August's KDA President's Message
The Great Road Trip completed its transcontinental journey with a Grand Finale just outside of Rome on Saturday, July 23. This event was hosted by AIMAK, the Italian patient advocacy organization for Kennedy’s disease, and was a great success. KD-UK and KDA are very grateful to all who contributed to the success of the trip and helping to meet our goal of raising awareness of Kennedy’s disease. The little red 2CV traveled about 7,000 miles, visiting 18 cities in the United States as well as Toronto, Canada, Poundbury and London in the United Kingdom, and Milan and Rome in Italy. We also visited SBMA research teams in California, Maryland, Philadelphia, and Milan, all of whom displayed great enthusiasm and energy for the trip. The 2CV’s stops in Buffalo and Philadelphia made the local TV news, and the Great Road Trip was the subject of several newspaper articles in Milan, where we were greeted by an official of the Milan City Council. See the pictures, videos, and blog of the journey at the website: The Great Road Trip.
Thanks to generous sponsors and donors throughout the past three months, we also met our financial goals. After expenses, the Great Road Trip raised over $100,000 for research into this devastating disease. Our focus now is on the November KDA conference where we will award several grants and the first-ever Waite-Griffin SBMA fellowship to KD researchers as an important next step in our efforts to find effective therapies and a cure for this devastating disease. We hope to see you there.
Kennedy's Disease Association
2022 KDA Conference - The Global KDA Family Together Again!
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. Preliminary Agenda, click here.
The NIH Launches a New Kennedy's Disease Study
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.
The Kennedy Disease Association Board of Directors
THE KDA NEWSLETTER
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MDA Engage DME Series: Speech Equipment Webinar On August 16th
For Complications with speech can be present in individuals affected with a neuromuscular disease. This webinar will review the different types of equipment and assistive devices used for speech, who prescribes equipment, and what questions you should ask your provider before obtaining equipment. The featured presenter of this webinar is Carrie Reichwein, MS, CCC-SLP, Speech Language Pathologist at Penn State Hershey Medical Center. To register, click here.
2022 Rare Diseases and Orphan Products Breakthrough Summit
October 17-18 2022. Washington, DC. This year, NORD is thrilled to welcome the rare family and all community stakeholders back together in-person to Washington, DC for the 2022 Rare Diseases and Orphan Products Breakthrough Summit. Join your fellow rare disease leaders from patient advocacy groups, government, industry, and academia for exclusive access to fresh insights, compelling connections, and expert resources. Don’t miss out on #NORDSummit – registration is OPEN now! For mor information, click here.