Why I Walk: Steps2Cure NF

Why I Walk is a series highlighting the stories of those participating in our 2024 Steps2Cure NF walk series! If you’d like to share who or what motivates you to walk with NF Northeast, email Lauren Gilbert at lgilbert@nfnortheast.org.

Learn more about our Steps2CureNF walk series and find a walk near you!

Find the Why I Walk stories from your Steps2CureNF location:

Cam B. – Steps2Cure NF Hartford

Cam was diagnosed with NF1 shortly after birth due to a known first-degree relative with the diagnosis and the presence of many café-au-lait spots. As his mother, I had concerns about his development within his first year of life.

Around age one, he began to receive early intervention services through the state of Connecticut for developmental delays. This started with physical therapy services due to delays in motor skills, and quickly expanded to include occupational and speech therapy services and special education services. At age 3, Cameron transitioned to the special education program within our local public school and has since received intensive special education services. Now, at the age of 10, he is thriving in our elementary school’s life skills program, where he is learning all kinds of important, functional skills that will benefit him in the future.

He is beloved by all of his peers and the adults in the school and is known as Mr. Mayor in our town. Cameron has had other challenges associated with his diagnosis, including a seizure disorder and ADHD. He is followed by multiple medical specialists. However, he never lets these challenges get him down. Cam has a radiant smile and a contagious joy for life that brightens the lives of all who meet him. We are so proud of his progress and how hard he works every day, always with a huge smile on his face.

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boy in blue shirt and grey shorts stands in front of stone building and grass with folder in hand

Jeffrey B. – Steps2Cure NF Hartford

Jeffrey was born on March 27, 2005. On November 16, 2007, at 2.5 years of age, he was definitively diagnosed with Neurofibromatosis Type 1.

Jeffrey is now 18 years old and has a mild case of NF-1, which was caused by a spontaneous mutation at conception. He has overcome many challenges throughout his life due to his diagnosis, but has always remained curious and positive.

In 2010, at an ophthalmology examination, the doctor discovered mild temporal optic nerve pallor. Based on this finding Jeffrey underwent an MRI where it was discovered that Jeffrey has optic gliomas (benign tumors) on both optic nerves. He was referred to a pediatric neurology specialist who determined that based on the small size of the optic gliomas and Jeffrey’s normal visual ability it was unlikely that these were aggressive gliomas.

Jeffrey had his second MRI in 2012. His optic gliomas appeared stable at this time, though several neurofibromas were discovered in his neck/spine region. Jeffrey was seen by a neurosurgeon but did not require surgery at that time and, thankfully, has not needed to revisit a neurosurgeon. His NF currently remains stable and manageable.

On April 22, 2013, Jeffrey’s elementary school set up a Planning and Placement Team Meeting. Jeffrey was identified as having learning difficulties in reading and writing consistent with children diagnosed with NF-1. He was categorized as Special Education: Other Health Impairment and received various support services from the school district through high school.

It was in elementary school that we discovered NF Northeast. The school nurse suggested we contact the organization. We have received advice and guidance from the staff that has helped our family understand NF a lot better. We have participated in many walks over the years and a golf tournament in Glastonbury, CT. Years ago, we sponsored two bake sales to raise money for NF Northeast.

Jeffrey has many interests. He is a lector at the Church we attend. He recently became a member of the Knights of Columbus. He volunteers for many activities and is knowledgeable about politics, religion, and chess. He decided to teach himself Polish and practices every morning. He is interested in cooking and sewing. If something sparks his interest, he puts everything he has into excelling at the task. He has worked hard to become an avid reader and his writing skills are remarkable. 

Jeffrey now attends college at Tunxis Community College and finished his first semester with a 3.8 grade point average. He is no longer receiving special accommodations although they are available to him. He was also recently accepted to his first-choice university, Franciscan University at Steubenville, Ohio where he is planning to pursue a degree in Engineering! He is an engaging, caring and considerate young man to all who know him.

