On May 18, 2022, several guests joined ALS Texas for a special virtual ALS advocacy event. During this insightful presentation, they discussed their experience as ALS advocates, what victories they’ve observed over the years, and how you can join the fight as an advocate. Keep reading for a recap of this exciting event!
Fighting Locally to Impact National Policy
When discussing ALS Advocacy, it’s easy to assume it starts at the White House, but that’s far from the case. In fact, the most important work you can do is with your locally elected officials. Director of Advocacy at the ALS Association, Ashley Smith, joined us to discuss this grass roots approach.
Ashley grew up in San Antonio and felt eager to connect with our ALS Texas community. “I’m always excited to talk to all of our Texas Advocates about how we empower people living with ALS, their loved ones, and the entire ALS community to advocate on behalf of themselves,” she shared.
Through her position, Ashley empowers people across the country to advocate on public policies that will impact people with ALS and their caregivers. Advocacy takes place at EVERY level of the government. From mayors to council members, all the way to the House, Senate, Congress, and President, but it all starts locally.
The ALS Association accomplishes this mission in several ways:
- Sending action alerts to registered ALS advocates to equip them to speak up and advocate for key issues.
- Engaging in in-person efforts, like district events, meetings, and conferences through the year.
- Partnering with other advocacy organizations
“We will partner with anyone who wants to work with us and who has a voice in this space,” Ashley noted. There are many ALS organizations across the country that participate in ALS advocacy efforts, like I AM ALS and the Muscular Dystrophy Association. Additionally, other rare disease organizations partner with the ALS Association as those policies can impact multiple rare disease communities.
For example, the 2015 Steve Gleason Act, spearheaded by Team Gleason, ensures all those who medically need communication devices will have them covered by Medicare. This massive win not only impacted the ALS community but disease communities whose illness affects the voice.
As a collective, we have more power and can reach many more members of Congress than we can as a singular effort. – Ashley Smith
A Veterans Perspective on Advocacy: Juan Reyes
Juan Reyes, Air Force Veteran with ALS, joined the panel to share his experience. Since his diagnosis in 2015, Juan has become an incredible advocate for the ALS community, especially other veterans. Juan and his wife, Meg, felt inspired by the countless other people with ALS and their caregivers. They watched as those advocates used their voice to make things happen. “That’s what I caught the bug,” Juan shared, “It really infuses us with light, energy, love, and just the momentum to keep moving forward.
Juan recalled previous years when the Advocacy Day was held in-person in Washington D.C., his first experience being in 2016. Hundreds of ALS families came to the capitol, using their walkers, rollators, canes, and wheelchairs. “Making our presence known, it’s a time to bear hope,” Juan shared. There he had the opportunity to engage with elected officials and their staff to advocate for the community.
He shares with them his story, how he and Meg adopted three beautiful children and how this disease affects them all. How his military service made him twice as likely to be diagnosed with ALS than civilians. He also makes a point to share new studies that show there are certain career fields within the Armed Services are up to 10 times more likely to develop ALS.
He also shares the challenges that the general population experiences with this disease, especially given our nation’s healthcare system. He’s proud to have seen things big ticket items pass like the ALS Disability Insurance Access Act, which eliminated the waiting period for SSDI benefits for people with ALS, and ACT for ALS Act which creates better access to promising treatments for people with ALS.
Juan looks forward to what advocacy advancements are down the road and the moments he’ll have with his family along the way. “Although ALS makes every day challenging, I personally live by the rule, life is beautiful and amazing even with a terminal condition.”
Finding Power through Your Story: Sunny Brous
Sunny Brous was diagnosed with ALS in 2015 right before her 28th birthday. She’s been featured in many publications and partners with both local and national ALS organizations to advocate for change. Most importantly Sunny has found her voice and shares her experience on her blog SunnyStrong.com.
Since her diagnosis, Sunny has been to Capitol Hill three times, twice with the ALS Association and once with a rare disease legislation org. “Though those experiences were completely different, it’s still amazing to be able to be at the heart of where change happens and be able to own my voice through my story,” she shared.
Sunny encourages anyone that is even interested in advocacy to join the movement because of how simple it is. “They make it so easy. They send you the form letters, they tell you who you’re contacting, they draft the social media posts,” she shared. She noted they will even help you prepare points and your story if given a chance speak with an official.
