September's KDA President's Message

TerryThompson

September signals the end of Summer and beginning of Fall, bringing with it the excitement of football season, a new school year (at least for some kids!), the arrival of cooler weather, and a time to start thinking about family gatherings later in the year.  

We’re excited about this year’s KD family gathering in San Diego on November 9-11, our first in-person conference in three years. Researchers and clinicians will share the latest developments in KD research and offer practical advice about managing symptoms. We’ll also hear updates on clinical trials. 

This year’s conference will feature a Patient-Focused Drug Development meeting including testimonials from KD patients about their lived experience as well as their thoughts about potential treatments until a cure can be found. Their comments will be documented in a “Voice of the Patient” report submitted to the Food and Drug Administration for use in evaluating clinical trial results.   (For more information visit the Patient-Focused Drug Development (PFDD) website by clicking here.  

The conference will be live streamed on Zoom, although some activities, such as the breakout sessions, will be limited to in-person participants. Many people have commented about the value of attending KDA conferences in the past, especially those who have just been diagnosed with KD. So, if you’ve never been to a KDA conference, the in-person option may be your best choice.   And San Diego in November is beautiful, as it is throughout the year.   We hope to see you there!  

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. Preliminary Agenda, 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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2022 Rare Diseases and Orphan Products Breakthrough Summit

 NORD

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.


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