Introducing Dr. Kristine Cunniff, Our 2026 Strength in Action Honoree
The medical community often speaks of “the clinical gaze”: the objective, trained eye of a physician scanning for patterns and pathologies. But for Dr. Kristine (Kris) Cunniff, a board-certified internist in Rhode Island, that gaze was fundamentally shifted the day her granddaughter, Lexi, was born. It was a moment where professional expertise collided with a grandmother’s intuition, beginning a journey that would transform a physician into a determined advocate for a disease even her specialist colleagues had never heard of.
A Foundation Building Strength is honored to name Dr. Kristine Cunniff as this year’s recipient of the “Strength in Action” Award. This honor recognizes individuals who have demonstrated extraordinary dedication to advancing awareness of Nemaline Myopathy.
A Medical Mystery
Nemaline Myopathy (NM) is a rare congenital neuromuscular disorder characterized by muscle weakness, which can severely impact a person’s ability to move, speak, swallow, eat and breathe. In Lexi’s case, the symptoms were subtle but undeniable to Kris’s trained eyes.
“When Lexi was born, I knew something was off because she definitely had low tone,” Kris recalls. “She would drag her head… like she was carrying a bowling ball. She just couldn’t lift it up”. For 18 months, Lexi missed developmental milestones, moving through physical therapy without a clear cause. It wasn’t until genetic testing revealed a mutation in the NEB gene that the family finally had a name for what was causing Lexi’s symptoms.
Educating the Educators
The diagnosis brought a second shock: the realization that the medical infrastructure meant to support Lexi was largely unaware of her condition. “I was a board-certified internist, my neurologist friend hadn’t [heard of it], and my pediatrician that does inpatient medicine hadn’t,” Kris says. “This thing really is quite rare, and it’s hard to diagnose something that you’ve never heard of”.
Kris refused to let the rarity of NM be an excuse for medical obscurity. She knew that early diagnosis and intervention is shown to lead to better outcomes for NM affected children. Stepping far outside her comfort zone, she began presenting to groups of primary care physicians, family medicine practitioners, and internists. Armed with slide decks from A Foundation Building Strength (AFBS) and coaching from her mother, a former speech professor, Kris has introduced the nuances of NM to nearly 200 physicians. Her goal was simple but profound: “I wanted to educate my peers so if any of them come across it, they will have heard of it at least. So we have a better chance of diagnosing”.
The Marathon of Hope
In April 2024, Kris received news that would test her resolve in a new way: after filling out an application on something of a whim, she was selected to run the iconic New York City Marathon as part of Team AFBS to raise funds for Nemaline Myopathy research. “I filled it out, never expecting to get picked,” Kris admits, noting she hadn’t run in ten years and was training at 60 years old. “I said, ‘well, I better get cracking!’”
Over seven months of grueling training, Kris found her “why” whenever she hit a mental or physical wall. “None of these [Nemaline Myopathy affected] kids want to go to PT three times a week… none of them want to be in the hospital on Halloween. Having that ‘why’ was what drives many people over the finish line, and I was no exception”.
On race day, the emotional weight of the journey culminated at Mile 21. Taking a right onto Alexander Street, an especially meaningful meet point that shares a name with her late son for whom Lexi is named, Kris met members of her family for a full-circle moment of healing and determination. She crossed the finish line having raised over $13,000 for NM research, proving that “Strength in Action” is as much about physical endurance as it is about emotional resilience.
A Legacy of Strength
While Lexi now navigates her world with a “fast waddle” and her own determined gait, the reality of NM remains a daily presence. For Kris, the award is a testament to the community and support she found when her world was feeling most isolating. “It feels so frustrating to not have any kind of treatment available to her… [but] to know that people are out there looking for a way to turn this around, it could just make such a difference,” she says.
For Kris’s daughter, Casey, her mother’s impact goes far beyond the clinical or the charitable.
“My mom has always been the most incredible support for Lexi, and we are so proud of her for taking on advocacy for the entire NM community,” Casey says. “She has extensively researched, represented, and educated as much as possible for not just her granddaughter, but all of the siblings and caretakers responsible for Lexi”.
Casey notes that Kris’s research hasn’t stopped at medical journals; it extends to ensuring Lexi lives the most vibrant life possible. “Not only has my mom researched the medical aspects, also any adaptive options for normalizing Lexi’s life experience as such a young child,” Casey explains. “This includes adaptive sports, activities, and ways to encourage Lexi’s independence. I cannot imagine a greater advocate and supporter for our family and community. I am beyond proud to call her my mother and to have her in our lives”.
For her commitment to raising awareness for Nemaline Myopathy and her fundraising efforts to help advance research to find effective treatments, we’re proud to name Dr. Kristine Cunniff our 2026 Strength in Action Recipient!
Make a Difference… One Share at a Time!
Kris is one of the featured fundraisers for our 2026 NM Awareness Share-A-Thon taking place May 18th through May 31st. You can participate in the Share-A-Thon to help spread awareness about Nemaline Myopathy while raising funds for critical NM research!
Helping is quick and easy to participate at any level you feel comfortable with, whether you’re fundraising, donating, or sharing:
- Support a Fundraiser: Make a direct donation to Kris’s fundraising page to help fuel research into finding effective treatments for NM.
- Start Your Own Page: Create your own personal fundraising page to share with friends and family to spread the word!
- Share, Share, Share: Follow A Foundation Building Strength on Facebook and Instagram. We’ll be posting awareness content all through the Share-A-Thon—just hit the share button to help us raise global awareness.
- Unlock the $25,000 Match: When our community reaches our collective goal of 500 total social media shares by May 31st, it triggers a massive $25,000 matching gift that will DOUBLE the impact of our research funding!
Together, we’re building strength.
A Foundation Building Strength (AFBS) is a nonprofit organization dedicated to accelerating the development of treatments for Nemaline Myopathy. Our mission is to fund cutting-edge research to find effective treatments while providing resources and a strong community for families affected by NM. We are proud to be at the forefront of driving Nemaline Myopathy research breakthroughs forward through collaborations with research teams across the globe.
Donate to AFBS: Your monetary gift will support critical research and provide vital resources for NM families.
Stay Connected: Sign up for our email list to receive the latest updates from AFBS and learn more about NM research. Are you an individual or a caregiver of an individual affected by NM? Fill out the AFBS Contact Survey to be connected with valuable resources, support, and research opportunities! Visit our “Get Involved” page for even more ways to connect!