The disease that took the life of baseball hall of famer and Phi Delt Brother Lou Gehrig is gaining support in Congress recently with the creation of the ALS Congressional Caucus and the introduction of legislation targeted to expedite research for a therapy or a cure—both involving significant leadership from US Senator Michael Braun, Wabash ’76.
“I joined the Phi Delta Theta Fraternity in 1972, almost 30 years after Lou Gehrig passed away from ALS,” Senataor Braun said. “I have come to know too many other brave Americans that have lost their battle against ALS.”
A group of bi-partisan ALS champions on Capitol Hill led the effort to create an ALS Caucus in Congress over the last year, with Senator Braun co-chairing the effort in the Senate. Many members have been personally impacted by the disease and are working to recruit more representation this year. The goal of the caucus is to activate a network of advocates within the Senate and the House of Representatives to support ALS measures, raise awareness for the disease, and develop and propose policy solutions and budget measures for research.
House Bill 7071 “Accelerating Access to Critical Therapies Act” focuses on accelerating access to clinical trials for ALS patients by making $75 million available to expand access to treatments for diseases that don’t currently have effective therapies, and establishes a Center of Excellence for Neurodegenerative Diseases at the FDA.
Senate Bill 3872 “Promising Pathways Act” provides for a provisional pathway for FDA approval of medications that treat diseases that progress rapidly and have few to no treatment options, such as ALS. Pandemics, like COVID-19, are also included in the bill. Ultimately this pathway will deliver medication into the hands of patients who desperately need them.
Senator Braun introduced the Senate Bill in June. He said, “For individuals with life-threatening, serious diseases, timely access to treatment is an essential element in the battle between life and death. The Promising Pathway Act will promote innovation and expedite beneficial outcomes for patients who don’t have years to wait for access to safe and effective treatments.”
Phi Delts Are Invited to Take Action On Pending ALS Legislation
“This is a moment where Phi Delts nationwide can make a difference for ALS,” said LiveLikeLou Foundation Vice Chair and Brother Gaylon Morris, Southwestern ‘87, who has been monitoring recent legislative initiatives and is calling on Phi Delts to get involved.
“We are partnering with other ALS advocacy groups to push for congressional support when and where we can make an impact,” Gaylon said. “Five minutes on email or a quick phone call to your Representative or Senators can be the difference in getting this important legislation passed.”
The IAmALS Foundation is a national ALS patient advocacy group that has developed a web-based tool to quickly check each US Senator or Representative’s involvement with the ALS Caucus, and to easily ask them to support Senate Bill 3872 or House Bill 7071 by sending an email or a letter.
“Advocacy for change is easier in these days of online petitions and social media, and it can be a meaningful way for Phi Delts across the country to make an impact on this devastating disease,” said LiveLikeLou Director Suzanne Alexander.
Phi Delts are invited to visit IAmALS.org/Action to advocate with congressional representatives from your state or district.
“It all counts, especially in an election year,” said Gaylon.
