July's KDA President's Message
Welcome to Summer and a time to enjoy family and friends at home and on vacation. Also, two important holidays this month. Happy Canada Day (July 1) and Fourth of July to our Canadian and U.S. members!
This month marks the first anniversary of the CoRDS KD/SBMA patient registry. KDA created this registry at the request of patients following our annual conference in 2020. The registry now has over 300 people from at least 22 countries (30 people did not indicate their country). The United States leads the way with 148 registrants, followed by Italy (21), Canada (20), Australia (17), and the United Kingdom (13). There are also 8 entries each from France and Japan, and smaller numbers from a range of European, Asian, and Latin American countries, reflecting the global nature of Kennedy’s Disease. The data in the CoRDS KD/SBMA patient registry is an important resource for researchers and complements data in clinical registries in several countries. Thanks to everyone who entered data into CoRDS!
The Great Road Trip continues this month in the UK, France, and Italy. The UK portion includes a Patient Day in London on Sunday, July10. From London, the 2CV will celebrate Bastille Day in Paris on July 14 and then head to Milan, Italy, for a major public-relations event on July 18. The Great Road Trip then moves to Rome for a final appearance sponsored by AIMAK, the Italian patient advocacy group for Kennedy’s Disease. When it arrives in Rome, the 2CV will have covered over 6,600 miles across two continents and five countries, raising awareness of Kennedy’s Disease and raising funds to support research into effective therapies and a cure. Keep track of the trip at The Great Road Trip.
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.
The Great Road Trip - Los Angeles to Rome is Off and Running!
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
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
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MDA Webinar: Adaptive Driving
For anyone with a neuromuscular disease, getting from one place to another can be a challenge. This webinar will focus on understanding adaptive driving options and the processes involved. Vehicle modifications will also be discussed along with how to find resources and support for financing an adaptive vehicle. The presenter for this webinar will be Anne Hegberg, OTR/L, CDRS, CDI, Co-Owner and Clinician at STRIVE for Independence. To register, click here.