Become an NF Hero

Are you or your child affected by NF? You can be one of our honored NF Heroes and be the face of our foundation. Apply today and inspire the world to join our mission to end NF!

Adriana_W.2

Adriana W.

“Adriana was about 8 months old when we took her to the doctor because she was sick. It turned out to just be a severe cold, but the doctor noticed all these spots on her body (café au laits)and referred us to a neurologist.

“NF impacts our lives in both negative and positive ways. We have met so many amazing people because of NF that we are so grateful for because they understand and are a great support system. Unfortunately it impacts us in negative ways too, you just never know and every time you think you’ve got a handle on things, something new pops up and brings you back to the realty that is living with NF. You just never know what to expect and every new bump or mark you wonder, is that normal, or is this a new plexiform? Every behavior, is this normal or from her medicine?

“Adriana has always been strong from day one and she is always more concerned about the wellbeing of those around her. Even when she was in chemo from her optic glioma, she would always make sure the other kids got the toys they wanted to play with and that the nurses and doctors were happy too. We stay strong through this to help others to ensure others can smile. Making others smile and find the light at the end of the tunnel brings us joy. We raise awareness and share our story whenever possible to help find a cure; awareness is our biggest motivator.”

-Adriana’s mom, Amber

Adriana loves going to church with her Nana and spending time with all of her friends. She loves school and helping her teacher. She loves to dance and has been taking lessons for 3 years.

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AJ Z.

About Me
AJ was diagnosed with NF1 when he was just 6 months old. Having NF means that AJ has to try harder to do things that most kids might think are super easy. It does not stop him though. AJ is a thinker and a do-er. If he can't do something one way, he'll keep trying until he figures out a way that he can. AJ thinks that the unknown is the scariest part of having NF, but he does not plan on letting it stop him from reaching for his goals though.

AJ is a sweet, kind hearted boy with an old soul, yet he has boundless amounts of energy. He is a friend to everyone he meets. His teachers, the school nurse, his friends, and his family all love him so much. AJ has had many sedated MRIs, surgeries, and specialty doctor appointments. He takes it all like a champ. He is so brave, even when he doesn't want to be. AJ amazes me daily because he never gives up.

AJ is in the 6th grade and he plays percussion in the band at school. He loves hanging out with his friends, playing video games, building things with Legos, and reading mysteries. AJ is full of spunk, bravery, and a "never give up when things get tough" attitude. When he grows up, he says he wants to be a Zookeeper. He has a heart for animals, big and small.

Hobby
Legos, reading and playing video games

Motto
Always be kind to people, it could make their day better

Superpower
Invisibility

Alex1

Alex O.

About Me
When I was 2 months old, my pediatrician referred me to a geneticist to evaluate multiple cafe au lait spots. At 4 months old the geneticist diagnosed me with NF1 based on clinical observations; specifically 17 cafe au lait spots and freckling under my arms and in my groin area.

Living with NF is like riding a roller coaster wearing blinders. You brace yourself for a bumpy ride, but you never know when the twists and turns are going to come. At 18 months old I started getting severe headaches that interfered with my ability to lay down or sleep. At 2 ½, doctors found my first tumors: a large plexiform neurofibroma covering about one third of my back and a small optic glioma sitting on the back of my brain. Because of the location of the brain tumor, I have a 50/50 chance of going blind and am at risk for precocious puberty. There is a slight curvature to my spine which needs monitoring as well. So I get MRIs every 3 months.

Overall, though, my life is one of a typical toddler. I love to hang out with my brother. We tell jokes to each other, make funny faces and use silly voices to pretend we're someone else. We like to build structures with our magna-tiles, trap action figures inside, and then make up stories about saving them. At night we read books, hold hands and pray together. Sometimes we do "sleep overs" in his room. This is one of my favorite adventures. We whisper and giggle until we both fall asleep. I am a very happy little boy.

Favorite Motto
My mom always says, "Be grateful for what you have, not wantful for what you don't."

Favorite Hobby
Playing "Super Heroes" with my big brother

Favorite Food
Hummus

Ideal Superpower
The power to heal

Allison_P.

Allison P.

I was diagnosed with NF 1 as a newborn and face many challenges because of it. Although I never let having NF stop me from living my life. I know I may have challenges to face, but God would not present me with anything I could not handle. I keep smiling and hope that I am an inspiration to anyone who has this unbelievable disease that we struggle with every single day.

I am an upbeat young adult. I love shopping, making other people smile and giving them hugs. If I can make anyone’s day that is what makes me happy.

I pray every single day because of my faith in God, who helps me go through anything in life. I also believe you have to be strong to deal with this disease because it can be very painful. You have to pray and remember that God would not give you anything you could not handle.         

Favorite Motto
Loving God.

Favorite Hobby
Shopping

Favorite Food
Fish

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Amelia N.

About Me
Amelia was diagnosed with NF2 at the age of 4. We are constantly at doctors and very scared of anything new that comes up. Her brain tumor was malignant and a grade 3, which was very scary and turned our lives upside down. We have become stronger by keeping things positive, crossing bridges only when they appear, and keeping everything "yellow" (Amelia's favorite color). We have become very vocal on spreading NF awareness and participate in the local NF Walk here.

Amelia is your typical 5-year-old. She loves learning to read, going to school, and being with her friends. She adores Elana of Avalor (a princess on Disney), dancing, singing, playing outside, helping her daddy in the barn milk the cows, and playing with her younger sister and brother. Her favorite color is yellow, and she loves unicorns!

Favorite Food
Pizza, especially on Fridays at school!

Hobby
Horseback riding

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Andrea

About Me
NF1 has been impacting my life since I can remember. I had an optic pathway glioma in my right optic nerve which, when I was younger, pushed my right eye in a weird shape and position in my face (now prosthetic).

I was not the most popular guy in school. I grew up in Italy where high school is 5 years, but it took me 8 years to graduate. It was difficult facing the learning challenges and coping with bullying. Later in life I decided to move to California, where I graduated with a MS in Biology. My thesis was a poster on the human genetic society in San Diego back in 2014...about NF1, of course.

Instead of stopping me, NF1 had given me the drive to fight, mostly because I feel what it means being disabled by it. The disability is not really physical (at least in my case), I think it is deeper than that because it causes you to doubt your potential and makes you feel different and inadequate. Even though I am employed and I am somewhat successful in what I do, it is extremely hard and very tiresome, almost exhausting. For a "normal" person 8 hours are 8 hours but for me they feel like 12. I need to keep attention to details and learn how to use my other fully functioning senses to balance what I can do.

I have a dream for the future: I want to obtain my PhD and I want to study at the University of Cincinnati. I need just the small push to believe in myself, believe I am not too old and believe I can do it.

Hobby
I like to ride my bike, swim, and I like to make new friends.

