WHATS NEW ON THE KDA SITE 12/03/05 Running for Kennedy's Disease - Update The KDA thanks Andrea Meyertholen (whose father has KD) and members of Dr. Diane Merry's lab from Thomas Jefferson University who ran the Philadelphia Marathon and raised a grand total of $2,912.40. Way to go! Thanks to those to took part in the Marathon by running or donating to help support KD research. New Chat Transcripts Posted The past 3 chat transcripts has been added to the web site. Click Here to go to the transcripts page 11/02/05 Running for Kennedy's Disease On November 20, 2005, Andrea Meyertholen (whose father has KD) and members of Dr. Diane Merry's lab from Thomas Jefferson University (one one of the few labs dedicated to KD research) will be running in the Phialdelphia Marathon. While Andrea will be running the entire 26.2 miles, Maria Angiolillo, Jen McBride, Ed Meyertholen (who has KD) and Heather Montie (whose father has KD) will be running the 26.2 miles as a relay team. They will be running to help support the work of the KDA. To find out more about this special event or to donate towards the cause click here. You can make the difference. The KDA Becomes a Member of NORD The KDA over the past few month's went through the process of applying to become a memberr of NORD (National Organization for Rare Diseases). We are very pleased to announce that the NORD board has voted and accepted the KDA as a member. NORD is a unique federation of organizations that share a common interest in helping people with rare diseases. These organizations have learned that they speak with a louder voice when they work together, even though their individual missions may differ in specific details. NORD member organizations share the benefit of representation in Washington, DC, through the efforts of NORD's Vice President for Public Policy in its Washington office. They also receive frequent briefings from NORD on political and medical news, as well as guidance on topics related to accomplishing their organizational goals. To read more of the benefits of the KDA becoming a member of NORD Click Here New Chat Transcripts Posted The past 2 chat transcripts has been added to the web site. Click Here to go to the transcripts page
10/08/05 New KDA Brochure Posted - Click Here to go to the page with the brochure Coakley's Corner Article Posted - Lamentations, Insights, and Suggestions New Research Articles Posted Chemical compound found to treat neurodegenerative diseases. Possibly SBMA. Click Here Kennedy's disease phenotype with positive genetic study for Kugelberg-Welander's disease: case report
08/23/05 2005-2006 New KDA Board Member Position Changes The Kennedy's Disease Association Board of Directors announce the following changes effective August 20, 2005. Please Click Here to see the new positions.  Susanne Waite has stepped down from the positions of Executive Director and President. Because of her long-standing involvement and dedication to the KDA, Susanne was named 'President Emerita' and given an honorary position for life on the board. She was also given a beautifully engraved lead crystal vase by the other board members as a token of their appreciation. The vase bears the Kennedy's Disease logo at the top and reads as follows " Susanne Waite President & Executive Director, In appreciation for your vision, dedication and hard work August 2005. The board also welcomed a new member, Mary Kathleen (Kathy) Purvis. The board welcomes a new member, Kathy Purvis. Kathy is a lymphoma survivor and Registered Nurse, and has two brothers diagnosed with KD. She has previous volunteer experience with other organizations, including The Heart Exchange, a heart transplant group in Houston, The Anderson Network at M.D. Anderson Center. Her experience and nursing background bring an added dimension to the KDA Board. . Kathy also has assisted the KDA in the past, working with Louise Goforth in transcribing the KDA New Orleans Conference proceedings. Kathy is a sister of Bill Noack, T. J. Noack, and Louise Goforth. New Chat Transcripts Posted The past 3 chat transcripts has been added to the web site. Click Here to go to the transcripts page July 16 - Open Forum August 6 - Kenneth Fischbeck, M.D. August 20 - Learning from challenges in life
08/01/05
KDA Questionnaire Results-
2002 study tallied and report made available Click Here 07/06/05 New Chat Transcripts Posted The past 2 chat transcripts has been added to the web site. 06/18/05- Mobility 07/02/05 - Special Guest - CheunJu Chen, M.D. Speaks about an upcoming clinical trial for Kennedy's Disease and answers questions from the chatters Click Here to go to the transcripts page
06/07/05 New KDA Board Member The KDA is very pleased to announce the addition of 2 new members to the KDA Board of Directors. Ronald P. Wiker has taken the position of Second Vice President and Paul K. Deschamp has taken the position of Third Vice President. Both of these individuals come to us with a lifetime of hard work and experience. You can read their biographies at this link http://www.kennedysdisease.org/aboutus_directors.html Thank you to both of them for their time and enthusiasm in taking on these important roles on the KDA board . New Personal Story We have posted a new personal story from Ronald P. Wiker on the Personal Stories Page Clinical Trial Study The Department of Neurology at Beth Israel Deaconess Medical Center in Boston are conducting a research study involving the development of new technology for the assessment of muscle weakness. Their goal is to develop a new, painless, noninvasive, diagnostic technique called "EIM" (electrical impedance myography) that will be a useful tool in initially evaluating and following patients with neuromuscular disease. The investigators expect that this technique will allow them to follow disease progression in a quantitative way that is not currently clinically available. Study Detail's and Eligibility Requirements
05/05/05 Consumer Group Kicked Off an Online Medicare Network "The Medicare Rights Center , a national consumer group, has launched an online network that encourages people with Medicare and their advocates to discuss problems with obtaining affordable health care. The center's priorities include fighting for easy access to affordable prescription drugs, advocating for people with disabilities to get needed care through Medicare and advancing equal coverage of mental health services Click Here to go the the web site. Or you can access it from the KDA General Tips page.
02/07/05 John Coakley Sr. has sent us a new addition to Coakley's Corner. Please Click Here to read it.
02/07/05 The KDA E-Xpress Archives page has been added to the web site. Here you can read current & past editions of the newsletter. Click Here to go to the page. Cold Feet and KD? here is an explanation http://www.drfoot.co.uk/coldfeet.htm
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