Most recently, Sunny was thrilled to play a role in getting the ACT for ALS passed. “Getting to sit in my living room and watching President Biden come in and sign that into law just is amazing.” Sunny is testament to how people living with ALS benefit from these new laws. Through compassionate use, she receives a promising medication from the HEALEY ALS Platform Trial.
Being able now to participate in finding that next medication, finding that next therapy that makes this disease chronic and not terminal really rejuvenates my spirit and empowers me to keep going, Sunny Brous.
Sunny hopes that others will find the courage to join the fight against ALS as an advocate. Everyone has a story to share and deserves to have their voice heard. If you’re not ready to share your story, share Sunny’s story, share Juan’s story, share the stories from our community. “Anything you do is worthy of being shared and this community is better because of your voice,” Sunny shared.
How You Can Become an Advocate
From increasing funds for ALS research to the passing of the ACT for ALS Act, advocates across the country have helped make massive waves in public policy. But the fight isn’t over. We hope to make some significant advances in 2022, including:
- Expand federal funding for ALS research
- Ensure swift consideration and approval of new drugs at the FDA
- Create more opportunities for people living with ALS to access new and emerging ALS treatments
- Optimize Current Treatments and Care
- Advocate for programs in Texas that improve the lives of people living with ALS and their loved ones
None of this is possible without you! Will you join the fight? Become an advocate in three easy steps below:
- Sign up to become an advocate by visiting alstexas.org/action.
- Keep an eye our for email notifications from our Advocacy team to take action! It’s as easy as clicking a button!
- Share stories from the ALS community to ANYONE who will listen! Storytelling is a powerful tool to raise awareness to this disease.
You can also join us for the 2022 National ALS Virtual Advocacy Conference from June 14 – 16. During the conference, attendees will learn the latest updates in ALS research, care services, and advocacy.
Join the Virtual 2022 National ALS Advocacy Conference
Together, we can create a world without ALS!
To hear more from Ashley, Juan, and Sunny about their advocacy experience, watch the full event recording below!
John Robinson from Parish, FL, a member of the board of trustees of the ALS Association and retired military veteran of nearly 32 years, was diagnosed with ALS in 2019. ALS not only affects the person with the disease but also their family caregivers. Both he and his wife can no longer serve their communities in the same way because of ALS. “The loss to society of their skills and humanity leaves holes never filled the same way again.”
Sunny Brous, a Texan with ALS, joined the call to share her perspective. Sunny was diagnosed with ALS in 2015 at the young age of 27. For Sunny, access to experimental treatments go beyond extending her own life. “Expanded access is how I can contribute to finding a cure for ALS. It takes my love for others and makes it a quantifiable action combining research and science and my dedication to the greatest good of people living with ALS.”
Sandy Morris, from Truckee, CA played a recorded message. She tearfully shared how many of her friends with ALS died waiting for access to life saving drug treatments. “Think about how much better it would be if we were able to die trying rather than die waiting,” she shared, urging the FDA to consider how their delays harm those living with ALS. “It’s not within my power to save my life—it’s within yours.”
Troy Fields from Champa Bay, FL was diagnosed with ALS in 2018. He noted how the considerations of benefits versus risk should be put in the hands of those living with ALS. “Because unless it is your own life on the line, you simply do not get it.”
Cari Meystrik from Nashville Tennessee was diagnosed with ALS in 1998 when she was only 28 years old. She has watched hundreds of friends die from this awful disease. “Would I jump to try a drug that might help me live longer of a disease that I am dying from if it has already proven to be sage and well tolerated but isn’t approved yet? Absolutely. Give me that chance.”
Jay Quinlan from New Orleans joined with his wife and caregiver Stephanie. “You have shown through your recent handling approvals for COVID vaccines that flexibility and expediting processes are possible.” He asked the FDA to use the same urgency when it comes to approving drug treatments for those living with ALS.
Tommy May from Pine Bluff, AR was diagnosed with ALS in 2005. Due to slow progressions, he was both unable to participate in clinical tries and frustrated with the lack of access to treatments. He discussed how those living with ALS are desperate for HOPE on their path. “We are not interested in the long-term. We are desperate for the here now.”
Larry Falivena of Apex, NC, has ALS caused by a mutation of the SOD1 gene. The fight for treatment access is not just for himself—it is also for his children. “I’m asking the FDA to help make sure my boys don’t have to worry about ALS.” He shares that even if the opportunity exists for just a small number of patients to have extended time on this earth that they need that chance.
On December 4th, 2018 ALS Advocate 
