On Friday March 7, 2025, I had the privilege of speaking in defense of the research at NIH that benefits individuals with Down syndrome. Below is a copy of my speech. These last several months have been full of challenges and hardship for our community. I was honored to have the opportunity to be with people that share a passion for making the lives of people with disabilities better.
I also had the privilege of watching several politicians and community leaders voice their frustration with the current political climate. We must come together and defend our constitution and our most vulnerable citizens. It was an honor to be advocating for the researchers who work tirelessly for families like ours.
Protest Rally Remarks – Defending NIH Research and Funding, Shannon Striner
I stand here today not just as an advocate, but as a mother—one of the millions of parents who have watched in awe as science and medical research have transformed our children’s futures. And today, I’m standing here in absolute outrage.
I have two daughters, 12 year-old Haley is a curious, smart, beautiful soul who thinks her mother is annoying right now right on cue, and 8 year old Sienna is a silly, determined, Bluey loving cheerleader who also happens to have an extra copy of her 21st chromosome, known as Trisomy 21 or Down syndrome.
The federal government’s cuts to NIH research are an attack—an attack on science, an attack on progress, and an attack on families like mine. Because when you cut funding for medical research, you aren’t cutting abstract numbers on a spreadsheet—you are cutting into the very lifeline that has given my daughter the future she deserves.
On the day Sienna was born, we learned of her Down syndrome diagnosis. I had not been connected to anyone with Down syndrome before her arrival into our family’s story. I will never forget the fear that consumed me as a Mother. I did what you aren’t supposed to do and I googled Down syndrome. I remember the first words that hit me – life span, heart defects, autoimmune conditions, early onset Alzheimer’s. When a typical baby is born, we don’t think about every disease that they could be diagnosed with, but here I was with a baby that wasn’t even 24 hours old thinking about Alzheimer’s disease. When she was born, she was one of those babies with a heart defect, an Atrial Septal Defect—to be exact. It’s a condition that affects nearly half of all babies with Down syndrome. But because of decades of NIH-funded research, we had answers. We had options. And today, she is thriving.
Let’s be clear: this research has added years—decades—to her life. Just a generation ago, people with Down syndrome weren’t expected to live past their 20s. Today, because of NIH-funded breakthroughs in cardiology, immunology, and countless other fields, my daughter has a chance at a full life. The reason another Mom will google Down syndrome and see the projected lifespan and treatment options for comorbidities is thanks to science and people like all of you.
But now? Now, they want to take that away.
We are in the midst of groundbreaking research into the link between Down syndrome and Alzheimer’s disease. And let me tell you—this isn’t some far-off issue for my family. Every parent of a child with Down syndrome lives with the terrifying reality that our children are at a drastically increased risk of early-onset Alzheimer’s. Many face cognitive decline in their 40s. Some, even earlier. Imagine looking at your child—your eight-year-old—knowing there is a ticking clock over her head. And now, they are pulling the funding that could stop it.
Every moment we lose to political games, every dollar taken from this research, is another moment stolen from my daughter’s future. It is another piece of hope ripped away from families like mine.
And what makes this even more infuriating is that here, in Pennsylvania, we know what’s possible when we invest in medical research.
Pittsburgh has become the epicenter of groundbreaking advances in medicine and science. We are home to world-renowned institutions where researchers have led the way. Families come to Pennsylvania because this state has been a beacon of progress, a place where children with disabilities have a real shot at a better life.
That didn’t happen by accident. It happened because of leaders like Senator Bob Casey, who fought tirelessly to expand disability rights and protect Medicaid. Boy, do I miss him right now. It happened because of trailblazing mom advocates, who refused to accept the status quo and demanded better for their children. Their work made Pennsylvania one of the best states in the country to raise a child with a disability.
And now? Now, they want to undo all of it.
But I refuse to let their work go unrecognized, just as I refuse to let the brilliant minds behind these medical advancements be ignored. One of my best friends, Dr. Annie Cohen, has dedicated her life’s work to advancing Alzheimer’s research so that Sienna—and millions of others—will have a chance at treatment someday. She and so many others pour their hearts and minds into this work, often in a world that is thankless and underfunded. Today, I want to commend them. I want to say, we see you. We see the scientists, the researchers, the doctors, the professionals who have spent countless hours chasing breakthroughs that will save lives.
Your work matters. It matters to my family, to Sienna, and to every person counting on science to give them a future.
Let’s not pretend these cuts are happening in a vacuum. This is part of an all-out assault on the disability community. First, they came for our children’s education. Then, they came for Medicaid, threatening the lifeline that keeps so many people with disabilities alive. And now, they’re coming for the science that gives them a future.
I am here today as a mother begging—demanding—that this government stop playing politics with our children’s lives, with my daughter’s life. Stop treating medical research as expendable when it is the only thing standing between life and death for millions.
Science is hope. NIH is hope. And I will not let them take that hope away from my daughter.
Not today. Not ever. Thank you.
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