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Emma E. – Steps2Cure NF Hartford

Emma is an amazing, strong, and resilient 6-year-old navigating her young life with NF1. She loves drawing, watching basketball, cheering for UConn, and listening to Taylor Swift.

We received Emma’s NF diagnosis when she was 4 years old. A neurologist noticed a significant number of café-au-lait spots on her body. Genetic testing confirmed NF1. In spite of this, we continued on with life as usual.

Two years later, in fall 2023, Emma became quite ill with something that we thought was mono. After quite a few days at Connecticut Children’s Medical Center (CCMC) in Hartford, we finally met with a neuro-oncologist and a neurosurgeon, who suggested an MRI. Imaging confirmed that she was not, in fact, sick from mono, but from an optic glioma in her brain causing hydrocephalus. The team at CCMC operated quickly to place a ventricular shunt to increase the flow of spinal fluid in her brain. In addition, the oncologist started Emma on medication specifically designed for NF1 patients whose tumors cannot be removed surgically. Sadly, her tumor caused permanent optic nerve damage, resulting in visual impairment. Emma was a brave patient through two neuro surgeries in the span of three months and diligently takes her medication twice a day, all while making her way through 1st grade and learning to read.

We are extremely grateful to our team at CCMC, who have worked with us extensively to create a path forward for Emma. We also have a support network of family and friends, who have been taking good care of all of us during these difficult times. We are excited to walk with NF Northeast in Hartford in April!

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Coleton M. – Steps2Cure NF Hartford

Why I Walk by Jodie M, Coleton’s Mom

We have three beautiful boys and Coleton is our youngest. We had never even heard of NF until shortly after Coleton was born. We first noticed café au lait spots (CALs) appearing around three months old, which prompted our first visit to the dermatologist and ophthalmologist. Aside from this, he was our very healthy, happy, beautiful boy.

At the age of seven, Coleton developed scoliosis that went from mild to severe within a few months. An MRI led to the definite diagnosis of spontaneous NF1 with findings in his brain, brain stem, and spinal cord. The diagnosis came as no surprise to us, as we had suspected NF for a very long time. Yet, we were shocked to find out that he needed immediate surgical correction of his spine. Coleton endured a 10-hour-long surgery at Connecticut Children’s Medical Center. He had a spinal fusion, bone graphs, thoracotomy, and growth rods placed. Coleton missed approximately two months of school recovering from his surgery, and he handled it like a champ. He never cried, not even when we could see that he was in horrible pain. He is the toughest kid you could ever meet.

Coleton is our hero in every way possible. 

Because of Coleton’s surgery, he is now unable to participate in any contact sports. Thankfully, he recovered in time for Little League baseball and even got to throw out the first pitch on opening day. He now sees his orthopedic surgeon every 3-4 months to have his rods lengthened, in addition to keeping many medical appointments with other specialists throughout the year. Coleton suffers from chronic headaches and neck pain as well.

Coleton gets pulled from his 4th-grade classroom to receive extra support for struggles and delays commonly associated with NF1. He is so very blessed to work with a team of teachers who truly care for him and help him reach his full potential. Cole takes both his physical and academic challenges in stride. He has a great support system, enjoys school, and loves playing with his friends at recess. 

In so many ways, Coleton is just your ordinary 9-year-old boy. He builds Legos, loves to play Minecraft and Fortnite, and has adventures with his friends. He says NF makes him tougher, stronger, and able to endure so many challenges that most others never have to face. People can’t see all his pains because they’re on the inside and he tries to be super brave. NF affects everyone uniquely—like snowflakes, no one case is exactly the same. Coleton’s wish is for a treatment or cure to help everyone with NF.

