We attend the Public Policy and Advocacy Conference every year, and it’s always such an amazing time. PALS and their supporters and loved ones get to talk directly to the staffers and congressional leaders who shape our nation’s policies, promoting increased funding for ALS research, and gathering support for laws and regulations that affect the daily lives of people with ALS.
But this year, Advocacy Day was even better, because we were able to take our largest delegation of Texas PALS and supporters yet. Thanks to the generous donations from the Max’s Ride event in Austin, TX, we were able to take 26 people — 5 people with ALS, 6 caregivers and 9 surviving family members — with us to Washington, D.C. When we say every fundraiser, every donation helps, we mean it.
Our Texas Delegation met with 36 Texas congressional and senate offices to ask for increased funding for national ALS research programs like the National ALS Registry and the Department of Defense’s ALS Research Program, and to discuss the importance of expanding access to speech generating devices under Medicare, and quicker access to potential treatments via the Dormant Therapies Act.
As a result of our 2014 efforts, Congress approved a 30% increase in funding to $7.8 million for the National ALS Registry, and $7.5 million in funding to continue the DOD’s ALS Research Program.
It makes such a difference when people whose lives have been affected by ALS can speak directly to congressional staffers about how this research and these laws will improve the lives of PALS across the nation. We’re hopeful that our 2015 efforts will be just as successful as those in 2014, and that we’ll be able to go back with more and more Texans for years to come.