Announcing the inaugural recipient of the AFBS “Strength in Action” Award.
If you scroll through social media, you might stumble upon a video of a toddler with mischief in his eyes and an infectious smile, perhaps insisting–with the vocabulary of a child twice his age– that he needs to go to Waffle House. This is Jackson. To the internet, he is a beacon of pure joy. To his mother, Kaitlyn Schara, he is a miracle that medicine once predicted wouldn’t live to see three months.
A Foundation Building Strength (AFBS) is proud to announce Kaitlyn Schara as the first-ever recipient of the AFBS “Strength in Action” Award. This honor recognizes individuals who have gone above and beyond to advocate for the Nemaline Myopathy community. Through her vulnerability and advocacy, Kaitlyn has not only educated millions about Nemaline Myopathy (NM) and been a voice for parents caring for a loved one with a rare disease, but has galvanized a movement. In 2025, her community has helped raise over $75,000 for AFBS– funding that is directly accelerating the search for treatments.
But before the viral videos and record-breaking fundraising, there was a quiet, terrifying room in a hospital where a new mother was told not to Google her son’s condition because it would frighten her even more.
The Diagnosis
Nemaline Myopathy is a rare neuromuscular disorder characterized by muscle weakness (hypotonia) and depressed reflexes. It affects the skeletal muscles that the body uses for movement, but critically, it also affects the muscles used for breathing and swallowing.
For Kaitlyn and her husband, John, the journey began in confusion. Despite a mostly quiet pregnancy, at 32 weeks Kaitlyn began to experience rapid weight gain and severe back pain. Despite bringing her concerns to her healthcare providers, her fears were dismissed and she was told all was normal and to expect a “big baby.” The reality of labor was starkly different from the experience Kaitlyn and her husband, John, were prepared for.
“The labor was terrible. His heart rate kept dropping. When they broke my water, they estimated that I had over 10lbs of fluid that came out. This was the reason for the fast weight gain. He was not swallowing in the womb as he should have been.”
“As soon as he was born there were no cries. He was purple,” Kaitlyn recalls. “My mom looked at me and shook her head as immediately we knew there were many things wrong.”
Kaitlyn had instinctively sensed the danger beforehand, telling John, “If anything [goes] wrong, go with the baby.” When Jackson was whisked away, the silence in the room was deafening. “They took him away immediately and I was left alone,” she says. “Everything went wrong.”
For weeks, the Schara family lived in a state of diagnostic limbo. Doctors guessed at syndromes and labeled harmless inherited features as abnormalities. It wasn’t until Jackson was six weeks old, after Whole Genome Sequencing (WGS), that they received the answer: ACTA1-related Nemaline Myopathy.
The prognosis given was devastating. “We were told that Jackson would not live past three months,” Kaitlyn says. “We were told that he had NM at the most severe level. If he did live, we were told he would be unable to speak, eat by mouth, breathe on his own, or move.”
Defying the Odds
Two years later, Jackson Schara is rewriting that narrative.
The boy who wasn’t supposed to speak has the advanced verbal skills of a preschooler. The boy who wasn’t supposed to move stood on his own for an extended period just before a recent hip surgery.
“Over time, we know that [the prognosis they originally gave us] is not true,” Kaitlyn asserts. “He needs no breathing support. He eats–and drinks now–many things by mouth and by G-tube.”
It is this resilience that Kaitlyn began to document online. What started as an outlet for a grieving mother transformed into a window into the life of a rare disease family. She showed the therapy sessions, the medical equipment, and the relentless work required for milestones other families might take for granted.
Then came the Waffle House video.
This spring, Kaitlyn posted a clip of Jackson demanding a trip to his favorite restaurant. For a child who receives most of his nutrition via a feeding tube (G-tube) due to difficulties chewing and swallowing, finding a food he loved was monumental.
“When Jackson really began eating by mouth, Waffle House was something… that Jackson just LOVED,” Kaitlyn explains. “He’d always go for the jelly and, of course, waffles. This meant hope for the possibility that he may one day wean from his G-tube.”
The world fell in love. They saw his determination (“He works HARD,” Kaitlyn emphasizes), his humor, and his “sunshine.” But Kaitlyn is careful to ensure that her platform educates as much as it entertains.
The Reality Behind the Screen
“I think it’s easy to think that our lives look easy through Jackson’s videos,” Kaitlyn admits. “I wish people knew that what they see isn’t everything.”
