The Arizona Chapter of the ALS Association was pleased to send 17 representatives to Washington, D.C. May 10-12, to attend a National Conference and share their personal life stories with Arizona legislators.
A record number of people, 1,100 participants, including 131 people living with the disease, joined forces for this year’s Public Policy Conference on National ALS Advocacy Day. More than 500 meetings with members of Congress and their staffs helped raise awareness of our cause among key lawmakers and advance legislation to improve the lives of people with ALS and speed the fight to find a treatment. For example, since the Public Policy Conference, the House Appropriations Committee Subcommittee on Defense also has voted to provide an additional $7.5 million to continue funding for ALS Research Program at the Department of Defense. If enacted, Congress will have provided nearly $60 million for the program, which is specifically designed to find treatments for ALS.
During this year’s conference, the Association presented a number of awards and recognized people with ALS and other advocates for their efforts to advocate throughout the year. The Arizona Chapter was elated that one of our own, Tom Earl, received an award for Outstanding Advocacy Efforts. This was Tom’s 11th year to attend the conference in Washington, D.C. Tom, who was a caregiver to his wife who passed 13 years ago, continues to go above and beyond to help those who are living with this disease try to find a treatment, cause and a cure.
There were many other empowering, educational and inspiring moments throughout the three day conference. On a personal level, having lost my husband on Christmas Day 2014 to ALS, it was overwhelming to see our daughter, Tuesday Schmidt, and granddaughter, Jaylyn Schmidt, eight years old, stand in front of senators and members of Congress in their offices, and tell their personal stories while advocating for funds to expedite measures to help people living with ALS find a glimmer of hope to eliminate the future of this horrific disease.
As a caregiver for seven and one-half years, advocating is all I can do to try and make a difference. To be able to speak to Arizona legislators and their staffs was very empowering. It gives me hope that someone is paying attention to those of us who have walked the walk and are trying our best to advance awareness in the fight against ALS on Capitol Hill.