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Jermaine “JJ” W. – Steps2Cure NF Hartford

Why I Walk by Betta D, JJ’s Mom

Jermaine Jr., JJ, was born with NF. My husband also has NF. When JJ was born, he had the freckling under his armpits, and multiple café au lait spots. Other than that, he was born a healthy baby boy. Since my husband’s NF has been mild, I really didn’t understand the severity of some NF cases until JJ was born.

JJ sees eight different specialists every year in addition to a yearly MRI. He has an MRI coming up on his spine to watch a possible nerve sheath tumor. The MRIs are tough, but it’s not really the MRI itself…it’s the IVs. IVs are difficult to get in and last time they had to try several different spots to get the IV going, which is a painful experience.

Recently JJ was put on a 504 plan in school because he is behind in reading, math, and writing techniques. He is having trouble in PE and was recently evaluated for physical therapy. Between all his specialist appointments and being sick all the time, like most kids in school, JJ is falling behind with his schoolwork.

JJ has been very lucky and so far, has had a mild case. We keep up with all his appointments and know how important early detection is with the MRIs. We are praying and holding our breath until his next MRI in July on the spine.

JJ loves to attend his martial arts class and enjoys anything outdoor related. JJ has a contagious smile that can light up your whole day and make everything brighter. He is the center of our world. He wants to be everyone’s best friend and LOVES playing with other kids. His favorite foods are tacos, fried dough, and ice cream!

I want people to know being a parent to a child with NF is almost like holding your breath until the next appointment or the next MRI results. You are always holding your breath between appointments and always hoping for good results. I want people to talk about NF. Spread awareness. I tell everyone I have an opportunity to tell. Why? Because we need awareness to raise money for research. There should be as much focus on NF as there is every other condition.

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image of young girl outside in front of water in red tank top

Kendall D. – Steps2Cure NF Greater Boston

Why I Walk by Sarah D, Kendall’s Mom

Our journey began years before Kendall was clinically diagnosed with NF. As a baby, she was strong willed; if things weren’t right for Kendall, she would let us know. After eye surgery in preschool, she began wearing glasses and started speech therapy. Nothing slowed Kendall down! She fell in love with music and dance. In grade school, testing revealed that Kendall needed some extra help. She began working with an occupational therapist and truly gained great confidence. She started physical therapy around the same time and worked hard at gaining muscle, improving posture, and strengthening each part of her body. It wasn’t until after we received a doctor’s recommendation to see a neurologist for headaches, that we learned what neurofibromatosis was.

Kendall was diagnosed with NF1 at the age of 8 years old. Discovering that your child has a condition like NF is beyond overwhelming. Because the disease is so complex and is different for everyone, it is difficult to understand. As a parent, it is scary not knowing what the next doctors appointment may reveal. One of Kendall’s doctors told us about NF Northeast and the organization has become part of who we are as a family.

Our favorite event is the walk/run in Wakefield. Each year our team, Kendall’s Warriors, grows in size. It is a fun, family friendly event that anyone can participate in. Being a part of NF Northeast reminds us that we are not alone in the fight to find a cure. We are focused on the present, focused on raising awareness, determined to help fund research and continue to support our NF community every year.

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Young boy in brown sweater smiling and looking into the distance

Austin Q. – Steps2Cure NF Greater Boston

Our son, Austin, was adopted at birth and soon after, it was determined he had NF1. Living in Massachusetts has been a blessing, as we’ve had incredible access to top-notch healthcare.

For the first 11 years of Austin’s life, we mainly dealt with matters impacting behavior and learning, with an amazing team at school and Children’s Hospital led by neurologist Dr. Nicole Ullrich. In October 2023, things changed. During Austin’s annual pediatric ophthalmology appointment with Dr. Eric Gaier, there was concern about a potential issue on his optic nerve, prompting an MRI of the whole head, as recommended by Dr. Ullrich. Fortunately, there was nothing on the optic nerve, but unfortunately, something resembling an infectious disease was found in Austin’s brain. After numerous tests ruled out infection, neurosurgeon Dr. Lissa Baird determined Austin had a brain tumor causing swelling.

