issues, and quality of life topics. Chat room topics and guests are posted at: Chat Room Schedule. Transcripts of previous chats can be found at: Recent Chat Transcripts.

KDA Forum: The KDA has an open forum for those interested in posting questions, providing answers, or sharing stories and information. You can find out more about the forum at: KDA Forum.

Contact the KDA: You can call, email or write the KDA by following this link: Contact the KDA 

Network with others living with Kennedy's Disease: We also offer a networking service for all KDA Associates. 

Email Updates Occasionally, the KDA will send out emails that contain research and clinical trial updates, Association news, notifications of pending chat room discussions, and annual conference information. If, at any time, you do not want to receive further emails from the KDA, just click on the 'Safe Unsubscribe' link at the bottom of the email. Your name will be immediately removed from our distribution list.

About the KDA: The Kennedy's Disease Association is a non-profit corporation, incorporated in California on August 21, 2000. We are recognized under United States Internal Revenue Code 501(c)3 as a publicly supported organization as described in sections 509 (a) (1) and 170 (b) (1) (A) (vi). Donations are considered tax deductible by the I.R.S. in the United States. Click here to see how your donations are used

Note: You will need to Register to access the KDA Chat Room:  Fill in the Registration form using your email address, personal user name and password. The system will send you a confirmation email that looks like this:

"Thank you for registering at the Kennedy's DIsease Association Your account is created and must be activated before you can use it. To activate the account click on the following link or copy-paste it in your browser:"

Click on the link in the email to authenticate you are not a SPAMMER. Once you have activated the account, you can log In using the LOGIN form You now have access to the Chat Room on the website.

Note: If you don't receive an email from the KDA withing a matter of minutes, please check your SPAM or Blocked emails folder. It might be in there. There are also a few service providers that view the authentication link as SPAM and don't even send it to you. If you don't receive the email, Contact the KDA and ask to be authenticated.

We want to hear from you: Welcome to the KDA Family. If we can ever be of service, please do not hesitate to Contact Us.

Sincerely,

The Kennedy's Disease Association

 

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Current Scientific Review Board Members

 

fischbeck_1 Dr. Kenneth Fischbeck

National Institute of Neurological Diseases and Stroke
A leading researcher, professor and educator on the subject of Kennedy's Disease; a co-discoverer of the Spinal Bulbar Muscular Atrophy gene.

diane_merry

Dr. Diane Merry

Thomas Jefferson University

Dedicates research team to Spinal Bulbar Muscular Atrophy

 


LaSpada

Dr. Al La Spada

University of California, San Diego

Co-discovered the Spinal Bulbar Muscular Atrophy gene and continues to research Kennedy's Disease




Lieberman_Andrew

Dr. Andrew P. Lieberman

University of Michigan

Researcher in the area of inherited neurodegenerative diseases.  Director of the Neuropathology Core for the Michigan Alzheimer's Disease Research Center

 


Taylor_paul--1

Dr. J. Paul Taylor

St. Jude Children's Research Hospital, Memphis, TN

Research focus is on reducing the morbidity and mortality associated with neurological disease

 


Jordan

Dr. Cindy Jordan
Michigan State University

Dr. Jordan has had a strong research interest in the effect of sex hormones on the brain and behavior. This research led her to discover that Kennedy's Disease affects the muscles dirrectly so that treatments targeting the muscles alone can be successful


Meyertholen

This email address is being protected from spambots. You need JavaScript enabled to view it. - Patient Liaison 

Assistant Dean and Director of Pre-Health Programs at Georgetown College, Georgetown University, Washington, DC. - Ed is a person living with Kennedy's Disease
 
 
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Join the Kennedy's Disease Association

Receive research updates and the latest KDA news


Information sent from the KDA includes medical and clinical research updates, newsletters, conference information and other topics that might be of interest. After joining, you will receive a Welcome email that will include links of interest, and other information about the KDA.

Note: The information you provide is considered private by the KDA and will not be shared without your prior consent

At any time you can UNSUBSCRIBE by just clicking on the link at the bottom of each email.

 

Join Today

Please review our Privacy Statement before joining.

You may also use your mobile device to scan the QR Code below to register 

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Kennedy's Disease Association, Inc.
P.O. Box 1105
Coarsegold, CA 93614-1105 (U.S.A.)

 

Doctors Familiar with Kennedy's Disease

 

The following doctors' names were given to us by individuals who have Kennedy's Disease (KD) that utilize their services. We have been told that these doctors have a familiarity with KD.

While the Kennedy's Disease Association cannot recommend any one physician, we make these names available by geographic location and give you the opportunity to decide if you would like to make contact with them. This list is not all encompassing. There are many doctors who are not on this list that treat KD and have knowledge of KD.