Favorite Food
Steak medium rare or alive (just kidding!)

Motto
“You gain strength, courage and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, 'I have lived through this horror. I can take the next thing that comes along.' You must do the thing you think you cannot do.”

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Andrew D.

About Me:
At Andrew's three year checkup, his pediatrician noticed the presence of multiple café au lait spots on Andrew's body. He referred us to a genetic specialist for further investigation. He also printed out some general information about NF. The specialist clinically diagnosed Andrew with NF type 1, and a genetic work-up confirmed the initial diagnosis. The original diagnosis was on October 27, 2016.

Currently Andrew is only showing the symptoms of the café au lait spots, possibly some small tumors on his back, and some learning delays. He has been visiting a speech therapist for nearly a year prior to the diagnosis of NF1. He recently began occupational therapy for other delays. The eye specialist did not find any issues with his eyes, except that he has a weak eye, which we are beginning to treat with glasses and soon patching. The only medical concern was elevated blood pressure, which we had rechecked and it was at a normal level.

Hobby
Playing with my older brother, and watching anything with cars and trucks

Motto
NF won’t break me, I’ll break it!

Superpower
Destroy any obstacles in my way

Anne

Anne N.

About Me
I was diagnosed with NF2 in elementary school, and a number of surgeries followed. School was challenging, but I found my place on the cross country, swim and track teams. For college, I was accepted to Maryville College in Tennessee, which has a deaf studies program and a spot for me on the cross country team.

I met Steve in 2009, and we got engaged at the finish line of my first real triathlon in July 2011. In June 2013, after we both finished college, we got married. We then moved to New Hampshire, embarked on a massive DIY renovation on our first home, and then sold it! We just bought our second house and are looking forward to settling in and plan to stay there for a good while. We plan to get a rescue dog and eventually be parents, probably through adoption, because my NF would make natural pregnancy risky.

Favorite Motto
“There are no shortcuts to any place worth going." - Beverly Sills

Favorite Hobby
Running. It makes me feel strong.

Favorite Food
Chocolate

Ideal Superpower
Tumornator!

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Ashley O.

About Me
I was diagnosed with NF1 when I was born. I have ADHD and it impacts my future how because most of the colleges I apply to don't have a program that supports ADHD students.

I stay motivated by living life to my full potential. I go to college to get my degree in teaching and also hanging out with friends helps my not think that NF and how it affects me.

Hobby
Cooking

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Austin R.

About Me:
Austin was diagnosed with neurofibromatosis type 1 around 6 months old. He had cafe au lait spots and swelling on the right side of his face. Even though I have NF, we were told there was a less than 5 percent chance it would get passed down. He was getting an MRI and, by chance, the anesthesia department was having issues getting the breathing tube down. They called the doctor in charge in the oncology department, who, also by chance, was an NF specialist. That was how he was diagnosed.

Having NF is rough. It has limited the things Austin can do. With limited vision/hearing Austin cannot do all the things he wants to do. But he is a fighter and tries the best he can.

Austin is in the 8th grade. Video games are pretty much his life right now (that, and tormenting his younger sister.

We fight NF by keeping positive. Just realizing that, yes, his is bad, but there are kids who have it worse. Fighting NF has made Austin stronger by being able to stand up for himself. Having the confidence to at least try something, even if he knows he will fail.

Motto
Don’t worry if you don’t succeed, it’s the trying that counts

Favorite food
Big Macs and French fries

Superpower
The power to heal everyone

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Bailey G.

About Me

I was diagnosed with NF2 following surgery for spine meningioma in 2008 when I was 10 years old. NF2 keeps interrupting my life. In the past 8 years, I have undergone 13 brain tumor and spine tumor surgeries, spine fusion with rods and pins, and many MRIs and doctor appointments. 

But I refuse to allow NF to define who I am. I will continue to follow my dreams and live my life to the fullest. I am 18 years old and a first year student at Rochester Institute of Technology, majoring in computer engineering. Spending time with my family always makes me happy and they are my greatest supporters. 

Favorite Motto

Sometimes circumstances suck, but life doesn't.

Favorite Hobbies

3D printing, being a DJ on the RIT college radio WITR Underground, attending RIT hockey games

Favorite Food

Mac and cheese, pizza and Diet Snapple

Ideal Superpower

To make myself invisible

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Bethany C.

About Me
Bethany was diagnosed with NF1 when she was 12 years old.  She suffers every day with pain, but stays strong and carries on with life like any normal person. Bethany goes to school and goes out with friends.

Hobby
Singing

Favorite Food
McDonalds

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Brayden K.

About Me:
Brayden was diagnosed at only a couple months old. When they diagnosed him, my husband and mother-in-law finally had a diagnosis also!

Brayden has a large clump of fibromas on his neck and shoulder region. The hardest thing ever is hugging your child and they scream in pain and there is nothing that you can do to help him. Sometimes he will be completely fine and the next minute he is screaming in pain and rolling around on the floor to try and make the pain go away. Even though Brayden suffers in pain, he couldn't be a happier little boy. His smile lights up a room, he skips everywhere he goes and he has the biggest heart of anyone I know. As far as the future goes, I pray daily they will find a cure for NF to help so many of my family members and others. Until then, we just live day by day and try whatever we can think of for pain management.

Brayden is in 3rd grade. His teachers and friends absolutely adore him! He has a pet dog named Nala, who is his best friend, and a pet bunny named Lucky. Brayden loves to be my "eye for the sky" and tell me when it's going to be a great sunset so that we can go watch together. Brayden loves fishing, camping, picking on his brother and doing family things. Brayden is happiest when he is helping others. He always thinks of everyone else before himself. Brayden is truly our NF Hero!

Hobby
Legos and playing with his big brother

Favorite Food
Nachos

Superpower
“To turn into a Transformer”

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Brittany F.

About Me
I was diagnosed with NF1 at the age of 2. I struggle a lot with it because people make fun of me and I'm just not talking with my friends about it. I only have my mom to fight with me, but she's a great support. My brother are always encouraging me and we always pray before every surgery.

I love hanging out with my friends and playing basketball. My favorite basketball player is Steph Curry and I'm a huge Dallas Cowboys fan. I go to school and enjoy hanging out on the beach.

Motto
With God all things are possible

Hobby
Basketball

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Brycen

About Me
Brycen is 5 years old and has NF1. He has gone through 14 months of chemo to shrink a tumor behind his right optic nerve. He now wears glasses. He has a learning disability and his eating habits are terrible. He only drinks milk or water and has to have his medicine in these.

He enjoys his tablet, race tracks, and watching turkeys run around outside on our front lawn, though he does not enjoy going outside at all. The light bothers his eyes and he is very sensitive to loud noises.

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Carter D.