Thankfully, on January 9, 2024, the tumor was successfully removed, and by January 16, Austin was back in school. He’s doing remarkably well, maintaining his happy-go-lucky, always-smiling personality throughout the ordeal. The tumor was identified as a low-grade glioma, with follow-up MRIs scheduled every three months. While aware of potential future surprises with NF, Austin’s positive attitude, our outstanding medical team, and the support of NF Northeast give us confidence to face whatever challenges lie ahead.

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Heather N. – Steps2Cure NF Greater Boston

I was born with NF1, which was officially diagnosed when I was 10. Almost everyone on my father’s side of my family has/had NF.

NF has taken its toll physically. As time has passed, I’ve started having more and more issues with my vision and hearing. I also recently found out that I have a fibroma inside my right ear that is blocking my ear canal. My audiologist put a smaller tip on my right hearing aid so it can fit past the tumor. I’ve always struggled with reading and have recently started having a little bit of memory issues. In 2010, I had a GIST cancer tumor removed from my small intestine through surgery, which thankfully cured the issue.

Because of my NF and NF-related learning difficulties, I was constantly bullied in school. I want people to know that NF is not contagious. And that it’s okay to ask questions. I may have NF, but it doesn’t have me.

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three young girls posing with backpacks on their front stoop on the first day of school; Fiona is in the middle wearing a striped dress

Fiona R. – Steps2Cure NF Greater Boston

My name is Fiona, I am 10 years old, and I have Neurofibromatosis Type 1. I was diagnosed with NF when I was 19 months old. I have tibial dysplasia in both legs, which means my leg bones can fracture easily or break. I wear braces on my legs to protect my bones. I have a large growth in my chest. I have MRI’s a lot to monitor the growth in my chest and to check for new growths. A few years ago I went through chemotherapy at Dana Farber to shrink the growth. It was hard because it made me not want to eat and made me nauseous and feel weak and tired. I also have scoliosis and had a surgery when I was five years old to put a rod in my back to help my scoliosis. Every six months, I have a surgery to lenghthen the rod in my back. I have also had several surgeries to put new rods in my back. Those are big, painful surgeries. The most painful part is having surgeries, staying in the hospital, and having to move my back after a big surgery.

The other hard thing about NF is the emotional pain. Not knowing when the next MRI, surgery, or doctor’s appointment is makes me very nervous. I am always thinking in the back of my brain that it could be coming. I also learn differently because I have NF. I am constantly pulled out of my classroom and work with a lot of teachers. Sometimes I miss what is happening in the classroom. My teacher, Mr. Smith knows I worry about missing out and never does fun stuff unless I am in the classroom. He is the best and understands me.

Sometimes I think about what if I didn’t have NF. It would be nice to not have to worry about when my next doctor’s appointment is, MRI, or surgery. I might not have to be pulled out as much from my classroom, and my life would be different and easier. For example, if I am wearing shorts, sometimes people stare at my leg braces and this makes me feel uncomfortable and I hate it. I wish people understood more about differences in people, and how nobody wants to be stared at. If people stared at you, you would feel uncomfortable. So why are you staring at people with differences? People should know better!

Something I want people to know about NF is that it affects everyone with it in a different way. Some people have a mild kind, but some have a more severe kind. Another thing is that it’s not something that you hear about as much as other conditions. Most people wouldn’t hear about it in their whole lifetime. For people living with it, it is a daily problem that can cause so many problems. A wish I have is that more people understand NF so I wouldn’t feel so alone.

Since I was a baby, my parents took me to the Steps2Cure NF Walk in Wakefield. Last year, I walked the whole course all by myself without having to take breaks in a stroller for the first time. This was hard for me because I usually need lots of breaks when walking. I knew it was really important to walk the whole distance to raise money for NF Northeast. I hope this year, more people than ever come and we break a record of raising money! I would like to get more involved with NF Northeast myself to raise money and awareness. It is a wonderful organization that makes me feel better about having NF. Thank you for reading about my life.

