May is ALS Awareness Month
In order to find answers about ALS, participation is crucial. The National ALS Registry helps connect people who are living with the disease to researchers looking for answers. This helps researchers learn more about what causes ALS and look for better treatments. Learn more about how we can all fight ALS together at cdc.gov/als.
Brad Dusek and His Fight Against ALS
In May of 2022, the National ALS Registry spoke with Brad Dusek and his daughter Kimmie Dusek Longstreet about their experience with ALS and the National ALS Registry.
“I played football in high school, college, and the NFL. And the way you win is you keep fighting and keep fighting, and that’s what I do. And right now, I’m fighting against ALS.” – Brad Dusek
Brad Dusek played football in high school, then went on to play at Texas A&M University, before being drafted in 1973 to the New England Patriots. He went on to spend most of his career as a linebacker for the Washington Commanders (previously the Washington Redskins). He was also conducted into the Texas A&M University Hall of Fame in 2014.
Brad first noticed symptoms of ALS in early 2017 but was not diagnosed until the fall of 2018. Brad is no stranger to taking on new opponents after playing football for so many years, and he has learned that you just have to keep fighting.
One of the first things the Dusek family did when Brad was diagnosed was register with the National ALS Registry. They knew that gathering information was key to learning more about ALS and its potential causes. Brad’s daughter spoke about the Registry, “That is going to be an amazing feeling that there are families out there that aren’t going to have to go through what we have to go through right now.”
To learn more about Brad, his family, and how they are making a difference with the National ALS Registry, watch the full video at: https://www.youtube.com/watch?v=m8NOodx7GYg.
May is ALS Awareness Month
The Registry could not take place without the help of people living with ALS, caregivers, researchers, healthcare providers, neurologists, and supporters. Everyone touched by ALS has a story; piecing these stories together could ultimately help researchers come to a deeper understanding of the disease.
To find answers about ALS, participation is crucial. The National ALS Registry helps connect people who are living with the disease to researchers looking for answers. This helps researchers learn more about what causes ALS and look for better treatments.
Amyotrophic lateral sclerosis (ALS) is a progressive neurodegenerative disease that affects nerve cells in the brain and spinal cord. The causes of ALS are unknown, and there is currently no cure. The National ALS Registry focuses on collecting information to help scientists learn more about who gets ALS and its potential causes.
May is National ALS Awareness Month, a time dedicated to raising awareness about this disease and the people affected by it. This year, the National ALS Registry would like to thank the thousands of people living with ALS who have already enrolled in the Registry and everyone who has joined together in the fight against ALS.
The Registry could not take place without the help of people with ALS, caregivers, researchers, healthcare providers, neurologists, and supporters. Everyone touched by ALS has a story; piecing these stories together could ultimately help researchers come to a deeper understanding of the disease.
Making it Easier to Participate
The Registry is continuously looking for ways to modernize and improve the ease of access the public has to its data. To that end, the Registry is proud to highlight the creation of a new Dashboard to improve the user experience when visitors come to the Registry’s webpage.
The ALS Registry Dashboard gives visitors an at-a-glance display of the Registry’s latest epidemiological findings on ALS, the current total of completed risk factor surveys, funded research and actively recruiting trials, and the latest stats on Biorepository data. Additionally, the dashboard provides easy shortcuts to reach different sections of the Registry website, such as publications, clinical trials, and annual reports.
By joining the Registry, people with ALS can also be informed about clinical trials and research studies they may qualify for. The Registry makes it simple for you to be part of making a difference in finding answers about ALS.
Helping Your Voice Be Heard
The National ALS Registry has held its Annual Surveillance Meeting in the Fall since 2011. This meeting has been an important way for neurologists, researchers, advocacy groups, and especially patients and caregivers, to provide guidance and direction for the Registry’s initiatives.
Last year’s meeting in 2022 saw a change in format with the meeting being held virtually and invitations open to the general public. The meeting was moderated by ALS Patient Advocate Danielle Boyce and included updates from the Registry’s many research partners, a Patient Perspective Panel where three people with ALS were invited to speak, and a forum for open discussion for the public to participate in. Due to the resounding success of the meeting, along with the public’s support of this new open format, the Registry has decided again to hold the 2023 Annual Meeting virtually and open to the public.
This year’s meeting will be held on August 29th-30th. More information regarding the meeting agenda and invitation details will be provided leading up to the meeting dates.
If you’re interested in finding out about previous Annual Meetings, past agendas, and summary reports can be found at the Registry’s website at: https://www.cdc.gov/als/AnnualMeetings.html
ALS Research Counts on You
ALS Research would not be possible without participation from people with ALS, researchers, caregivers, healthcare providers, and more. The National ALS Registry is proud to work alongside all of these people and other organizations to continue ALS research and aim to find answers.
Learn more about how we can find answers together at cdc.gov/als.