About Me
Carter was diagnosed with NF1 microdeletion in June 2015. Carter is profoundly delayed with autistic tendencies (basically nonverbal). He has trouble walking so braces are needed. He receives physical therapy due to muscle hypoplasia and weakness. His gate is very unstabl. He also has sensory issues, so eating is a challenge; he mainly only eats dry crackers, chips and Greek yogurt, so supplements are needed. For the first 5 years, Carter hardly slept at all and experienced night terrors, though now with the help of meds, he’s been sleeping much better

We live in a small town in N.W Arkansas. It is a beautiful area but offers nothing for children with more than slight delays or disorders. Carter is the youngest of six: ages 30,26,23,21,20 then himself. His older brothers are a Marine and a sailor, so he comes from a family of fighters Carter may have his challenges but he is the most loving little man around.

Superpower
Carter has a superpower… it is LOVE

Hobby
Hot Wheels, Power wheel and playing with his tablet

Motto
The only limitations we have are the ones we put on ourselves

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Crew B.

About Me
At age 13 months old, we found out Crew had a tumor near his brain stem on his trigeminal nerve. He was formally diagnosed with neurofibromatosis type 1 (NF1). At age 26 months, an MRI scan showed many new and growing tumors in his mouth, tongue, cheek, and neck. Shortly thereafter, Crew began taking a chemo medication.

Crew’s plans for the future are to keep learning, growing and becoming a very strong and independent young man, but living with NF greatly impacts his life. By age 2.5 Crew has had at least 5 MRIs under sedation, he has 8 different doctors, and too many appointments to count. He has tumors in his mouth, cheek, near his brain stem, and neck. The tumors have caused his tongue to be asymmetrical to the extent that the center of his tongue is on the left side of his mouth. His speech is greatly affected and he recently started speech therapy. He often accidentally bites his tongue and gets frustrated when others cannot understand him.

Crew’s doctors recently told us not to wait 4 months for the next MRI, but to schedule it in 4 weeks. At that time, we'll meet with the oncologist and ENT together to discuss options if the tumor in his mouth is still growing. If it is, we will discuss safe surgical options to debulk the tumor, if there are any, or changing his medications. Surgery would be dangerous and difficult because of all the muscles and nerves associated in the mouth and tongue. It could cause chronic pain when eating, swallowing, and breathing. It could cause more speech problems.

NF is giving him very difficult hurdles but, he will persevere. He is such a sweet little boy and deserves to be happy and healthy.

Hobby
Playing with cars, painting, reading and dancing

Motto
His battle is our battle

Favorite food
Pears, peas, and Goldfish crackers

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Dina P.

About Me
I was diagnosed with NF1 at 6 weeks old. The way NF impacts my life is that I see things differently. The way that NF impacts my plans in the future is I know I'm going to be challenged all the time, but I have friends and family that say to never give up. I stay motivated through my art and poetry. I encourage others by keeping a smile on my face. NF has made me stronger by allowing me to share my story through poetry and art.

Hobby
Photography

Favorite Food
Ice cream

Motto
Scars are tattoos that tell a good story

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Eliana P.

About Me
When I was one year old, my parents noticed I had many cafe au lait spots. They took me to a doctor who said that it was possible that I had NF, but wouldn't be sure until I was older. When I was 6 years old, we discovered nodules in my eyes. Then we were certain I had NF1.

Since I don’t have any other NF signs, I only go to the NF specialist once a year and an eye checkup one a year, as well. Recently, I had my first MRI because I was asked to do it before joining the army. (I plan to join the IDF because all citizens in Israel are required to serve.)

Since I’m the only one in my family with NF, a lot of the fundraising and awareness is my job. I found ctf.org on my own and, as I’ve grown older, I’ve felt more of a connection to NF and more curiosity about it. I am hoping to start a fundraiser in Israel (since there aren't any) hopefully with the help of my youth movement. I want people to be aware of what NF is and even that I, someone who shows no clear, outward signs of it, has NF and wants to find a cure.

I am a counselor in the Israeli scouts. I love running and surfing. I feel that music is a great way to express myself so I love playing the guitar, ukulele and singing. I have a dog named Luna and my family always takes her in hikes. I want to be a vet; I have a strong connection with animals and feel as though I can understand them.

Motto
You are stronger than you seem, braver than you believe, and smarter than you think you are

Hobby
Scouts, surfing, singing and playing guitar

Favorite Food
Salad, cupcakes, tacos and fruit

Ellie

Ellie

When my daughter was 2 years old, she started to develop cafe au lait spots. We are on our third protocol of chemotherapy for an optic gluons, so it's tough at times but my daughter is an inspiration to us all.

My husband ran a marathon to raise awareness and I have gone to several NF gatherings. Through events like these we were able to make lovely friends near and far because of it. Ellie loves pugs and going out with her friends.

Favorite Hobby
Running

Favorite Food
Irish coddle

Ideal Superpower
To make NF disappear

Emmersyn

Emmersyn A.

About Me

Emmersyn was diagnosed with NF1 at the age of 17 months after she developed a large tumor in her back. Living with NF is not easy. Emmersyn has had to endure numerous medical procedures including multiple surgeries, countless sedated MRIs, weekly physical therapy, blood draws, sleep studies, endoscopy, and pain management. Emmersyn suffers from chronic pain from her multiple tumors and requires medication twice a day for management. 

We made a choice early in Emmersyn's journey that we would not live in fear of the future, but instead fight back against NF to ensure the best possible future for Emmersyn. Her strength and resilience in spite of her monumental challenges inspires us to keep fighting for a better future for everyone suffering with NF. Because of NF, Emmersyn has developed true courage, a deep compassion for others, and an incredible zest for life. She is a little girl with a big heart and even bigger personality.

Favorite Motto

"Life isn't about waiting for the storm to pass, it's about learning to dance in the rain." - Vivian Greene

Favorite Hobbies

Drawing pictures, playing hide and seek

Favorite Food

Chocolate milk

Ideal Superpower

Super strength so I can be strong like my big brothers

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Gianna N.

About Me
Five years ago Gianna began developing small lumps on her back and wrist. After countless visits she was diagnosed with NF1. Over the years Gianna has endured countless MRIs, X-Rays, biopsies, tests, and doctor visits. She now has over 80 tumors in her body as well as mild scoliosis due to the tumors towing along her spine and back. It has been a challenging few years.
 
Today Gianna is six years old and has just completed Kindergarten. She is a very smart girl who loves her school. Her favorite subjects are Math and Science. She is a fighter and does NOT let NF1 stand in her way. In April Gianna endured yet another surgery to remove a tumor that is wrapped around her carotid artery and was slowly causing paresis of the vocal chords. She is an inspiration and displays bravery in situations that many adults could not withstand.