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Caesar L. – Steps2Cure NF Capital District

Caesar was born a healthy baby boy on December 21, 1996. His childhood health was relatively drama free but as Caesar got older, he developed some lumps under his skin in different places on his body. One lump appeared on his forehead and another two on his chest, which soon led to school kids making fun of him. His pediatrician thought they were birth marks beause, like many doctors, she didn’t know about neurofibromatosis. After he tried to scratch off the bump on his forehead, we decided to ask a doctor for a referral to a plastic surgeon. Over several months, many tumors were removed and haven’t grown back.

Caesar encountered some struggles with learning and retaining information in school, but by the time he got to high school, the school refused to test him. When Caesar was 16 years old, he tripped over some equipment in the school gym and was knocked unconscious. After a 4 hour wait at the local emergency room, a CT scan was finally performed and the doctors told us to get an MRI for him the next day. There were about 10 tumors in his brain. This lead to the final diagnosis of NF2 (Neurofibromatosis Type 2-Related Schwannomatosis), and Caesar’s journey with Albany Medical’s Children’s Melodies Center began. Brain surgery was performed to lessen the size of a tumor wrapped around his left auditory nerve which unfortunately caused him to lose all hearing in his left ear. He has dozens of tumors throughout his body, which have been carefully monitored by Dr. Weintraub and her staff.

After 7 years on Avastin to keep tumors from growing, he was Avastin-free for about a year. Then, an MRI showed that his tumors were growing, so he was put back on the Avastin. After beginning with an infusion every two weeks, Dr. Weintraub consulted with an NF specialist in Boston and it was decided that he would try every three weeks. Caesar gets MRIs every 6 months to check on tumor growth, with his next MRI scheduled in the next month. We hope that money raised by NF Northeast through fundraising from many sources will one day make the tumors go away.

Caesar is happy and healthy and never complains. Here he is several years ago with his team from a previous Steps2Cure NF – family and friends who love and care about him.

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man holding little boy with sign that reads "For My Brother" (left); boy in wheelchair wearing a Boston Bruins hat holding a sign that reads "End NF" (right)

Landon L. – Steps2Cure NF Capital District

Let me introduce you to Landon. At 18 years old, Landon is the oldest of five children in his family, leading two sisters and two brothers, and just graduated from high school. Landon loves to go to concerts, (especially bands like Clutch and Dropkick Murphys) and also likes taking rides on the back of dad’s Harley whenever he gets the chance. Other interests include virtual reality, playing video games, and learning about history—and you can occasionally catch him with a book in his hands! Landon has his drivers license and hopes he will get his motorcycle license very soon so he can drive his own Harley that is waiting for him in his driveway! We could not be prouder of him for all he has accomplished! Especially when you learn his full story.

As an infant, Landon was diagnosed with Neurofibromatosis Type 1. NF1 is a condition that causes tumors to form in the brain, spinal cord, and nerve tissues. He has many tumors throughout his body, most that you can see directly under his skin. For most of his life, Landon has wrestled intensely with this disease. Although the tumors are benign, the masses themselves cause immense pain and other mobility and vision challenges. Some of these tumors had to be removed through intensive surgeries once they became overly problematic. One tumor was football sized and caused him to hunch over due to the impact it had on his body during growth. It was later removed in 2020 by invasive surgery near his spine, almost immediately after cancer was found in his kidneys. Once the tumor was removed and doctors worked to straighten his spine, they began a two-year aggressive treatment strategy with chemo and radiation alternately to reduce the size of the cancerous mass. All these combined, and especially the chemo, limit Landon physically.

