Foundation News

All Things Possible

2019 ALS Advocacy Day | June 11, 2019

This ALS Advocacy Day, the Brigance Brigade Foundation proudly supports the fight on Capitol Hill to move forward legislation that will benefit the ALS community. We stand with The ALS Association, and our partners and friends fighting beside them, as we continue our efforts to improve patient care, advance research and empower people with ALS and their families.

ALS Advocacy Day provides an important opportunity for families battling ALS to actively participate in the fight against this terrible disease. In order to see a cure developed, our country needs to have laws, regulations and resources in place that allow scientists and researchers working towards a cure access to the support needed to make significant progress.

“My brother, Dr. Emile Mohler III, worked throughout his life to understand humanity through science and research. Emile developed a number of inventions and found groundbreaking medical discoveries used to treat patients with cardiovascular diseases. I know he would want ALS researchers to have the same opportunities to discover breakthroughs that could save people’s lives,” said Thomas Mohler, Brigance Brigade Foundation and ALS Association Board Member. “The impact Emile had on my life and others, before and after his diagnosis, speaks to the passion he strived to live with every day. I challenge those on Capitol Hill, and all those fighting ALS, to find that passion and fight to help others bring an end to this disease.”

During the 2019 ALS Advocacy Day, the Brigance Brigade Foundation supports the following initiatives:

Social Security Disability Insurance: Cosponsor the ALS Disability Insurance Access Act (S. 578/H.R. 1407) to waive the Social Security Disability Insurance (SSDI) five-month waiting period for people with ALS.

Department of Defense ALS Research Program: Provide at least $20M in appropriations for FY20202, a $10M increase over funding levels in FY18-FY19, to continue the ALS Research Program (ALSRP).

Centers for Disease Control National ALS Registry: Provide at least $10M in appropriations for FY2020 to continue the National ALS Registry and Biorepository at the Centers for Disease Control and Prevention (CDC).

National Institutes of Health: Provide at least $41.6Bn in appropriations for FY2020, a $2.5Bn increase over FY2019, to allow for meaningful growth above inflation in the base budget that would expand the National Institutes of Health’s (NIH) capacity to support promising science in all disciplines.

“We, as an organization, stand behind the issues set out by The ALS Association as priorities for this year’s ALS Advocacy Day in the nation’s capital,” explains O.J. Brigance, co-founder of the Brigance Brigade Foundation, Baltimore Ravens Super Bowl Champion and ALS advocate of 12 years. “The admirable initiatives that the ALSA is supporting will allow future generations to know a world without ALS, which is our ultimate goal.”

To all those joining together today to make our voices heard on Capitol Hill, we thank you and we stand with you. It is this kind of determination and fortitude that will ultimately move the needle and make a difference for future generations.