Gianna continues to show us just how strong she is. As she gets older she is beginning to learn more about NF. Often times she has questions about her future and why she is the only one in the family with this disorder. As hard as this question is to answer, I know that it is one that has to be explained. Our family is believers in Christ and we have explained that God gives his toughest battles to his strongest little soldiers.

Hobby
Play with dolls and painting

Superpower
To be like the “Flash”

Motto
She woke up this brave

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Gunnar D.

About Me
NF has affected Gunnar in so many ways. He has learning disabilities, speech delay, scoliosis, high blood pressure, a tumor in his back, optic nerve glioma and a malignant brainstem glioma. He is currently getting chemo to hopefully preserve his vision and shrink the other tumors. Chemo has caused him to lose weight and have major mood changes. But we take it day by day.

But having NF has not stopped Gunnar at all. Even through all the chemo and doctor appointments, he is almost always smiling and happy. He is so incredibly loving and affectionate. Gunnar is a happy, loving, carefree fighter.

Gunnar is in kindergarten. His favorite class is gym. He loves going to school when he is able to. He likes playing video games, with cars and trucks. He likes playing outside. He's very loving, affectionate, polite and helpful.

Hobby
Playing with cars, trucks and Xbox

Favorite Food
Sausage, biscuits and gravy

Profession
Kindergarten student

Hayleigh

Hayleigh

I am a happy little girl. I am in 1st grade and very smart. I want to play sports and do fun activities but my mom is afraid my leg may bother me or give me trouble. I want to go to college someday. My mommy says I can be whatever I want to be. I also like going to school, making good grades and playing with my friends.

My mommy has NF too. She is the first in our family and has had chemo for an optic tumor. She is so strong and I want to be like her. She has worked every day while having chemo treatments. Despite this, she has taken care of my Daddy and me with a smile. No matter how she feels, she puts others before her. My mommy has taught me I am beautiful and special just like everyone else. She is my hero and I am hers. We stay strong for each other.

Favorite Hobby
Playing with my littlest pet shop

Favorite Food
Pizza

Ideal Superpower
Fly

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Hunter P.

About Me
I was diagnosed at six weeks old so I always knew I had NF, but I really started to notice my NF as I went throughout my school years.

NF affects my life in many ways, including always needing MRIs and constantly having surgery. However I learned that I might have this disability, but I'm still an amazing person who wants to show the world that I can still do what I want to. I've always planned on going into the criminal law field since I was a young kid, but due to my NF, I have epilepsy and of course the tumors, but I'm trying my best to fight through all that and complete my third year in college for criminal law to get my degree and become a police officer.

I stay motivated in many ways, mainly due to my family, friends and my boyfriend. They keep my spirits up especially when I feel down and I wouldn't trade them for anything in this world. I try to encourage others by telling people that just because we do things differently or look a different way than they do, we can still do everything they can. NF has made me stronger; if I can take on that then I can take on pretty much anything in the world.

Motto
Today you are You, that is truer than true. There is no one alive who is Youer than You.

Hobby
Video games, YouTube and cards

Favorite Food
Chicken

Isobelle_M.

Isobelle M.

About Me
After being told Izzy would be dead by the time she was 3, we became active in education and fundraising. Luckily, the neurologist was wrong and 14 months of chemo, hundreds of pokies, and almost 40 MRIs later, Izzy is thriving and loving life.

We live in constant cycle of appointments to monitor her condition while attempting to live life to the fullest. Izzy is a 5th grader at Mattawan Later Elementary and thrilled to be chosen as a school safety. She love acting with a local theater company and is a Junior in Girl Scouts.

Hobby
Playing with my stuffed animals

Motto
Epic

Favorite Food
Mac and Cheese

Jeffrey

Jeffrey H.

About Me

Jeffrey is an award-winning artist on a mission to change the world through art. He is visually impaired from an optic nerve tumor related to NF. Self-taught as an artist, he first began painting while undergoing chemotherapy at age 12, despite his limited vision, and today has raised $2 million for charity through his art. 

Jeff does NOT allow NF to define him, or derail him from his life plans. Jeff enjoys a very successful art business and career. Living with low vision, learning disabilities and ADHD are the worst day-to-day obstacles.

"Fundraising for charity makes me happy. Every act of kindness helps create kinder communities, more compassionate nations and a better world for all...even one painting at a time."

Favorite Motto

Small things done with great love change the world.

Favorite Hobbies

Painting, travel, gaming

Favorite Food

Cheeseburger (cheese only)

Ideal Superpower

Kindness is the only superpower I need.

Jesse1

Jesse S.

About Me

Jesse was 3 months old when the pediatrician noticed the "birthmarks" on his skin. We consider ourselves very lucky that his doctor knew what to look for. She referred us to a neurologist and it was only 3 months later that he had a second marker for NF1 and was diagnosed at just 6 months old.

Jesse is currently working at Dunkin Donuts in our hometown. He recently got a driver's license and will begin community college in the fall. Jesse would like to become a Veterinary Technician by transferring to an accredited program when he completes his associate's degree.

Our family has always been involved in fighting for the NF cause. When Jesse was very young, we held virtual tea parties in May every year and requested donations in lieu of gifts for many celebrations in order to raise money for research. As he grew, so did our involvement. We started an NF Walk in Rochester, NY, where we lived for the first 15 years of his life. We participated in the Racing4Research fundraising program and always worked to connect people who were living with NF. When we moved to Richmond, we helped with organizing the walk here, became involved in advocacy in DC and got even more involved in leading other volunteers all across the country. Jesse will always be a part of a big support network of people who face the same kinds of challenges that he does. He will never have to fight NF without an army around him.

Favorite Motto

In a world where you can be anything, be kind.

Favorite Hobby

Playing X-box with friends online.

Favorite Food

Tacos, but my signature treat to make is a milkshake.

Ideal Superpower

The ability to read minds, so that I would always know what people are thinking.

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Julia T.

About Me
Julia was diagnosed with NF1 in May 2009. Living with NF causes difficulties with school and learning. It also causes physical disability due to tumors on Julia's spinal cord and optic nerves.

Julia has become stronger as she overcomes the challenges of NF and participates in sports and activities with her peers to the best of her ability. She always has a smile on her face and is often laughing and having fun. Her attitude is infectious and encouraging to all who get to know her.

Julia's favorite activity is cuddling with her cat while watching movies. She also enjoys playing soccer and swimming. She loves going to school each day and learning new things. Her favorite subject is art. When she grows up, Julia would like to be an artist or a space police officer, if the job exists by then. Julia often daydreams of being in space, floating freely and pain-free.

Hobby
Art

Favorite food
Chips! After every doctor appointment, Julia requests chips for the drive home

Superpower
The power to make anything

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Kaiden D.

