Thursday, May 7, 2026

Thursday, May 7, 2026

Today’s post was written by Nikki

May is ALS Awareness Month. It is also budget season on Capitol Hill, which made this an especially meaningful time for the ALS delegation to gather in Washington, DC. Representatives from ALS organizations across the country came together to advocate for legislation that supports ALS research, treatments, expanded care access, and continued federal and Medicare funding.

This year, there were nine small groups of ALS United representatives participating in more than 50 meetings with Congressional Offices. I had the incredible honor of joining ALS United Illinois, Indiana, and Missouri for their meetings on the Hill to help support the conversation and advocate for continued Congressional support.

Our group was led by Julie Sharpe, CEO of ALS United, and included Tim and Stephanie Werner and Connie Simpson. Tim, who is 42 today, has been living with ALS since 2018, and Stephanie (his wife) is his primary caregiver. Connie serves as the Care Services Director for the state of Indiana (she is Tim and Steph’s “Angel Peggy” to draw a parallel) and is an invaluable source of support for families navigating this disease.

I have lived in DC for 19 years, and despite being around the city for nearly two decades, I had never been inside the congressional office buildings. Walking those halls and participating in these meetings was truly an honor.

One thing that stood out was how bipartisan these conversations were. My dad and I (respectfully) argued about politics for years. Our meetings yesterday were with both Republicans and Democrats, Senators and Representatives alike. The discussions were thoughtful, respectful, occasionally emotional, and hopefully impactful. ALS does not discriminate, and the urgency to support patients, caregivers, and research is something that reaches far beyond politics.

Meanwhile, on the other side of the National Mall, Katie Wonnenberg volunteered with the organization I AM ALS to help place 6,000 flags overlooking the Washington Monument. Each flag represents one of the 6,000 people currently living with ALS in the United States. Zack and I are heading there this morning for the ceremony, and I cannot wait to see the flags honoring Grandy and Pete Saunders (pictures to come).

What’s next? I encourage everyone to take a few minutes to contact your Senators and Representatives and ask them to co-sponsor and support the proposed ALS legislation. All the offices told us how much outreach from constituents matters (YOU! YOUR VOICE MATTERS!). Here is the proposed legislation: • ACT for ALS Reauthorization Act (H.R. 8205) • ALS Better Care Act (H.R. 7336 / S. 3763)

Advocacy matters. Awareness matters. And continued momentum is critical for families facing this disease! F ALS!