NF Stories that Inspire

Jace’s Journey: From the Ice Rink to Advocacy 

Watching your child step onto the ice for the first time is a moment filled with pride and a little bit of nerves. For our son, Jace, it was so much more. That day marked the start of a journey not just as a hockey player, but as a kid finding his confidence, community, and voice. Today, Jace is not only thriving in school and hockey but also making a difference through his adventures with NF Northeast and our advocacy work as a family.  

From Hockey Beginnings to Finding His Place 

Jace’s journey in hockey began with Sean James from the Mercyhurst Lakers Men’s Hockey Team. When Jace started skating with Sean two years ago, he didn’t even know how to skate. With Sean’s mentorship and encouragement, Jace’s skills improved dramatically, and he’s now doing amazing on the ice. Sean has been more than a mentor; he’s like a big brother to Jace, providing guidance, support, and inspiration every step of the way. Today, Jace plays for a team called the Mercyhurst Lake Monsters, where he continues to thrive as a hockey player. Being part of the Mercyhurst Lake Monsters team has provided Jace with a sense of belonging and support. The camaraderie and encouragement from his teammates and coaches have been invaluable in helping him feel included and valued. 

Discovering Team Impact 

We were introduced to Team Impact at the Steps2Cure NF Walk in Buffalo, NY, where Maggie Burns from Team Impact introduced herself to us and started our Team Impact journey. Team Impact is a nonprofit organization that connects children facing serious or chronic illnesses with college athletic teams. When Jace was paired with the Mercyhurst Lakers Men’s Hockey Team, it was a turning point. The players and coaches became mentors, friends, and an extended family for him. Sean James, in particular, has been an amazing influence, helping Jace build his confidence and love for the sport. Watching Jace’s confidence blossom as he found his place within this team has been nothing short of inspiring. It’s a reminder of how much strength can come from a supportive community. 

Advocacy: Turning Challenges into Change 

Our family’s advocacy journey began as a natural extension of our experiences navigating life with Jace’s health challenges. Sharing our story felt like the right thing to do, not just for us but for other families who might be facing similar struggles. We’ve been fortunate to work with organizations like NF Northeast to raise awareness about the power of community and inclusion for kids like Jace.  

Advocacy trips are a mix of heartfelt conversations and impactful action. We’ve had the opportunity to meet with legislators, share Jace’s story, and highlight the incredible work these programs do. It’s empowering to know that our voice is part of a larger movement, pushing for changes that can positively impact so many lives. 

The Emotional Reward 

Being involved in advocacy has been humbling and fulfilling. Seeing Jace’s excitement when he’s part of these efforts reminds us why we do this. He’s not just our son; he’s a symbol of resilience and giving kids a platform to shine. Every step in his journey feels like a way to turn life’s challenges into something meaningful. 

Looking Ahead 

As Jace continues to grow and thrive, we’re committed to staying the course—on the ice, in the classroom, and in the advocacy world. He’s proof that with the right support, kids can overcome so much and inspire others along the way. 

We’re grateful for everyone who has been a part of Jace’s story so far and excited for what’s to come. Whether he is scoring goals or breaking down barriers, Jace reminds us daily of the strength that comes from community, determination, and love. 

-Natalie Keeley 

Mother of Jace Keeley, age 7, patient with NF1  

First Steps for Baby and Parents

Around the time that our child was learning to walk, we were also taking our first steps as parents in learning about Neurofibromatosis. Our pediatrician noticed our daughter’s gorgeous pattern of cafe-au-lait birthmarks and freckles, and gently instructed us to make an appointment in Boston with an NF specialist for an evaluation, leading to a diagnosis. As parents, we felt like toddlers, stumbling through an unknown world, learning a great deal in a short time period and searching for support when we felt like falling down. Connecting with NF Northeast allowed us to access the resources we needed. Luckily, our child did not have any serious symptoms of NF-1 and we were given some reassurances that we were doing all of the right things by keeping up with regular screenings. We had learned to walk, and no one was asking us to run yet.