About Me
Did you know that the name Kaiden means fighter or warrior? Even though I am only 9, I have been a fighter my entire life. On April 25, 2016, I had to have my leg amputated due to complications with NF. Losing my leg was very hard for me and everyone in my family. We knew that once the surgery took place, things would never be the same again. Before my surgery, basic things such as walking, running, skating, wearing socks, or even getting in the shower were very painful. I could not even make it through an entire school day wearing a shoe on my right foot. Every step I took, I was in awful pain. But, we were right to think that our lives would be different after the surgery. So different, in fact, because I am now pain free! I can walk, wear socks, take a shower, and recently, while in therapy, I learned to run! I ran for the first time as a 9 year old and it was the best feeling in the world! (My mom even cried!)

Now there is so much more that I want to do, like learn to ride a bike and play tennis. I know that I would have never been able to do those things with my old leg. That is what keeps me motivated. I remember what my life was like before and how I never played with other kids because I couldn't keep up. Now, they can't slow me down!

My family and I work hard to spread the word about NF. In the year since my amputation, together my mom and I have participated in public speaking engagements about NF1 in places such as Valdosta State. In addition, we have written a children's book (scheduled release November 2017) about children with disabilities and physical differences. We participate in the Atlanta NF Walk every year and have even earned recognition as a top fundraiser.

If I could tell other fighters anything, I would tell them to try and have a positive outlook on life. Having NF is tough- there are so many ways that NF can affect you physically, which is why it is important to be as strong as you can mentally and to always find joy in your situation or circumstance. Right now, there is no cure but that doesn't mean there won't be one soon. I fight for NF because hopefully later on other kids won't have to.

Hobby
Drawing cartoons, building with Legos, and singing with the Grammy-Award winning Atlanta Boy Choir

Favorite Food
Hot wings

Superpower
I would like to time travel!

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Katie G.

About Me:
When I had just turned four years old my mother became very concerned. She noticed I had a lot of bruising. She thought I might have leukemia, but the bruises weren't going away. The pediatrician looked at my cafe au lait spots and measured my head. He then stepped out of the room and he brought one of the other doctors in the group in. By the time my mother and I had left, all five doctors in the group had looked at me and referred us to the genetics department at the Los Angeles children's hospital. When we left the pediatrician’s office, my Mom went straight to the library and looked up everything she could on NF.

Due to my NF1, I have had a few complications ranging from bone abnormalities to tumors. I broke my left arm as a child and had a non-healing fracture from the time I was in Kindergarten to eighth grade. I was in and out of casts and wore a brace for the majority of the time. Since that time, I've had numerous surgeries to reconstruct my arm and my wrist. Another complication I have had with NF is tumors. I have a couple of visible neurofibromas on my back. I found out I had a brain tumor when I was in high school. I remember it very clearly. I had a small bump on the side of my head. I didn't think anything of it at first and I thought that I might have bumped it during the night. It hurt whenever it was touched. Throughout the day I became very tired and in a lot of pain. I spent the next two days in and out of the ER. I was then sent to a neurologist who confirmed it was a tumor. Luckily, after what felt like forever, it went away on its own. There have been other tumors, but the one that caused me the most daily pain has not come back.

Because of my NF, I was able to find my career path. When I was a lot younger, I was always seen as the outcast. I could not participate in physical activities like the rest of my schoolmates. So when it came time for PE or similar activities, I always had to sit to the side. My arm had become somewhat of a label for me. I became known as the girl with the arm. When I got to middle school, we had to alternate classes for a week until we went through all of the electives (art, band, PE, theatre, etc). Because I could not take part of the week in Gym, they decided to put me in Theatre for two weeks. I was, of course, against this. I had seen kids in theatre being treated as outcasts. I did not want this for me because I was already seen as the outcast so I did not want a bigger label. But once I had my first week in a theatre class, I knew that I was wrong. Everyone accepted me for who I was. They did not see me as the girl with the arm. I was just Katie. Or I was whatever character I was playing. I found a home in theatre. I continued with it all throughout school and eventually moved to Boston. I am professionally working in theatre, and I hope to advocate about keeping arts in the schools. Because of theatre, I felt accepted. I no longer constantly let my NF or my arm define me.

Hobby:
Theatre, board games, and reading

Favorite Food:
Any form of chicken

Superpower:
I wish I could teleport, that way I could see the world 

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Keirsten W.

About Me
Keirsten is a nine year old girl who loves her family and friends. She was diagnosed with NF1 at birth. She had many of the signs and symptoms: multiple café au lait spots, neurofibromas on the skin, freckling under her arm and groin area, a tumor behind the left eye (optic glioma), skin defects, and short bones.

Living with neurofibromatosis has affected everyday living. Being asked why do you have so many spots on your body? Why do you need help with that easy work? Remembering the simplest things to do daily. Being bashful and worried what people might say or think. Not being able to wear certain clothing or shoes.

Our family is very supportive and always there for Keirsten. Family encourages her to stay strong and continue to pray and trust God and never doubt.

Keirsten lives with her mom, dad, her brothers Marcus, Gary, Garyuntae, Garian (a fifth brother, Martavius, passed away in a car accident), two nephews and one niece. Keirsten loves school and is in the 4th grade. Keirsten loves to read and play teacher and doll house.

 

Superpower
Magic… to stop all the killing in the world and make a cure for all sick people

Favorite Food
Hot wings and mashed potatoes

Hobby
Gymnastics and dancing

Kelly_R.

Kelly R.

About Me
I remember the day I couldn’t see out of my left eye. I became obsessed with waving my hand in front of my face, searching for the sweet spot where I could make it disappear. Earlier that year I suffered through a bout of Idiopathic Uveitis. Believing it had returned, I went to the ER expecting to be given a script for steroid eye drops and then be on my way. Wrong! I was told that my optic nerve was swollen and apparently that’s a big deal; I was admitted.

An MRI, CT scan, spinal tap (try to never need one), and blood work, yielded no answers; I didn’t even get eye drops! What I did get was a neurologist. While he had no clue as to why my optic nerve was swollen, he found something of interest on my MRI: a tumor on my trigeminal nerve. He wasn’t overly concerned, the tumor was small (size of a pea) and I showed no signs of motor difficulties (thankfully he didn’t ask me to do a cartwheel). He casually mentioned neurofibromatosis 1 (NF1) as a possible reason for the tumor. I had never heard of it and he didn’t explain it very well. This being 1994, I looked it up in our old Encyclopedia Britannica. I remember reading the serious sounding description. I thought, “Really, they think I have that!?”

Diagnosing NF1 relies on strict physical criteria and while I did not meet all of the criteria to receive a diagnosis; I had enough that it couldn’t be ruled out. I was 29. About a year later I moved. I found a new neurologist and while he knew of NF1 (which is amazing in of itself), he poo-poo'ed the possibility. His take: even if I did have NF1, it was such a mild case that a diagnosis wouldn’t change how he was treating me. I went along with his thinking and put NF1 on the back burner.

