Julie M. Sharpe, President & CEO, ALS United Greater Chicago
For twenty years, ALS United Greater Chicago has been a leader in advocating for polices that will improve the lives of those living with ALS, their families, and caregivers.
Our strength derives from those living with ALS and their family members whose involvement in advocacy has led to increased federal funding for ALS research, passage of the Medicare waiver for ALS patients, the presumptive disability ruling from the Social Security Administration, and state funding
in Illinois.
Other major accomplishments have been the enactment and appropriation of the ALS CDC registry and securing military veterans service-connected benefits.
Currently, ALS United Greater Chicago Edmund Kucharski Public Policy Award winners, Rep. Quigley, and Rep. Schakowsky, along with Rep. Brian Fitzpatrick and Rep. Jason Crow introduced the ALS Better Care Act H.R. 5663. We are in the process of securing co-sponsors.
We are partnering with I AM ALS for their inaugural I AM ALS Community Summit in May in Washington DC. This summit will be held from May 29th to June 1st. Advocates and community organizations will meet, discuss, and learn from each other about the important issues facing the ALS community, and develop tactics to address these issues. The event will include a display of 6,000 flags on the National Mall, honoring those living with ALS, and those who have lost their battles to ALS.
This coming year we will be aligning the priorities of the ALS community to ensure we continue to make an impact in the fight against ALS and in the quality of life for individuals living with ALS and ALS caregivers.
We ask that you become an advocate today! If you are interested, please register at alsunitedchicago.org/advocacy/become-an-advocate.