WASHINGTON -- Today, Representatives Brian Fitzpatrick (R-PA-01), Jason Crow (D-CO-06), Ken Calvert (R-CA-42), and Terri Sewell (D-AL-07) introduced a resolution designating May as ALS Awareness Month to raise awareness about the challenges faced by ALS patients and their families.
"There are approximately 5,000 new ALS diagnoses per year in the United States, each one bringing a new set of challenges and difficulties to American families. They need our support on the federal level to support enhanced research and treatment options,“ said Fitzpatrick. “Tens of thousands are fighting ALS right now. We must continue to bring awareness to ALS, and this resolution is a great step in doing that.”
“Every day, 15 Americans are diagnosed with ALS. It is a disease that knows no stranger and has affected families across the country, including my own. My family lost our young and vibrant cousin Jeff to this disease. His story shows us that there is still much more research and funding needed to tackle ALS,” said Crow. “The first step to finding a cure is making sure we raise awareness about the challenges of this disease but also the incredible resiliency and hope ALS patients have shown in the face of adversity. ALS Awareness Month is a time for us to lift up those stories and come together in the fight for a cure.”
“ALS Awareness Month is an opportunity to highlight the inspirational fight being waged by those afflicted with ALS to find cures and treatments that will prolong and improve their lives. It’s also a time to remind those diagnosed with ALS that this isn’t a fight they face alone. The House ALS Caucus is one of many organizations dedicated to advancing ALS cures, therapies, and game-changing ALS solutions. Together, we will win the fight,” said Calvert.
“ALS is an incredibly debilitating disease that impacts thousands of Americans and their loved ones,” Sewell said. “It is my hope that continued research and awareness will help us find enhanced treatments and – one day – a cure for this horrible disease.”
“More than focusing the attention of the American public on ALS as a relentless and always-fatal disease, the House resolution has the potential to inspire significant support for an urgently needed cure,” said Calaneet Balas, president, and CEO of The ALS Association. “We have a great need in our ALS community, but we also have great hope that the awareness this resolution will generate will lead more people to take action to fight ALS any way they can.”
"We are grateful to the commitment of Congressman Crow in pushing forward this important resolution. It is awareness efforts such as this that allow for others to understand that ALS is a disease that affects every community with no ethnic, racial, gender or socioeconomic boundaries and is, therefore, a fight we all must be apart of," said Danielle Carnival, CEO of I AM ALS.
In June 2019, Fitzpatrick, Crow, Calvert, and Sewell, launched the bipartisan ALS Caucus. The ALS Caucus brings together members of Congress from both sides of the aisle to share experiences, exchange ideas, and work collaboratively to find a cure for amyotrophic lateral sclerosis (ALS). The caucus was formed with the help of I AM ALS and many ALS advocacy groups, including The ALS Association and others.
ALS is a progressive neurodegenerative disease that affects the body’s motor neurons causing decreased mobility and eventually leads to death. The ALS Caucus seeks to raise awareness about the challenges faced by ALS patients and their families, think creatively about policy solutions to reduce the negative impacts of ALS, and invest in groundbreaking research to end ALS.
Copy of the bill text can be found here.