News & Stories

United and Empowered Through ALS Advocacy

ALS United Mid-Atlantic advocates visited with Senators and Congress Members in Washington, DC, on Tuesday, April 30th, to discuss the ALS Better Care Act and funding for ALS research. Thank you to all who shared their powerful stories.

ALS United Mid-Atlantic advocates use their stories to make an impact for all those affected by ALS. Advocates Sarah Brendle and Lenny Rafalko talked with Pennsylvania Congressman Brian Fitzpatrick about the need to pass the ALS Better Care Act and Dr. Stacy Lewin Farber testified to the New Jersey Assembly Budget Committee about fully funding ALS care. These stories make a significant impact on advancing our priorities.

This year, ALS United Mid-Atlantic is joining a coalition with other ALS organizations to continue our progress by partnering with I AM ALS at their ALS Awareness event.

From May 29 to June 1, I AM ALS is hosting its 3rd annual ALS Awareness Month flag event in DC and has invited ALS United Mid-Atlantic to collaborate. This will be an incredible event with opportunities to raise awareness, be a legislative advocate, and learn from each other.

To learn more about this event, click here:



ALS United Advocates Show Their Power Across the Country

In January, New York Governor Kathy Hochul proposed $25M in the state budget for ALS Research. The budget passed on April 20th with the full $25M being allocated for grant awards to institutions and facilities to carry out research and treatment of ALS and funds allocated for services for those living with ALS. ALS United Greater New York commends Governor Hochul and the New York state legislators for allocating this funding and recognizing the urgency of this issue. This allocation signifies a crucial step forward in our collective efforts to combat this devastating disease and improve the lives of those affected by ALS. With the continued support of our community and policymakers, we can turn the tide against ALS and work towards a future free from this devastating illness.

ALS United Connecticut participated in the Connecticut Rare Disease Forum on Thursday, March 7th, at Jackson Laboratory in Farmington, CT. Executive Director Jacky Rose and Amy Chickles shared their knowledge about ALS and highlighted their vital local care programs. This forum brought together researchers, investors, non-profits and others to discuss research and innovation in Connecticut for Rare Disease.

ALS New Mexico held an ALS Awareness Day on February 5th at the State Capitol in Santa Fe, NM, to bring attention to the ALS cause and to highlight the need to fund critical care programs for ALS families. Advocates from across the state joined to educate legislators about the concerns facing people living with ALS. Thank you to State Senators Maestas and Jaramillo for championing our cause.

It was a tremendous honor for ALS United Rocky Mountain and their advocate, Jim Wahl, to take part in the 2024 Chronic Disease Awareness Day at the State Capitol in Denver, CO, on March 22. Together, they addressed crucial legislation aimed at enhancing healthcare access and affordability for our ALS community.

ALS United Rocky Mountain extends their sincerest appreciation to the Chronic Care CO Collaborative and Senators Jessie Danielson, Dafna Michaelson-Jenet, Tony Exum, Paul Lundeen, Chris Hansen, and Kyle Mullica for graciously engaging in discussions with us. This support is invaluable as we work towards improving the lives of those affected by ALS.

ALS United North Carolina invited participants at the Triangle Walk ALS event in Raleigh, NC to sign a letter to NC Senators and House Representatives encouraging them to sign on as co-sponsors for the ALS Better Care Act. Hundreds of signatures were added, and enthusiastic advocates were encouraged to take photos and post them to social media to increase ALS Awareness and advocacy efforts. These efforts to grow the NC ALS Advocacy team and increase ALS awareness will continue to be offered at the NC Walk ALS events throughout the state this spring and fall.

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