Important:  If you have a doctor that you wish to recommend, please send the information to This email address is being protected from spambots. You need JavaScript enabled to view it..

UNITED STATES

ARIZONA | CALIFORNIA | DELAWARE | FLORIDA | GEORGIA | ILLINOIS | INDIANA | IOWA | MARYLAND | MASSACHUSETTS |
MICHIGAN
 | MISSOURI | MINNESOTA | NORTH CAROLINA | OHIO | PENNSYLVANIA | TENNESSEE
| TEXAS | UTAH | WASHINGTONWISCONSIN |

OTHER COUNTRIES

UNITED KINGDOM | PHILIPPINES | SOUTH KOREA | SWEDEN | AUSTRALIA

 


ARIZONA

Dr Steven R. Hempelman
13640 N. Plaza Del Rio Blvd
Peoria, AZ 85381

(623) 876-3830

Dr. Shafeeg Lahda
500 W Thomas Rd
Phoenix, AZ 85013 
(602) 406-6262

K. Sivakumar, M.D.
222 W Thomas Rd
Phoenix, AZ 85013
(480) 314-1007

David S. Saperstein, M.D.
5090 N 40th St, Ste 250
Phoenix, AZ 85018
(602) 258-3354

Dr. Jiong Shi, M.D.
350 W Thomas Rd
Phoenix, AZ 85013
(602) 406-3000

Timothy M Miller, M.D.
1501 N. Campbell Ave
Tucson, AZ 85724
(520) 626-4147

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CALIFORNIA

Jonathan S. Katz, M.D.
2324 Sacramento St, Ste 111
San Francisco, CA 94115
(415) 600-3604-

Albert La Spada, M.D., PhD, FACMG
2880 Torrey Pines Scenic Dr, Ste 0642
La Jolla, CA 92093
(858) 246-0148

Tahseen Mozaffar, MD
200 S. Manchester Ave, Ste 110
Orange, CA 92868
(714) 456-2332
 

John W. Day, MD, PhD
Neelam Goyal, MD
Jacinda Sampson, Neurogenticist
Yuen So, MD, PhD
Stanford Neuroscience Health Center
Department of Neurology & Neurological Sciences
213 Quarry Road
Palo Alto, CA 94304
650-497-5934

 

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 DELAWARE

Enrica Arnaudo, M.D.
774 Christiana Road, Ste 106
Newark, DE 19713
(302) 731-4663

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FLORIDA

Daniel P. Stein, M.D.
5602 Marquesas Cir, Ste 108
Sarasota, FL  34239
(941) 315-6470

Mayo Clinic - Nuerology Dept
4500 San Pablo Road
Jacksonville, FL  32224
(904) 953-0853

Laura W. Katzin, M.D.
2A Columbia Dr
Tampa, FL  33606
(813) 259-0821

Dr. Jose Pizarro-Otero, M.D.
10141 Big Bend Rd Ste 206
Riverview, FL 33578
(813) 397-1274

 

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GEORGIA

Linton Hopkins, M.D.
1365 Clifton Rd NE
Atlanta, GA 30322
(404) 778-3444

John Sladky, M.D.
2015 Uppergate Dr
Atlanta, GA 30322
(404) 727-5756

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ILLINOIS

Robert Sufit, M.D. 
675 N. St. Clair, Ste 20
Chicago, IL  60611
(312) 695-7950

Teepu Siddique, M.D. 
675 N. St.Clair, Ste 20
Chicago, IL  60611
(312) 695-5886

Richard H. Lee, M.D.
5401 N Knoxville Ave, Ste 218
Peoria, IL  61614
(309) 692-1016

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INDIANA

David A. Josephson, M.D.
8402 Harcourt Rd, Ste 615
Indianapolis, IN 46260
(317) 806-6991

Kristi K. George, M.D.
1400 N Ritter Ave, Ste 615
Indianapolis, IN 46219
(317) 715-5600

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IOWA

Jonathan Moravek, M.D.
201 Ridge St
Council Bluffs, IA 51503
(712) 396-4050

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MARYLAND

Neil C. Porter, M.D.
16 S Eutaw St
Baltimore, MD 21201
(410) 328-5660

David R. Cornblath, M.D.
610 N Caroline St
Baltimore, MD 21287
(410) 955-2229

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MASSACHUSETTS

Kenneth Gorson M.D./SEM/CCHCS
736 Cambridge St
Boston MA 02135
(617) 789-2375

Anthony Amato, M.D. 
75 Francis Street, Boston, MA 02115
(617) 732-8046

Dider Cross, M.D.     
1 Hawthorne Place, Ste 105
Boston, MA  02114
(617) 720-0030

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MICHIGAN

Daniel S. Newman, M.D.
2799 West Grand Blvd.
Detroit, MI 48202
(313) 916-2594

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    MISSOURI

    Raghav Govindarajan, M.D.
    660 S Euclid Ave, Ste 8111
    St Louis,, MO 65201
    (341) 362-7241