Fast-forward eight years: I found an NF clinic at Johns Hopkins Hospital in Baltimore. After a thorough review of my history and a detailed physical exam, no one in the clinic felt confident enough to give a yes or no. I couldn’t believe it!

Two years later, my geneticist informed me that the lab at University of Alabama had a very reliable genetic blood test for NF1; she said it would be perfect for a difficult to diagnosis case like mine. On September 22, 2005, at the age of 40, I received my official diagnosis of NF1, 11 years after it was first suspected. I wasn’t surprised; I was relieved. I thought, “Yes! Finally, we are done playing around, no more maybes.”

In 1999 I had to have surgery to remove a cyst from my brain tumor. Surgery was eight hours long. The day after the surgery, I could not move my right leg at all! Anyone else might have been freaking out at this point but not me. My surgeon was very confident that I would regain the use of my leg with physical therapy and I placed my total trust in him.

At the ripe old age of 33, I was going to have to learn to walk again. Aggressive physical therapy was started and at first the therapist moved my leg for me. Gradually I was able to move the leg myself but I still needed assistance to walk. After eight long days, I was discharged from the hospital and sent to a rehabilitation facility. Two weeks later, I walked out of the rehab facility with the assistance of a cane and a leg brace.

I embraced my new lease on life and started exercising regularly; I finished my Bachelor’s degree. I had a job that I enjoyed. But my world would be turned upside down again in 2002 when I received a diagnosis of Crohn's disease. Currently I experience extreme fatigue and at times I struggle just to keep up with household chores. With medication and diet changes, I'm happy to report that I have been in remission since 2009.

Hobby
Cooking

Motto
The process is the goal

Superpower
Invisibility

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Kendall S.

About Me
When Kendall was 3 months old we started noticing her spots; when she was 5 months the doctor finally took notice and she was officially diagnosed with NF1.

Kendall misses lots of days of school, and fun things with her friends because of doctor appointments and MRIs. Chemo was hard and she missed out on a lot while going through that. She also has ADHD because of her NF, and that makes it hard to learn and make friends. Right now, we're not letting that affect any plans for her future!

Kendall is a sweet, normal, sometimes crazy four year old. She loves deeply and quickly, and is extremely lovable in return. Her favorite things are her family, friends, and her kitties. She loves to read, look at pictures, and dance and sing. NF can't stop her!

Hobby
Dancing

Favorite Food
Chicken nuggets with ranch dressing

Superpower
To fly!

Krissy

Krissy D.

About Me

I first learned I had NF2 when I was diagnosed at 8 years old. I had light neurofibromas on my stomach and spine that my mother noticed. She took me to a dermatologist and they did a biopsy. They stated I had NF1, but then corrected that it was NF2 weeks following. I am the first in my family history to have the diagnosis making it a spontaneous mutation.

NF affects my life from sunrise to sunset in a hundred different ways. For example, the effects of NF2 caused deafness when I turned 18. I eventually became bi-lingual, learning the beautiful American Sign Language. The many doctor appointments, MRI scans and surgeries have made it sound like a routine even if the aftermath of surgery is painful (physically and emotionally) during recovery. Sometimes things slow down, but you can't leave it to luck that you will be okay tomorrow. I have hope with advancements in science and medicine to cure NF in my lifetime. Until then, I will keep fighting.

Over the years I have learned to adjust and not take life for granted despite my hardships. I had a hard time "fitting in" in many childhood and teenage years as NF2 isolated me and impacted my life with disruptions (surgeries). I entered the NF community when I was 18 to meet others within my age to encourage and support and was lucky to make two wonderful friendships along the way. While figuring out my future plans I ended up going to graduate school to pursue my Master's degree in Creative Arts Therapy and I am now a board certified Creative Arts Therapist through the American Art Therapy Association (AATA).

Favorite Motto

Rest if you must, but never give up on hope

Favorite Hobby

Art

Favorite Food

Sweet desserts

Ideal Superpower

Always be kind no matter what life throws at you

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Lauryn Ann R.

About Me
Lauryn was diagnosed with NF1 when she was 14 months old. She is now 3.

Lauryn has an optical glioma on her left optic nerve, several plexiform neurofibromas (one is located on her right cheek). Lauryn goes through MRIs every 6 months and has had 4 so far. At the moment NF1 doesn't affect her everyday life. She is a happy and fun loving 3 year old.

When my husband and I first found out about Lauryn's diagnosis we were very sad and afraid. We had no family history and had never even heard of NF1. After about a year we started to come to terms with everything and find acceptance. The only thing we could ever want is happiness for our sweet girl. Lauryn is so happy and gives great hugs to anyone who wants one.

Hobby
Playing outside with her sissy

Favorite food
Chicken nuggets

Maddox

Maddox S.

About Me

Maddox is a sweet, friendly, outgoing little boy. He loves playing imagination games and riding his bike. He loves the people in his life, from his teachers at school to his therapists out of school, his friends and neighbors, and especially his family. Although Maddox has a more progressive version of NF1, his day-to-day health is remarkably good considering all of his challenges. Maddox has learning delays and motor delays that affect his daily life. He receives extra help in school for OT, PT, and his class work. He is well loved by his teachers because he has such a fun personality and good attitude about learning.

Our family has become very involved with the Children's Tumor Foundation, which has been life changing for us! CTF has given us focus and drive and a new community of NF Heroes. For Maddox, NF means fashion shows, NF Walks, and fundraisers for Team Maddox. NF means new adventures and fun for the whole family! Becoming involved with CTF has been so positive for all of us.

Favorite Hobbies

Playing on iPad and drawing

Favorite Food

Pizza, mac and cheese

Ideal Superpower

Flying

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Madison R.

About Me
I knew right from birth Madison had NF; she had several large cafe au lait spots, but was not official diagnosed until late she was 5. Luckily Madison's is a mild case (as of now). The only way it impacts her is when it hurts to run (she has a plexi on foot). She keeps saying she is not going to let it impact her in anything she does.

Madison is a very positive child. She tries her hardest and usually does not let anything get her down. She always looks for the good in people; she likes to encourage her friends and family with kind words or by making them a card. Madison is stronger because of her brother’s NF, not hers. She sees how people look and react to him and it makes her mad. So if she sees someone doing it to someone else she will go help that person and try to become his or her friend.

Hobby
Youtube, softball, playing games and reading books

Motto
Everything will get better, it just takes time

Superpower
The power to give people everything they need, so no one has to do without food, shelter, clothing, etc.

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Malorie D.

About Me
“My name is Malorie Lynn and I'm four years old. I'm a pre-KINDER student at a school in Texas. I love riding bikes coloring playing with my dolls and spending time with my mom, dad, sister, and brothers, and what makes me happy is my mom and dad because they take such good care of me.”