In 2016 he and his family were treated to a trip of a lifetime. Landon wanted to be blessed by the Pope! Make a Wish sent them on a very long flight to Italy where they explored local culture, appreciated the sights, and of course had a special visit with the Pope. We are so grateful to all your contributions so we can all fight and beat this with Landon, together!

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Lacey H. – Steps2Cure NF Western New York

My name is Lacey and I am proud to walk for NF Northeast! I am 21 years old and participate on Special Olympics Floorball and Bowling teams with the Buffalo Yellow Jackets. My goal when spending time with my friends is to be encouraging—I want other people to understand that even though some days are hard, you can still smile and show kindness. Many people have treated me with dignity and respect and I wish everyone would do this for each other.

I was diagnosed with NF1 when I was 4 years-old. My story is even more special because I was CHOSEN! My mom adopted me at 6 years-old and we have been having an awesome adventure ever since. My earliest memory of learning about NF was when my mom and I would count my cafe-au-lait spots. We played a game trying to imagine different animal shapes with my special markings. I remember visiting so many doctors, therapists, and specialists. I really didn’t mind meeting new people because I knew they were all trying to help me feel better. We are lucky to live in the Buffalo area because we don’t have to drive too far to get to my appointments. The medical team at the NF clinic at Oishei Children’s Hospital are always checking up on me and scheduling more MRI’s. They just love taking my picture! I also see a team at DENT Neurological Institute. I have to get injections to help me move better. These hurt but my mom is always there to comfort me.

In school I receive physical therapy, occupational therapy, and speech & language therapies. I have strong relationships with my teachers, counselors, and have made many friends. I earned the nickname, “Mayor Lacey,” because I know everyone’s name and a little bit about them. I have been in a smaller class since Second Grade and have an IEP to help me reach my goals. I have worked really hard and school has been an exciting journey but now, it’s time for me to graduate! I’m so excited to start my next adventure! I have been doing several jobs in the community with the help of my job coaches. I feel successful and proud of myself when I complete my assigned tasks. I hope to be employed in the community and make a difference helping others.

I live at home with my mom, adopted sisters, and foster sister. We also rescued a goofy Labrador pup from the SPCA that I named Mowgli. When he’s older, he will be my therapy dog but right now, he just runs around stealing my socks! My family likes to camp, play board games, and take cruise vacations! We also enjoy watching movies—especially MARVEL ones!

I hope you’ll consider joining me on this walk or supporting my campaign to raise awareness about NF. I’d also love to give encouragement to younger kids just like me! I can’t wait to meet you!

Love, ‘Mayor’ Lacey

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Baylee L. – Steps2Cure NF Western New York

Why I Walk by Kelly L, Mom & Shannon H, Bonus Mom

“Bay” was diagnosed with Neurofibromatosis Type 1 in August of 2015, at the time of her 1st birthday. This was determined by a genetics team; based off her enlarged head size, developmental delay, café au’ lait spots and a verified optic glioma tumor behind her right eye. Early intervention services started in home at this time – including speech, occupational therapy, physical therapy, vision and special education. Services were then carried over at school age program locations including Buffalo Hearing & Speech and North Tonawanda Learning Center. NF1 is Baylee’s primary diagnosis; however, she has also been diagnosed with Autism (age 4), ADHD Combined (age 7) and Epilepsy (age 9) which are some of several comorbidities associated with this disease. She has also struggled intermittently with GI issues throughout the years and ongoing dental issues. Her care team consists of specialists from Oishei Children’s Hospital of Buffalo and DENT Neurological Institute. At home, Baylee is loved and cared for by Mom (Kelly), Dad (Michael), Bonus Mom (Shannon) and her stepbrothers Jacob and Nathan. She is surrounded by an extensive support system filled with an immense amount of extended family and friends.