Wishing for Early Intervention

As a trained special educator and school psychologist, I know the power of early intervention and prevention for many children with disabilities. Unfortunately, Neurofibromatosis isn’t like other kinds of developmental delays or conditions. Some aspects of NF can’t be prevented and you just have to wait and see. Still, we wanted to pursue early intervention if possible - it can’t hurt to get some extra help with key developmental milestones, right? Our NF doctor told us that because our toddler was not delayed in any areas, she would not qualify for formal Early Intervention (EI) services. However, through my professional connections, I got a second opinion from an EI program director in my community. “That’s not true,” she said. “Neurofibromatosis is on the Diagnosed Conditions List here in Massachusetts, so if your child has a diagnosis of NF-1, then she automatically qualifies for early intervention services, even if she would not have otherwise been eligible due to her lack of developmental delays.” For the next 12-18 months, we participated in occupational therapy, and parent-child play groups. Our daughter then received speech therapy for some articulation delays that emerged around age 3. Would she have been fine without any of these services? Probably. But we felt like we were taking action and not just watching or waiting for future problems.

Reflections on Advocacy

Now, at age 7, our daughter still receives speech therapy, but continues to be healthy with no major medical issues resulting from NF. It still feels like there’s not much we can do for prevention. Soon, it will be time for her triennial special education re-evaluation. If she’s no longer eligible for speech therapy, is that a positive sign of progress, or should we try to advocate for a continued IEP, so that we feel like we are being proactive and doing all that we can? With about 50% of children with NF likely to have learning or attention problems, it’s hard to just let go and relax, even with a child who is succeeding in school and healthy.

Balancing Education and Coping

One strategy that works for me is to take breaks from diving deeply into learning and thinking about NF. In the future, if our daughter develops new complications and medical needs, NF will become a bigger part of our daily lives. On one hand, that makes the present day a perfect time to read about the latest NF research, attend webinars and symposiums, and educate ourselves proactively while we are not in crisis. On the other hand, it’s also important to take time away from the heaviness of this topic and put it aside during this phase of our lives when we can afford to do so. Months can go by in between our screening appointments when we don’t have to think much about NF at all. My husband and I gravitate towards two different approaches to this, and they usually complement each other. When I spend long amounts of time on NF research and send myself into a state of high anxiety, he encourages me to take a break. He has good boundaries and reminds me to protect my sanity, and his, by stepping away from this topic. When we have an appointment to prepare for, or decisions to make, I’ll try to bring the issues to him at the right time and offer some clear questions for us to discuss, without spiraling us into a panic. Over time, we are improving our balance with the need to educate ourselves and the need to practice self-care and coping as a team.

Strengthening the Community and Resources

Organizations like NF Northeast provide families with layers of guidance, through multiple modalities. When we want to explore the latest research and access reliable, accurate medical information, we know that we can start with their website and materials as a trustworthy source. When families need social and emotional support, NF Northeast connects them with other families through mentoring, social events, and online discussion groups. Our family has benefited from all of these services as our needs change. We are coming forward this year and taking a step towards more involvement by participating in the 2025 Steps2Cure NF Walk. 

In July 2024, our courageous Little Sophia faced a diagnosis of neurofibromatosis (NF1), a genetic disorder that presents numerous challenges, including hydrocephalus and a tumor on her optic nerves, requiring a targeted oral chemotherapy treatment called a MEK inhibitor. Undaunted by the tumor's complex location, Sophia's resilience and determination have been a beacon of hope. Following a successful surgery to alleviate fluid buildup on her brain, Sophia has marked a significant first milestone on her journey. Sophia inspires us all with hope, courage, and optimism, as we continue to support her through this challenge. Sophia's unwavering spirit is a powerful reminder that adversity can be overcome with strength and determination. 

Written by Heather Thomas (mother) 

Our son Joshua is such a free spirit! Josh is 6 years old and was diagnosed with NF type 1 at the age of four, a condition that causes tumors to form on the nerve tissues, brain, and spine when his pediatrician noticed he had an overwhelming amount of café au lait spots on his body. Our world stopped right then and there, like most people we had never even heard of NF before. However, after many appointments and consultations things about Josh began to fall into place and make more sense. He wore a helmet as a baby, needed early intervention services, and had trouble with speech. Currently a large part of Joshua’s NF impacts his behavior and learning. 

