You Are Part of Finding a Cure for ALS—By Being an Advocate

The role we can play as individuals in finding new treatments—and a cure—for ALS can seem small. Most of us aren’t world class medical researchers. Most of us don’t have hundreds of thousands of dollars to donate to funding those doing that research. Our role in fighting ALS seems minor by comparison, but it isn’t. By adding our voices to the chorus of voices advocating for people with ALS we can—and do—play an important part of the fight for a cure.

As we continue with ALS Awareness Month, we wanted to look at ALS advocacy and explore what is being done, what can be accomplished, and what you can do.

Much like research, advocacy for ALS never stops. On the national level, The ALS Association focuses on educating, advocating and mobilizing all members of Congress in a bipartisan fashion to achieve its goals. Currently, the focus is on:

Waiving the Five-Month Waiting Period for Social Security: Under current law, people with ALS who qualify for Social Security Disability Insurance (SSDI) must wait five months before receiving SSDI and access to Medicare. The ALS Association is advocating for pending legislation that would eliminate the five-month waiting period for people with ALS.

Preserving and Increasing Federal Resources for ALS Research: This includes providing at least a $20 million appropriation to continue the ALS Research Program (ALSRP) at the Department of Defense (DOD); providing a $10 million appropriation to continue the National ALS Registry and Biorepository at the Centers for Disease Control and Prevention (CDC); and continuing ALS Research at the National Institute for Neurological Disorders and Stroke and other Institutes at the National Institutes of Health (NIH).

Access to Home Health Services: Achievable policy solutions are needed to improve access to home health services for people living with ALS. The ALS Association continues to educate and advocate with the current Administration and Congress on the home health needs of people with ALS as well as identifying ways to remove barriers.

Representing People Living with ALS on Access to Health Care and Medications: The ALS Association closely monitors emerging legislative and administrative proposals to determine their impact on access to health care and medications for people with ALS and their families.

While advocating for these goals is ongoing, each year hundreds of ALS Advocates gather in Washington, D.C., for National ALS Advocacy Conference to learn about the latest ALS research and visit Capitol Hill to share their stories and gain legislative victories. ALS advocates join with ALS Association staff from local chapters to visit with their Senators and Representatives to share what has been accomplished and to ask for help with what still needs to be done. This year’s conference and Capitol Hill visits will be June 9-11.

How can you lend your voice? Sign up to be an ALS Advocate. Simply visit: www.alsa.org/advocacy/get-involved and complete the sign up form.

The ALS Association ensures that advocates are empowered with the information and tools to make a difference in the lives of those living with ALS. Advocates add weight to other voices on Capitol Hill and in state capitols across the country by sharing their passion and stories with elected officials and their staff to help advance legislative priorities. As an ALS Advocate you will:

  • Educate decision-makers on the latest research and needs of people with ALS
  • Develop relationships and educate your members of Congress
  • Participate in legislative action alerts via email, among other advocacy-related activities

Above all, remember that your voice—and your story—matters. We cannot know when one email, or one letter, or one phone call, might make the difference between funding being approved or not approved. As we approach the 5th anniversary of the Ice Bucket Challenge this summer there has never been more energy and hope around ALS research and the potential for new treatments and a cure. By advocating for that work we can all be part the successes that will be achieved.

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