Baylee’s strength is admirable. Her contagious smile and free spirit bring everyone so much joy daily. She is an active member in The Miracle League of WNY where she plays baseball in the summer, bowls in the fall/winter months and attends other community events. Ever the social butterfly, Baylee loves school, dance parties, listening to Taylor Swift, cheering for the Buffalo Bills, playing Barbies, and being with family and friends. As she approaches age 10, this has been the most trying year for Bay in her NF1 journey. She has endured several hardships along the way—her first tonic-clonic seizure, medication management changes, MRI’s, EKGs, EEGs, and increased appointments.

We cannot thank NF Northeast enough for their guidance and support. This organization has become so special to us and our team, Baylee’s Buffaloes, is looking forward to honoring our fighter at our first Steps2Cure NF walk in Buffalo, NY this May.

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Vincent “Vinny” M. – Steps2Cure NF Western New York

Why I Walk by Doreen G, Vinny’s Grandmother and Caregiver

Vincent (aka Vinny) came to live with his grandfather and me in 2020 when he was 5 years old. He was in kindergarten and the pandemic was taking place. During that time, he only attended school 2 days a week with the remaining 3 days remote at home. We had to have him tested for learning challenges and an IEP was put in place. He also has ADHD and problems with speech.
Vinny has NF1. Shortly after being diagnosed, treatment for various complications began at the NF clinic at Oishei Children’s Hospital in Buffalo. He was in a clinical trial for an optic glioma. He also has precocious puberty that requires an injection every 3 months, that will continue until he reaches 12 or 13 years old. His bone age is 13, yet he is only 8 years old. NF1 has also affected his physical abilities and he receives physical therapy and occupation therapy. Vinny has endured a lot in his young life, losing a grandparent along with the emotional toll that comes with being shifted to relatives.
Vinny has such a love for life and enjoys many activities. His grandpa takes him fishing on his boat at Chautauqua Lake and he has been fortunate to participate in Catching Dream charters. He has attended several summer overnight camps and Camp Good Days recently took him to Disney for 5 days for their annual Florida Fun Fest trip.
He enjoys sports but can’t participate due to his vision loss from the tumor. But that doesn’t stop him from cheering on his favorite Buffalo teams. He NEVER misses a Buffalo Bills game on TV! He has also been lucky enough to go to several Buffalo Bills, Buffalo Bisons, and Buffalo Bandits games in person. He loves going to the festival of lights at the zoo. With help from other wonderful organizations, Vinny has been able to have many new adventures that bring him joy. We have learned so much and received support from Anne, Leah, her parents, and the NF Northeast community.
Vinny’s excitement for life brightens the day for so many. He never complains and enjoys every experience, even though he has so many obstacles to overcome—from braces that help him walk to chemo treatment every 2 weeks. He is an inspiration to everyone who meets him. The world needs more Vinny’s.

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Jeffrey S. – Steps2Cure NF Greater NYC/NJ

I was first diagnosed with NF1 at a very early age and have only met a few people with NF other than my family members. This has led to feelings of isolation and stigma for me. For many years, I was angry and self-conscious, and I had low self-esteem. Presently, I do not take my shirt off in public even when swimming. I also refrain from day spas and massages, something I have always wanted; if nothing else, just to feel “normal” I have grown accustomed to stares from people and cashiers placing my change on a counter rather than handing it to me like the previous customer.

I have also been diagnosed with Moyamoya disease, a rare blood vessel disorder in which the carotid artery in the skull becomes blocked or narrowed, putting one at a higher risk for a stroke. This carries a heavy burden on my psyche every day. I have had numerous surgeries to remove some of the more ‘troublesome’ tumors: and still have many that need attention. When other health issues arise I constantly wonder if it is NF or Moyamoya related and never get definitive answers.

It is my hope and prayer that others with NF do not feel this way. I want them to know that they are not alone. The connection I have made with NF Northeast has been a complete breath of fresh air!! My interaction with NF Northeast has been inspiring for me and I believe offers hope for future generations in so many facets of ‘daily life’ including finding a cure! My mother always wanted me to become more involved in the NF community, and NF Northeast has afforded me that opportunity.

