May's KDA President's Message

TerryThompson

April was National Volunteer month, and I would like to recognize the volunteers who have gotten KDA’s year off to a great start.  In February, Fred Briones sponsored a Rare Disease Day event in the Bay Area that raised over $22,000 for KD research. In March, KDA Co-founder and President Emeritus Susanne Waite met the ship bringing the Great Road Trip’s Citroen 2CV to the U.S. and stored it at her house until the KD-UK team arrived in April to start the trip. Susanne also drove the 2CV from Hollywood to Santa Monica.  Dr. Al La Spada and his research team at the University of California, Irvine, hosted the official launch of the trip, while Denise Hill scouted out the best places for photo opportunities in LA and San Diego.  Denise and Simon Hill raised over $3,000 in sponsorships when Simon drove and rode in the car from San Diego to Flagstaff, and Dale Traxler provided shirts and caps emblazoned with the Great Road Trip logo.  The team was welcomed in Santa Fe by longtime KDA supporters Smokey and Elaine Daniels, who provided free accommodations and organized a public event for the 2CV.

Elsewhere in April, KDA received a huge boost thanks to the work of Louise Goforth, Ed Noack, and their team with the resumption of the KD Golf Scramble in Texas. This year’s tournament raised $40,000 for KD research! And the all-volunteer KDA Board of Directors has been working on this year’s KDA conference, “The KD Family: Together Again.” Watch for the conference announcement in the coming days. Thanks to all our volunteers – your support is invaluable to KDA’s continuing efforts to find a cure! 

Thanks for your continuing support of the KDA and our efforts to find a cure. 

Terry Thompson
President
Kennedy's Disease Association


2022 KDA Conference - The Global KDA Family Together Again!

2022KDAConference

The 2022 KDA Conference will be held on November 9 -11 at the Holiday Inn Bayside in San Diego or virtually on Zoom. While attendance at our annual conferences has greatly increased as a result of the virtual format, we have missed the personal connections and collaboration that occur when we meet in person. This first "hybrid" event will give us the best of both worlds. As always, we are planning presentations on the many facets of Kennedy's Disease: the latest information that contributes to our understanding of it, what works for those who are dealing with it, and what is being done in the research community to develop a treatment. In addition, we will conduct a Patient-Focused Drug Development Meeting in coordination with the Food and Drug Administration so that FDA can hear directly from patients, families, and caregivers about the symptoms that matter most to them and the impact of the disease on their daily lives. For more information about the conference, click here


 The Great Road Trip - Los Angeles to Rome is Off and Running!

https://www.thegreatroadtrip.net

GreatRoadTripStart

The Great Road Trip is off and running. The team arrived in Los Angeles on Easter Sunday and visited a few iconic spots in the city.  Here is a picture of KDA co-founder and President Emeritus Susanne Waite with the 2CV in front of Mel's Diner. To learn more and to sign up to participate, visit https://thegreatroadtrip.net


 2022 KDA GRANTS AND FELLOWSHIP PROGRAM 

The KDA is pleased to announce the launch of our 2022 research grants program and the first-ever "KDA Waite-Griffen SBMA Fellowship".

The Kennedy's Disease Association (KDA) is planning to fund one or more research grants this year to further the understanding of the pathological mechanisms or possible treatments of Kennedy's Disease. Funding for each grant can be up to $75,000 for one year or $50,000 per year for two years. Applications from junior investigators and from senior post-doctoral fellows are encouraged.

The fellowship will provide a one-year stipend of $75,000 for a junior PhD or MD interested in a career in SBMA research and/or patient care, and is named after Terry Waite and Patrick Griffen. Terry Waite and Patrick Griffin met at a 1999 conference for Families of Spinal Muscular Atrophy. During a special breakout session for patients with SBMA, the men discovered that they both had created websites to share information about Kennedy’s Disease and both had plans to start a non-profit organization to support research into SBMA Terry and Patrick combined their email lists and, with a lot of help from Terry’s wife Susanne, established the Kennedy’s Disease Association (KDA) in 2000. Today, the KDA has grown to over 1,500 associates from many countries. To honor these men, the KDA is pleased to offer a career-development fellowship for SBMA research.

Your proposals must be received by Monday, July 1, 2022. 2022 Research grant information, click here. Fellowship information, click here. 


The NIH Launches a New Kennedy's Disease Study

The NIH has launched a new study titled "Clinical, Molecular and Imaging Biomarkers in Spinal and Bulbar Muscular Atrophy (SBMA)". The study is underway and men with Kennedy's Disease can volunteer for this study. The object ot the study is to identify measurements that change over time in SBMA, including tests of muscle strength and function, as well as measurements of muscle and fat size. For more information regarding this study, please click here. To watch a video presentation of the study, click here. Candidates can contact This email address is being protected from spambots. You need JavaScript enabled to view it. at NIH for information or to volunteer for this study. Angela's email is This email address is being protected from spambots. You need JavaScript enabled to view it. 


New KD Global Registry

We need your help! We’ve heard from patients and researchers about the need for a patient registry for Kennedy’s Disease also known as Spinal and Bulbar Muscular Atrophy - SBMA. We’re pleased to announce that the KD/SBMA registry is now ready for your data!

The KDA is partnering with the Coordination of Rare Diseases at Sanford Health (Sanford CoRDS) to create a global registry of KD/SBMA patients and carriers. This registry will facilitate KD/SBMA research and will be used to recruit patients for clinical trials. Most important, a robust registry will provide a roadmap for investigators and will help them develop improved treatments and potentially a cure for this debilitating rare disease. Here are a few important things for you to know about the KD/SBMA registry.

  • The KD patient registry was developed jointly by NIH and the KDA.
  • KD patients and carriers are all urged to enter your data. There is a separate form for carriers.
  • Entering data into the registry requires completing the CoRDS profile and two questionnaires, the CoRDS standard questionnaire and the KD/SBMA questionnaire. The entire process should take about 30-45 minutes (less for carriers) and does not have to be done all at one sitting.
  • Data can be entered into the registry online, on paper, or by phone with Sanford CoRDS. To learn more, click here.  
  • There is no cost for entering your data into the registry.
  • To protect your privacy, each participant is assigned a Global Unique Identifier that enables de-identification (anonymization) of the data when shared with researchers approved by Sanford Health’s Scientific Advisory Board. Your name and other identifying information will not be shared.
  • Providing your consent to give KDA access to your data will allow us to contact you for studies and clinical trials and help improve our understanding about where to drive our research.
  • KDA’s goal is to make CoRDS the global repository for KD/SBMA patients. The registry is compliant with U.S. Federal law and the European Union’s General Data Protection Regulation.

Please enroll today, either online or by phone: To enroll online, click here or simply call CoRDS at 1-877-658-9192 and they will enter data on your behalf.

Thank you!

The Kennedy Disease Association Board of Directors


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