    Alan Pestronk, M.D.
    517 Euclid Ave
    St. Louis, MO 63110
    (314) 362-6981

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    MINNESOTA

    David Walk, M.D.
    420 Delaware St SE
    Minneapolis, MN 55455
    (612) 625-1969

    William David, M.D.
    825 So. 8th St, Ste 250
    Minneapolis, MN 55404
    (612) 347-6450

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    NORTH CAROLINA 

    Nizar Chahin, M.D.
    101 Manning Drive
    Chapel Hill, NC 27514
    919-966-4401

    Elena Brawer, M.D.
    1010 Edgehill Rd N
    Charlotte, NC 28207
    (704) 446-1900

    Donald Saunders, M.D. 
    1255 Hospital South   
    Durham, NC 27710
    (919) 684-6078

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    OHIO

    Douglas B. Karel, M.D.
    101 Timberfield Dr N
    Lima, Ohio 45801
    (419) 225-5100

    John Quinlan, M.D.
    222 Piedmont Ave, Ste 3200
    Cincinnati, OH 45219
    (513) 475-8730

    Hani Kushlaf, M.D.
    222 Piedmont Ave, Ste 3200
    Cincinnati, Ohio 45219
    (513) 475-8730

    Laura Sams, M.D.
    222 Piedmont Ave, Ste 3200
    Cincinnati, Ohio 45219
    (513) 475-8730

    Jerry R. Mendell, M.D.
    700 Childrens Dr
    Columbus, OH 43210
    (614) 722-2715

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    PENNSYLVANIA

    Goran Rakocevic, M.D.
    900 Walnut St, Ste 200
    Philadelphia, PA  19107
    (215) 955-4087 

    Terry Heiman-Patterson, M.D.
    219 N. Broad St
    Philadelphia, PA  19107
    (215) 762-6915

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    TENNESSEE

    J. Paul Taylor, M.D.
    262 Danny Thomas Pl
    Memphis, TN 38105
    (901)-595-6047

    Joshua P. Alpers, M.D.
    979 E 3rd St, Ste C-830
    Chattanooga, TN 37403
    (423) 778-9001

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    TEXAS

    Dennis Mosier, M.D.
    1 Baylor Plaza
    Houston, TX 77030
    (713) 798-6151

    Milvia Y. Pleitez, M.D.
    6560 Fannin St, Ste 2100
    Houston, TX 77030
    (713) 441-3780

    Erica Simpson, M.D.
    6560 Fannin St
    Houston, TX 77030
    (713) 441-3336

    Daragh Heitzman, M.D.
    6302 Gaston Ave
    Dallas, TX  75214
    (214) 827-3610 

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    UTAH

    Dr. David Renner, M.D.
    175 S Medical
    Salt Lake City, Utah 84108
    (801) 585-5405

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    WASHINGTON

    Peter J. Struck, M.D.
    1400 E. Kincaid Street
    Mount Vernon, WA 98274
    (360) 428-2500
    -

    University of Washington
    Medical Genetics Clinics
    1705 NE Pacific St
    Seattle, WA 98195
    (206) 598-4030 

    Robin L. Bennett, MS, CGC
    1959 NE Pacific St
    Seattle, WA 98195
    (206) 598-4030

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    WISCONSIN

    Wendy Larson Peltier, M.D.
    9200 W Wisconsin Ave,
    Milwaukee, WI 53226
    (414) 805-3666

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    United Kingdom

    Adrian J. Wills, M.D.
    Queen's Medical Centre, University Hospital NHS Trust,
    Nottingham, NG7 2UH
    0115 924 9924

    Angela F Brady, M.D.
    North West London Hospitals NHS Trust,Watford Road,
    Harrow, HA1 3UJ
    020 8869 2795

    Dr. Pietro Fratta, M.D.
    Queen Square London WC1N 3BG
    020 3448 3111

    Kevin Talbot, M.D.
    Headington Oxford OX3 9DU
    01865 234829

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    Philippines

    Raymond L. Rosales, M.D.
    University of Santo Tomas Hospital
    Sampaloc , Manila, Metro Manila
    (632) 7313001

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    South Korea

    Department of Neurology
    Seoul National University Hospital
    28 Yongon-Dong, Chongno-Gu, Seoul 110-744, Korea
    82-2-2072-2237

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    Sweden

    Lars-Olov Ronnevi, M.D.
    Head of Neurology,  Karolinska University Hospital
    Stockholm, Sweden
    468-51775571

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    Australia

    Garth Nicholson, M.D.
    Concord Hospital, University of Sidney
    Sidney, Australia
    61 2 9767 6796

     


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