“I learned before Malorie was born; her father’s side of the family carries NF; her dad has it, and noticed her spots at 2 weeks old. And at 3 months she was diagnosis with NF1. We take each day as it comes like any normal family and doesn’t let it impact our lives. I'm an NF mother and we're fighting it like champs. This has need me a stronger person, and to pay attention to every bump I notice on her. Malorie is one happy little girl and I hope one day they can find a cure for NF.” Veronica, Malorie’s mom

Hobby
Riding bikes

Motto
Never say you can't do it because you can do it!

Favorite Food
Pizza

mariah

Mariah B.

Before Mariah was born they discovered what they thought was a cyst on her brain in an ultra sound; she had an MRI within the first 24 hours she was born.  At 6 months old and many café a la spots observed, she was officially diagnosed with neurofibromatosis.

“I am 10 years old and am going into the 5th grade. I love working with children in my school who are autistic. It makes me angry with people who say mean things about them.  When I grow up I want to work with autistic children and let them know they are special and God loves them and so do I.

“I love making videos to spread awareness about NF and also make littlest pet shop videos to share on Youtube. I really enjoyed going to the NF Forum in Texas and meeting everyone with CTF.

“Raising awareness for NF is a passion I have learned from my mommy.  I love going to NF events.  We have baseball games, music events, fundraisers, eating together, pub trivia or just spending time together at home.”

Favorite Hobby
Swimming, playing with friends, reading, littlest pet shops

Favorite motto
NF may have brought us together, but now we are in this together

Favorite Food
Crab legs and fries

Superpower
To make the world without hate, violence or sickness

Marisa_M._31

Marisa M.

“I was diagnosed with NF when I was a child. When I was kid, I had some trouble paying attention due to a mild form of dyslexia.  From kindergarten all the way through college I would get extra time on tests, I was never medicated. My mother and my teachers, always understood me, and I always did my best.

“As of right now it's pretty difficult since I have some tumors growing on part of the nerve in my neck area on the right side. At the moment I can no longer grasp, write, or pick up anything with my right hand. I'm also in pain 24/7. Some nights the pain is so severe that I get no sleep. I'm learning to do things with my left hand.

“On October 28, 2013, I had a 3 lbs. 2 oz. tumor removed from my right shoulder area. I was a patient at New York Presbyterian, and was there for about a week. While I was there I had a book, and every person that visited me, had to sign the book and say what made them happy, and what inspires them. I am very fortunate enough to have been raised by an incredible mother, and to have such amazing friends and family in my life.

“When I was discharged I went to physical and occupational therapy for a few months. I was feeling fine and I was able to type, write and continue my work as a photographer, and even one of my favorite hobbies, cooking, with my right hand. Part of my tumor had some cancer signs on it so I had to get a pet scan. Luckily nothing else had spread and I was OK. Fast forward to the year 2015 I started feeling weak and numbness in my right shoulder and hand. I went for countless scans and recently a PET scan. It turns out that there are some new tumors forming in my nerve root area on the right. At the moment, I have no mobility or movement in my right hand so I am learning to use my left hand.

On top of feeling pain, numbness, weakness, and the lack of mobility in my right hand, my mother, who was my best friend and who raised me as a single parent, suddenly passed away last year from melanoma. Dr. Yohay knew her, and knew how tight our relationship was. She was only in her 60s, a ray of light to hundreds of people around the world. People often ask me, ‘How do you do it?’ I express, ‘I was raised by the most incredible mother in the entire world who showed me what strength is, and to never give up.’ Yes there are days I cry with the lack of mobility and the pain in my right arm and yes, I also cry without my mom being here. But, like Dory says, I just have to keep swimming.

Hobby
Cooking and working out

Favorite Food
Kale. Pasta, sushi, and Mexican.

Motto
I just want to make people happy, and I want people to realize that life is such a gift, we must always love fully, and we must never give up on ourselves, or our dreams.

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Michele H.

“I learned of my schwannomatosis diagnosis at the age of 32.

“I have more than 20 tumors and counting. I live in pain daily, but I do not allow this pain to stop me from moving forward. I do worry about the future knowing that I have a tumor on my liver that is growing and inoperable, but I will not let that stop me in helping raise awareness for NF.

“I am a wife, a mother and grandmother! I have the most amazing husband, family and friends who fight this fight with me every day! I am a fighter, I am courageous and I want to raise awareness for NF to find a cure!! My husband knew I had NF before he married me and has been on a journey of tests, radiation and surgeries and stands beside me every step of the way. My parents are my rock!! No matter how old I am I am still there little girl and they walk beside me and hold my hand!

“I love helping others and I run for those who have NF that can't and I fight for those with NF that can't! I want to be a positive role model and do all I can to fight for NF and help with finding a cure.”

Motto
Your smile is your logo, your personality is your business card, how you leave others feeling after having an experience with you becomes your trademark!

Hobby
Running

Superpower
To remove sadness from Earth

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Mikala S.

About Me
When I was 7 years old found out about neurofibromatosis because my little brother was having health problems. When he saw a specialist she noticed signs of NF so my little brother was tested and sure enough he was diagnosed. Afterwards the rest of my siblings including myself were examined and I was also diagnosed

Neurofibromatosis has impacted my life greatly. It impacts my height and the way I learn. I often struggle to learn but it doesn't stop me. I just have to work a little harder than most. I stay motivated because I won’t let NF bring me down through the challenges it brings. I want to keep a positive outlook so I can help others with NF.

I am currently going to school to be a recreational therapist. I also work at a girl’s home and a daycare. I love working with people and helping everyone that I can. I love making others happy. Serving others and being a friend to everyone brings me joy. I love to work with children and hope to be a positive influence in their lives.

Motto
“I alone cannot change the world but I can cast a stone across the waters to create many ripples.” - Mother Teresa

Hobby
Hiking and yoga

Superpower
Be able to go to every country in the world and help many people

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Natalynn Kay C.

About Me
Natalynn is 11 months old and was diagnosed at 9 months with neurofibromatosis type 1. She was recently diagnosed with a tumor on her left cheek and a tumor on the left side of her neck. The tumor that is formed on her neck is wrapped around her carotid artery. This tumor on her neck will be monitored for the next two months. She is blessed with many doctors looking after her.

Natalynn has two big brothers and one big sister. They love having bbqs with family and game nights. Natalynn loves watching her sibling play sports like football, soccer, and track. Natalynn loves to go over to her grandma and aunts to play with her big cousin. Natalynn is the light of the family; she brings joy to everyone around her.

Hobby
Watching Minnie Mouse

Motto
Never give up!

Favorite Food
Banana puffs

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Niles B.

