Power of Personal Storytelling in ALS Advocacy

Sharing here a piece I’m proud of — thank you to Beth for your willingness to be interviewed, for your advocacy, and to all storytellers and advocates pushing for ALS funding. xoSummer

INTERVIEW BY SUMMER STARLING

Beth Starling has spent a lifetime telling stories. When her son Grayson was diagnosed with ALS, she found herself telling the hardest one of all to the people who hold the purse strings for research.

This conversation is close to home. I sat down with my mom to interview her about her recent activism for the ACT for ALS Reauthorization Act. This spring, Beth joined an advocacy push aimed at the office of Representative Chuck Edwards, who represents North Carolina’s 11th Congressional District, to urge renewed federal funding for ACT for ALS. She drew on her personal story about her son, Grayson Starling, living with ALS.

ACT for ALS — the Accelerating Access to Critical Therapies for ALS Act — was signed into law in December 2021 with broad bipartisan support. It remains the single largest source of federal ALS research funding, authorizing roughly $500 million over five years, and it has channeled more than $125 million to help some 750 people with ALS access investigational treatments outside of clinical trials. Key provisions are now set to lapse, and the law is up for reauthorization for the coming fiscal year (FY2027).

What follows is Beth’s account of her ALS advocacy efforts with Edwards and why this funding must happen. The interview has been condensed and edited for clarity.

Let’s jump in. What’s at stake in this reauthorization moment for ACT for ALS?

What’s at stake for us and our family is ALS research continuing. The funding is set to be renewed in September. I volunteered for this so legislators can get a more personal view from their own constituents of what ALS families in their district are having to deal with.

Which of our lawmakers or their aides did you meet with?

Chuck Edwards. He’s not popular in my circles, he’s very conservative, although I see him trying to generate some good will in the community.

You’re known in our family as a pretty legendary storyteller. What was it like to tell such a personal story to a legislative team?

It felt empowering. Because the story needs to be told. It felt empowering to actually be doing something to promote the research and the funding. I auditioned for it, in a way, by joining a training call ahead of time. They selected three of us for the actual meeting, because they didn’t want to overwhelm the legislative reps on the video call. They selected me to go first. I didn’t prepare much; I just told our story. I didn’t filter anything — except I didn’t use any curse words when I talked about how horrible this disease is.

I tried to interject some humor, too, so they could get a flavor for Grayson’s adventurous spirit. I told them he’s my “tumbleweed kid,” how he’d do anything once, just to have the experience. I told them about how [Grayson] got serious about graduate school, and it was in his first year of graduate school that he started having symptoms. He was able to finish, but he’s never been able to work with his degree, because by the time he finished, he was already symptomatic. Then I talked about what his life is like now — the things he can’t do, in such sharp contrast to that wonderful, exciting, energetic life he’d lived before all of this.

Did you feel a moment where your audience was resonating with your story?

No, because the aides on the call didn’t speak until the end of the presentations. But when he did, he said, “Representative Edwards is on it. He’s agreed to be a co-sponsor, he’s agreed to vote for the bill.” And he said, “I think you’re going to find there’s huge bipartisan support for this. I don’t know one legislator who’s not going to vote for it.” He thanked us profusely and said, “We’re on it. There will be no dissension in this office.”

A win to hear Edwards is supportive. Would it have been different for you if you’d known he was supportive before you told the story?

I’d have said the same things. What we were trying to do was give this fella a bird’s-eye view so he could educate Representative Edwards. We just didn’t realize they were already on board. But it was very gratifying — it had been such an emotional meeting, and at the end, for him to speak so positively about the bill.

What would you say to someone considering this kind of direct storytelling advocacy?

It’s a hard thing to do, but I think it’s a necessary thing. I would say there’s not really a way to prepare yourself emotionally for this type of advocacy — just like we couldn’t prepare ourselves as a family for getting this kind of devastating news. As I talked about the research funding, I emphasized the imperative need for it to continue. And then said, ‘Just listen to these families. There’s no cure.’

It’s just so urgent. And I know you’re no stranger to political activism.

I’ve been really politically active recently with the Democrats in Buncombe County (NC). Before that, I was big into Planned Parenthood. And in college, believe it or not, since I have three children!, I was in Zero Population Growth and in campaigns for reproductive rights and freedom of choice. Roe v. Wade became law when I was a college senior. Auburn University was a conservative school at that time, but we had a cadre of folks who felt passionately about certain causes and led through activism. So despite the conservative roots, we have our groups of people who defy.

In the South we call it “good trouble”! Do you see partisanship creeping into ALS conversations?

The people I’ve talked to don’t mention partisanship at all. They just talk about the research and the need for research dollars. Of course, with everything going on in the country right now, we’ve been surprised and upended by so many things. Medicaid cutbacks are in the works, and that could affect us as a family. But I don’t hear much bipartisan disagreement about this anywhere.

What would you say to a lawmaker who doesn’t see ALS as their issue?

If you had a legislator who wasn’t on board, my hope would be that they’d at least come to the table to get informed, educated, and develop empathy for families having to deal with this. It’s one of the worst diseases you can get. ALS affects people of all ages, and it affects families in such a profound way: the emotional, the financial, the life-changing ways a family’s course can be altered. The power is in people actually telling their stories. Hearing from constituents who are dealing with ALS will hopefully give lawmakers motivation to at least look into it further.

This kind of advocacy can be exhausting and ALS families already live with grief. Where does your energy for this come from?

Think about all the change efforts in our nation that have come from personal experience, like Mothers Against Drunk Driving. When you’re personally impacted by something as devastating as ALS, you have choices: you can either just lie down and feel hopeless, or you can get up and do something. That’s the only way I can deal with my angst — what else can I do with all the anxiety and upset?

Because even if ALS research doesn’t come fast enough for us — we’ll still be doing good work for the future.

Beth Starling is a lifelong storyteller, political activist, and retired marriage and family therapist in Asheville, North Carolina, and the mother of Grayson, who is living with ALS.

Summer Starling is a social scientist and ALS research ambassador, and Grayson’s big sister. She lives with her husband and two energetic kids on three acres in Durham, North Carolina.

Learn more about the reauthorization of ACT for ALS at iamals.org and als.org.