Cheryl Goes to Capitol Hill

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Our delegation in front of Mike Thompson's office - 5-8-14On May 8th, National ALS Awareness Day, Cheryl joined other ALS Advocates from around the United States to go to Capitol Hill to increase the awareness of Congress about the impact of ALS on the lives of people living with the disease and to request Congressional action on four public policy priorities of the ALS Association.

As part of a delegation of five ALS Advocates from the Association’s Golden West Chapter, Cheryl met with representatives of eight members of Congress. She shared with them the story of Ismail’s battle with ALS and his determination to continue to live a happy and productive life. She also asked for Congress’ help in funding additional research to find the cause and cure of ALS. Those who heard it were moved by Ismail’s story of courage, determination, and optimism.

In honor of the 75th anniversary of Lou Gehrig‘s historic speech, each member of Congress received a deck of ALS Awareness Baseball Cards, featuring the pictures and personal stories of many individuals, including Ismail, who are living with ALS.

The ALS Advocates made four requests of Congress:

  1. Appropriate $10 million to continue and expand the functions of the National ALS Registry at the Centers for Disease Control and Prevention, which allows the ALS Association to collect data that may help determine what causes the disease and how it can be treated, prevented, and, ultimately, cured.
  2. Appropriate $10 million to continue the ALS Research Program (ALSRP) at the Department of Defense (DOD), which would enable the funding of additional research projects to find new treatments for ALS for veterans (who have twice the risk of developing ALS than the general population) and for others living with the disease.
  3. Enact the MODDERN Cures Act (H.R. 3116), which would accelerate the research for a treatment of ALS and other diseases by removing the barriers that limit medical innovation and by providing incentives to develop new treatment and diagnostic tools that can improve, prolong and, ultimately, save lives.
  4. Ensure access to Speech Generating Devices (SGDs) to people with ALS by stopping a new regulation for the Centers of Medicare and Medicaid Services (CMS) that changes the manner in which CMS pays for speech generating devices and, by doing so, limits the ability of people with ALS to access SGDs.

Cheryl shared Ismail’s story and information about Tears, Laughs and Triumphs with the many ALS Association representatives and fellow advocates she met at the Public Policy Conference. She looks forward to continuing her ALS advocacy work.