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Annunziata Family – Steps2Cure NF Greater NYC/NJ

Christian Annunziata:

My journey with NF1 began in the earliest chapters of my life when my parents, unfamiliar with the condition, noticed the distinctive freckling and café-au-lait spots on my skin soon after my birth. It was a revelation that came with retrospective clarity, as signs of NF1 had been distinctly present in my father as well. However, he nor my mother knew the cause of his neurofibromas, simply referred to as his “bumps” at the time.

As a toddler, my development was shadowed by the presence of NF1. I encountered hurdles in acquiring speech and motor skills, and school years brought additional challenges, particularly in speech and reading comprehension. I required the help of a speech therapist and additional coursework to overcome my academic struggles.

My childhood memories are punctuated by frequent visits to the doctor. The purpose of these visits remained a mystery to me for years. My parents, perhaps in an effort to shield me from worry, referred to my pediatric neurologist as my “growing doctor.” The routine of annual MRIs, ultrasounds, and eye examinations became a regular part of my life. It wasn’t until my early teens, around 12 or 13, that the pieces of this puzzle began to fall into place. My burgeoning curiosity and attentiveness during medical appointments led me to conduct my own research, leading to the realization of my condition: NF1.

Upon transitioning out of pediatric care, I fell into a false sense of security, believing that I had outgrown the risks associated with NF1. This period of my life was characterized by a neglect of the condition, as I underestimated the persistence of NF1 beyond childhood.

However, years later, my growing interest in health and medicine rekindled my attention towards NF1. Delving into research, I uncovered a wealth of information about its manifestations and realized its lifelong impact. This newfound understanding propelled me to seek specialized care once again.

Living in proximity to NYU, with its dedicated department for NF1, was fortuitous. I scheduled an appointment and began seeing Dr. Yohay annually. I also encouraged my father, who had never sought specialized care for his NF1, to see Dr. Yohay. His first appointment marked a significant moment in our shared journey with NF1.

Through my experiences, I have learned that NF1 is not just a chapter in my life but a continuous narrative that shapes my existence, encouraging me to advocate for awareness and early intervention.

Thomas Annunziata:

I never knew I had neurofibromatosis (NF) until I was 34 years old!

My son (now in his late 20’s) went for a routine baby checkup and the doctor noticed his café au lait spots and that lead to my son being diagnosed. I have the same spots but was never told I had NF until then! I also have cysts which developed in my 20’s, a few of which I had removed before I knew I had NF. I had no other symptoms of NF until recently. No one else in my family has it, including my other son. It is just Christian and me.

I only recently went to the neurologist for the first time ever, because my son told me I should. I don’t dwell on the fact that I have NF and because I learned I had it later in life (and have few symptoms), it hasn’t changed my life too much. I am lucky.

My son is like me in that he has very few symptoms, mostly café au lait spots. My son stays up to date on all the research that is being done. He is a runner and runs marathons in support of NF.

I support charities through my business, mostly Toys for Tots. This year I hope to form a team of walkers for Steps2Cure NF NYC/NJ in Overpeck Park!

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Man with short facial hair in a red shirt and glasses smiling with closed lips

Alex L. – Steps2Cure NF Greater Philadelphia

My NF story consists of me having multiple surgeries, being on and off chemotherapy, as well as having cancer. NF affects me differently in my daily life. Sometimes I’m able to do things, sometimes I’m not. I want people to know they are not alone if they have NF. And my family and friends give me lots of support through my NF journey.

Alex L., who lives outside of Pittsburgh, PA., along with his brother and father, all have NF. In addition to NF, Alex was diagnosed with an MPNST, or malignant peripheral nerve sheath tumor, a cancer of the cells that form the sheath that covers and protects peripheral nerves. Peripheral nerves are those outside of the central nervous system (brain and spinal cord). Alex was treated with chemotherapy and surgery.

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