April's KDA President's Message
Did you ever wonder how Kennedy’s Disease got its name? Spoiler alert. Dr. Kennedy did not name the disease he discovered after himself. Here’s the real story as told by his wife.
“Bill named the disease something long with “bulbar” and “late onset” in it that was so long people forgot it. I’m his wife and I forgot it. A friend of his – a Belgian doctor – told him he gave a talk on “Kennedy’s disease." Bill asked him why he named it that. He said, “Oh, I thought it would be fun".
“Bill really thinks that naming diseases after a person is unscientific but said nothing. He was just surprised. Anyway, everyone, including the Japanese, knew of President Kennedy, used it, and that was that. So, we’re fortunate that an early researcher decided to use a shorthand way to refer to Spinal Bulbar Muscular Atrophy (SBMA) with the name of the doctor who discovered the disease. And the name of that doctor happened to be identical to the former US. president, giving SBMA a name that is recognized the world over. - Used by permission of Mrs. William Kennedy.
KDA Annual Conference 2021
October 28th and 29th — SAVE THE DATE! We're going virtual one more time. Evaluations from the 2020 conference were overwhelmingly positive, with many who would not otherwise have been able to attend expressing their appreciation for the opportunity. The virtual format allowed us to reach many more people in a much greater geographical area, and the quality of the talks were outstanding. We hope to do as well or better this year. More details will be coming out soon, but for now, please put Thursday and Friday, the 28th and 29th of October, on your calendar for the 2021 KDA Conference!
Men with KD - Help the NIH Understand
A Quality-of-Life survey is being conducted by the National Institutes of Health (NIH) along with the University of Rochester. They are studying the issues and symptoms that are most important to patients with spinal bulbar muscular atrophy (SBMA). You have the opportunity to provide your insights about SBMA and help researchers ask the right questions. This information will help the NIH and other researchers determine the most important outcome measures to monitor during future SBMA clinical trials.
You are eligible for this research study if you are a man who has Kennedy's Disease and are 18 years of age or older. The survey will take 20-30 minutes to complete and all responses are completely anonymous.
Coming Soon - a KD Patient Registry
At the October 2020 KDA-KD/UK conference, several pharmaceutical companies are starting to think about clinical trials of potential treatments for Kennedy’s Disease. Clinical trials are lengthy studies of the effects of a drug or therapy on human participants. They are designed to answer specific research questions.
The good news for SBMA patients is that there ARE MULTIPLE COMPANIES currently designing clinical trials for KD treatment. To prepare for these trials, we need your help fill in the KD patient registry!
The KDA has recently signed an agreement with Sanford CoRDS to build a patient registry for SBMA patients. We ask that you be prepared to enter your personal health history and your experience with Kennedy’s Disease into the CoRDS system that we will use to recruit participants for future clinical trials. Information gathered will be key to patient participation in future clinical trials that, we all hope, will lead to a successful treatment of this debilitating disease.
Thank you from the KDA Board of Directors
COVID19 vaccination in patients with spinal and bulbar muscular atrophy
The Sunnybrook ALS/Neuromuscular clinic at the University of Toronto follows a large number of patients with Kennedy’s Disease (KD). Since patients with KD may experience respiratory impairment and are at increased risk of complication of respiratory infections. The Sunnybrook clinic recommends that KD patients be a priority group to receive vaccination for COVID-19. To read the letter, click here.
Dr. Christopher Grunseich, MD, a staff clinician at the National Institutes of Health has evaluated patients with spinal and bulbar muscular atrophy (SBMA) in multiple clinical studies and mentions in a letter that serious, life-threatening complications due to Covid 19 would be mitigated with COVID19 vaccination. To read the letter, click here.
THE KDA IS AWARDED $2020.00
The KDA is awarded $2020.00 by the eubio medical division. The award was given to the KDA by the Eubio Medical Division. Eubio has championed the study and treatment of countless diseases. The KDA was Eubio's December 2020 featured charity organization and award recipient. To read more about the gift and about the Eubio organization, please click here.
The KDA was nominated in honor of the late Dr. George Napper, Jr., who was diagnosed with this rare disease over 30 years ago. Inspired by his dedication and commitment to his wife of more than 58 years, Delores, Dr. Napper’s impressive career includes becoming the first Black police chief of Atlanta and serving as commissioner of what is now the Georgia Department of Juvenile Justice. An author and criminal justice professor, he also taught at Spelman, Clark Atlanta, and Emory Universities. This nomination was made by Dr. Napper’s son, Chipp Napper. The KDA board thanks the Eubio organization and Mr. Chip Napper for the nomination. To read more about the life of Dr. George Napper, click here.
2021 Living Rare, Living Stronger NORD Patient and Family Forum
June 26th and June 27th is the 2021 Living Rare, Living Stronger NORD Patient and Family Forum, a two-day virtual event bringing together rare patients and families to learn, network and participate in wellness and entertainment sessions. With many educational topics offered for undiagnosed, newly diagnosed and long-term patients and caregivers, attendees may customize their schedule to best fit their interests. Your registration also includes a ticket to the Rare Impact Awards on June 28th, an annual celebration honoring the individuals, groups and organizations making a difference by going above and beyond for the rare disease community. For more information, click here.
Rare Diseases and Orphan Products Breakthrough Summit October 18-19, 2021
The 2021 NORD Rare Diseases and Orphan Products Breakthrough Summit will bring the rare disease community together for education, collaboration and networking on October 18 and 19, 2021. For more information on this event, click here.
Want to help make a difference while you shop in the Amazon app, at no extra cost to you? Simply follow the instructions below to select "The Kennedy's Disease Association" as your charity and activate AmazonSmile in the app. Amazon will donate a portion of your eligible mobile app purchases to us.
How it works:
1. Open the Amazon app on your phone
2. Select the main menu (=) & tap on "AmazonSmile" within Programs & Features
3. Select "The Kennedy's Disease Organization" as your charity
4. Follow the on-screen instructions to activate AmazonSmile in the mobile app