Behind the 60-second clips of joy is a grueling schedule of “constant therapy.” Daily life involves timed G-tube feeds, strict isolation to avoid respiratory illnesses that could be fatal, and navigating a world not built for them.
“When I pictured motherhood… I did not picture that my home would be filled with medical equipment,” she says. “I did not picture my child being unable to walk while his peers are running around him. I didn’t know he would have been put under anesthesia five times by age two.”
Kaitlyn’s advocacy shines a light on these “lowest lows” just as brightly as the “highest highs,” teaching the public that a diagnosis of NM requires grieving the life you imagined while fighting for the life you have.
Strength in Action
Kaitlyn’s refusal to accept the status quo is why she is A Foundation Building Strength’s “Strength in Action” honoree. She understands that awareness is only the first step– action is the solution.
“To have a foundation [AFBS] dedicated to advancing research for NM… means so much to me,” Kaitlyn says. “Finding treatments would drastically improve Jackson’s ability to do everything that he works so hard to do now- his body wouldn’t have to work near as hard to do what those not affected take for granted.”
By encouraging her followers to support A Foundation Building Strength, she’s ensured that AFBS can fund more scientists, launch more projects, and move closer to clinical trials. It brings us closer to a world where Jackson–and others like him–don’t have to fight so hard in their day-to-day.
“I hope Jackson can show that Nemaline Myopathy has not taken the joy out of life,” Kaitlyn reflects. “It has made life harder, but not impossible.”
Congratulations to Kaitlyn Schara, a mother, advocate, and force of nature, for receiving the AFBS Strength in Action Award.
You can learn more about Kaitlyn, John, Jackson, & Jackson’s baby brother Will on TikTok, Facebook, Instagram!
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.
Support AFBS’s Work: 100% of your monetary gift will support critical research.
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I came upon this many many months ago. The progress this little guy has made is unbelievable. He tries so hard and he is fighting the odds and doing a great job. Let’s not forget.Mom works extremely hard at this. Dad is also great but he does have to go to work so he helps too. I watch him every day and see the progress and it makes me smile that he’s doing so wonderfully. Many blessings to the family.
Congratulations on your award you and your family are amazing for bringing awareness to Nemaline myopathy and Jackson is a credit to you and John I love watching his videos and see pictures of Jackson and Will it adorable
I look for Jackson every day on my Facebook feed. He is unusually advanced verbally for his age, possesses true grit and has the sense of humor (that side eye!) of a seasoned talk show host. His parents are incredible too. I know the work is unending and relentless but they step up to the plate every day. I have endless admiration for this little man…❤️❤️❤️
Thank you for enlightening us all about this disease. I had no idea about it. Kaitlyn you are a force I have so much admiration for you the strength in your dedication to tackle this disease to make sure Jackson has opportunity and mobility. What a beautiful family you are, sharing your love. Congratulations
Kaitlyn, this Strength in Action award is so deserved. Not only have you educated myself, a Pediatric RN, but the entire world who has followed your story. You are truly a force! Your determination, your patience, your advocacy for beautiful Jackson is what a Mother does. And Jackson, I simply love you. I know with your determination and perseverance you will rule the world. Merry Christmas to a most wonderful family. Thank you for letting us in😘
This award is SO deserved! I’ve been following Jackson on FB for a while now and the tremendous progress he has made is due to the dedication and commitment from his loving Mommy (and Dad too!). I am floored by her resilience and determination to give Jackson every opportunity to thrive despite his diagnosis. A child who was given 3 months to live, now moving around in his walker, standing during therapy, and talking so advanced for his age that I am often left surprised with what he says and does. He is a character, and thrives on making people laugh. Kaitlyn, I know you make it look easy, but I know everyday life is sure to wear you down a bit. Please know that you are an amazing, amazing mother and that Jackson is blessed to have you. Don’t ever be afraid to ask for help. All moms sometimes need to. Sending you prayers and strength and may God bless over all of you.
Congratulations Kaitlyn! As a mom of three who lost a son to another MND, ALS. I get it. You, John and Jackson make a formidable team. I know we only get to see a small portion of your life with this disease but you are brave and compassionate and Jackson is our hero. I am glad that you are getting the word out and recognition that you deserve. Keep moving forward!
Tears of joy for the Schara family, especially Kaitlyn, who is beyond deserving for this award. I just found this little child a few weeks ago, but I have fallen head over heels in love with him. He is truly a miracle, aided by these amazing parents. I pray for Jackson every morning and night and will continue to do so.