Josh has been working very hard in social settings and in school and has endured a lot in his life but his excitement for life brings laughs where ever he goes. Even though he will continue to have struggles, and the complexities of NF are very overwhelming because there are so many unknowns and everyone’s journey is different, we are confident his bright light will help him through. 

Josh loves watching football with his family, playing with his cousins, and creating art. When he grows up he wants to be a scientist and work at Disney’s Animal Kingdom taking care of the animals. The world truly needs more Joshua’s and we couldn’t be more proud of him!  

I am walking in the Step2Cure NF 2025 in Hartford because this cause is very dear to my heart.  I inherited NF2 from my dad along with 3 out of 4 siblings.   My dad was not diagnosed at the time when my sister had severe back pain as a teenager.   They diagnosed it as a tumor at the time we did not know about NF2 in the family.   

Years  later my dad found out about this genetic disorder from his sister who also had it.  My dad eventually lost all his hearing and the 3 of us started to loose ours in our early 20s.  

We recently found out my niece (Kayla) inherited NF2 from her mom (my sister) and has both acoustic and spinal tumors.   

It is very important to me and my family that a cure will someday soon be available to my niece as well as thousands of other young couples beginning to have families of their own.  A cure for future generations so that no other parents will need worry of passing it on to their offspring without a cure available. 

I am dedicating joining this walk to my niece Kayla who was recently diagnosed. That she receives the care she deserves as well as her future children if needed by finding a cure soon!! 

I am participating in Steps2Cure NF to raise awareness and support for those affected by neurofibromatosis (NF)—a genetic disorder that causes tumors to grow on nerves throughout the body. The funds raised will directly support NF Northeast’s mission, providing critical patient support programs, advocacy efforts, and funding for groundbreaking research. This work brings hope and help to individuals and families impacted by NF. 

Every step I take moves us closer to better treatments, increased awareness, and a brighter future—thank you for your support! 

NF presents differently in every individual. My grandmother had NF1, and both my mother and I also have NF1. My grandmother struggled with a significant number of neurofibromas and other neurological complications related to the disorder. 

In 2022, I was diagnosed with an NF-related tumor on my right hypoglossal nerve, one of the cranial nerves in the brainstem. Doctors believe this slow-growing tumor has been present since birth. This type of tumor is extremely rare, even among NF1 patients. Initially, I sought the expertise of top neurosurgeons in Philadelphia, only to be told that surgery was too risky due to the tumor’s location. Each specialist recommended alternative treatments such as radiation, gamma knife, or chemotherapy—options that are not viable for NF patients due to the increased risk of the tumor becoming malignant. 

Determined to find the best care, I traveled to Vanderbilt University to consult one of the leading neurosurgeons in the country with experience in this tumor type. Unfortunately, this also did not lead to the right treatment plan. 

Thankfully, in 2023, I found a neurosurgeon who specializes in NF and has experience with tumors like mine. Since then, my tumor has been monitored annually, with the goal of removing it surgically when necessary. 

At my 2025 annual appointment, my care team determined that my tumor had grown significantly, and it was time for surgery. This summer, I will undergo a procedure to remove as much of the tumor as possible. Potential complications include damage to my lower cranial nerves, which could affect swallowing, speech, facial sensation, articulation, hearing, and shoulder strength. While these risks are daunting, I am grateful to have found a medical team with the expertise to provide the best possible care for my unique needs as an NF patient. 

NF has impacted my life in many ways, including hypermobility syndrome, chronic pain, neurodivergence, scoliosis, and other bone-related issues, all of which affect my daily experience. However, my tumor diagnosis has been the most challenging aspect of my journey. Despite its difficulties, it has also been a catalyst for positive change—driving me to advocate for more research, better resources, and increased awareness for those living with disorders like NF. 

NF1 affects approximately 1 in 3,000 people. To ensure that individuals like myself, my mother, my grandmother, and countless others receive the best possible treatment, care, and access to healthcare, we need more research. 

 Your support makes a difference. Together, we can push for better treatments, improved care, and ultimately, a cure for NF.