ALS Advocates Make a Real Difference

In recognition of ALS Awareness Month, we’re sharing stories nearly every day in May about how you can Raise Your Voice to join the fight against ALS. Today, on the heels of this week’s successful National ALS Advocacy Conference, we’re talking about why we need you to Raise Your Voice as an ALS Advocate.

Why do we advocate? Why do we share our stories? Why do we write letters and ask our friends and family to do the same?

Because advocacy truly makes a difference. In February, our ALS Advocates helped make the Steve Gleason Enduring Voices Act a law.

Each year we go to Capitol Hill to ask for federal funding for ALS research. We ask members to support appropriations for the National ALS Registry at the Centers for Disease Control, the ALS Research Program at the Department of Defense, and ALS research being done through the National Institutes of Health. We urge members of Congress to cosponsor legislation, like the ALS Disability Insurance Access Act (H.R. 1171/S. 379) we’ve asked them to support this year.

Just this week, we hosted our annual National ALS Advocacy Conference in Washington, D.C. More than 500 ALS Advocates participated. They spent the day on Capitol Hill yesterday meeting with House and Senate representatives form their respective states. It was a powerful and inspiring day.

But, to keep fighting toward a world without ALS, we need even more advocates to help. Here’s why…

Advocates raise awareness by sharing their stories and their passion with congressional offices. Every member of the ALS community has a story and its important that congressional offices hear them – from people with ALS and their families and friends, from caregivers, from doctors, and from researchers.

While The ALS Association staff can visit with offices to tell stories and give statistics, advocates make the statistics real. It’s hard to deny the need when the reality is right in front of you.

Personal stories go straight to the heart. Not only do emotional asks work, but members of Congress will remember and repeat them. We remember stories. We don’t confuse stories like we may statistics. We connect with and retell stories.

It’s easy to explain the struggle a five-month delay in Social Security Disability Insurance and Medicare coverage causes families, but a story of how it has impacted one family takes it out of the realm of the hypothetical.

We need to find a cure for ALS. We have scientists working in their labs around the world, but they need resources. Our ALS Advocates, through efforts on Capitol Hill, support the scientific work by encouraging Congress not to cut off funding for vital research. When we can show how a new treatment could help, or why a cure is needed so badly, we can spur members of Congress into action.

Social media is an easy and highly effective way to take action. Members of Congress know how quickly one Facebook post or Tweet can become viral. They use social media to reach out to constituents and constituents communicate to their Representatives and Senators on social media. You can connect in less than 280 characters and a simple hashtag.

Everyone can be an ALS Advocate – young, old, male, female, introvert, or extrovert. In fact, many people are already advocates for something or some cause and many not even know it.

If you want to become more involved in advocacy, sign-up to become an ALS Advocate. You will receive e-mails with legislative updates and ways that you can take action. To learn more, visit the Advocacy section of our website.

In honor of ALS Awareness Month, please Raise Your Voice to elevate the fight against ALS for all people living with the disease.

 Even if you’re not ready to contact your representatives in Congress, you can update your Facebook profile with the ALS Awareness frame. You can recruit your friends to like our Facebook page or follow us on Twitter. You can promote or host a fundraiser. Or, you can register to participate in a Walk to Defeat ALS or a Team Challenge ALS event.

Raise Your Voice however you can. Together, we will be heard.

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