About Me
We learned of Niles’ diagnosis when he was 8 months old. I started noticing some cafe au lait spots on his back and under his arms. Since I, his mom, have NF1, I knew what to look for. I called the University of Iowa Genetics clinic and got in right away to confirm. It came to no surprise, as I knew he had that 50% chance of having NF. Niles has had to endure countless sedated MRIs, physical therapy, blood draws, and he was diagnosed with epilepsy in July 2015.

I stay motivated by being strong and not letting others bring me down. I am always laughing and make my family laugh! We don't live in fear of what could happen! We stay positive and encourage others to stay positive throughout our journey. It's important for us with NF to stick together because one day there will be a cure and we all will be better.

Hobby
Boy Scouts

Favorite food
Chicken Nuggets

Superpower
I really want to invent a machine so I can Teleport

Philip_M.

Philip M.

“My name is Philip and I am 11.  Everyone calls me Little Philip because my dad is also Philip, but I think I'm getting a little old to be called Little Philip still.  I live in Vestavia Hills, Alabama, which is just a few miles away from downtown Birmingham where I see my doctors at UAB's NF Clinic and Children's of Alabama Hospital.  While I don't like all the medical tests and blood work I have to do at the NIH every 4 months while enrolled in the MEK trial, I do enjoy looking for geocaches in Bethesda and Washington DC, trying new cupcakes at Georgetown cupcake, and visiting all the cool museums and monuments, especially the Spy Museum, because I really like reading and solving mysteries and challenges.” – Philip Moss, Jr.

“Little Philip continues to be enrolled in the AZD6244 MEK trial through the National Institutes of Health. This drug has been the answer to many prayers for us. At the one year mark since enrolling, Philip’s tumor is now 36% smaller. We rarely hear children ask Philip what is wrong with his neck anymore. The drug does make Philip fatigued and that can be difficult for an eleven-year-old boy with peers that are active in sports and the outdoors. He takes this in stride and continues to amaze us with his resiliency. He keeps us motivated to fight for a cure.” –Renie, Philip’s mom

Favorite Hobby
Reading and building robotics

Favorite motto
And I will give you treasures hidden in the darkness--secret riches. I will do this so you may know that I am the LORD, the God of Israel, the one who calls you by name. - Isaiah 45:3

Favorite Food
Black beans, sausage and rice

Reggie

Reggie B.

About Me

My mother learned of my NF when I was eight months old. My mom and sisters always support me in my effort to create awareness of NF. My outlook on life: seeing things in a positive way. It’s hard to do at times. But when I think of my friends and family who support me, that gives me all the help I need.

Favorite Motto

Make It A Tremendous Day!

Favorite Hobby

Baking

Favorite Food

Fried chicken

Ideal Superpower

To fly

Robert_P.1

Robert P.

Robert was diagnosed with NF1 when he was 10 years old.

“NF doesn’t stop me from what I want to do. It doesn't impact what I do in day to day. While it does affect my future joining the military, I hope to join the police department someday. Right now, I work at K-Bob’s Steakhouse.

“I have the mentality that only I know how far I can go and what I can't do, and I will do all that I have to do to achieve my dreams. I will not let NF determine what I will do in life, I will make that decision."

Hobby
Photography

Motto
"You just can't beat the person who never gives up." –Babe Ruth

Superpower
To help those in need

Ryan_C_300x300

Ryan C.

About Me
At about one week old, he had some discoloration on his neck, and at the time the doctors thought it was just pigmentation. He developed other symptoms and signs over the next 7 months. The discoloration on his neck turned out to be a very large complex plexiform neurofibroma. Ryan was 7 months old when he was officially diagnosed.

As parents you constantly live in fear. I have learned to take it day by day and enjoy every moment. As for Ryan, he is one happy kid! He does know he has a tumor in his neck and has started asking many questions. Especially when other children point it out, He just looks at them and says, "That's my tumor."

Ryan is now 5 and a ½ and truly a happy little kid. His laugh is contagious and his smile is perfection.

Motto
Always Be Kind!

Hobby
Playing trains or trucks

Favorite Food
Pasta and chocolate chip cookies

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Rylie E.

About Me
Our little ladybug, Rylie, was diagnosed with NF1 at the age of six months after several doctors’ appointments confirmed she fit all of the diagnostic criteria. Two days after her second birthday, Rylie began chemotherapy treatments for Bi-Lateral Optic Nerve Gliomas, brain tumors that have badly damaged her sight in both her left eye. For her entire life Rylie has had to endure countless hospitals stays, including surgeries, MRIs, chemotherapy, blood draws, ophthalmology exams, VEP studies, eye glass fittings, hearing tests, and dose after dose of medication. But, through it all she smiles. She smiles and gives us all the strength and determination tackle another day!

NF, chemotherapy, and everything that has come with this NF1 diagnosis has affected our family in a profound way. Rylie motivates us every day to face NF head on. She showed us all that even on the toughest days we could face anything with the love and support of our family, friends, a smile, and a few good laughs. Those same principles keep us motivated to fight to End NF! We volunteer at NF events throughout our community because they are so much fun! They not only keep us smiling but they help us to cheer up other NF families that might need a little cheering up! These days keep us strong knowing that together one day we will find the cure we need!

Favorite Motto
She believed she could, so she did.

Favorite Food
Ritz Crackers

Favorite Hobby
Dancing and Singing to all my favorite songs!

Sammy_K_1

Sammy K.

“After noticing a growing number of cafe au lait spots, Sammy had a juvenile xanthogranuloma removed and tested and diagnosed with neurofibromatosis type 1 at one year old.

“Sammy struggles with development issues and has also been diagnosed with ADHD and pediatric developmental delays. He receives speech and physical therapy, behavioral therapy, and is followed by several specialists at Dayton Children’s Hospital. I can honestly say I have never felt a fear like the fear of having a child fighting something I cannot control. It can be so overwhelming at times but we take it day by day and stay positive because he is our little fighter!

“As a family we have faced NF with a brave face. We are active in the community and spreading awareness. Sammy loved being part of the NF Walk in Cincinnati this year and will definitely attend more.”  -Rachel, Sammy’s mom

Hobby
Playing outside

Favorite Food
Pizza

Sammy is a 5 year old boy who loves playing outside, working in the garage, and going to visit mammy and papaw.

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Skylar S.

About Me
The week before our daughter turned 5 months old she fractured her leg while playing on her daddy's lap. X-rays from our local hospital said it could be cancer, so our family was sent for further evaluation in Indianapolis, three hours away. After a few specialists we were told she had a rare bone condition called Pseudarthrosis of the Tibia often associated with NF. Eventually we did genetic testing to confirm that she did in fact have NF1.

Our daughter has had four surgeries on her leg due to the fractures not healing. If the latest surgery she had in November 2016 does not work, we could be facing amputation. Because of her leg she has physical delays & cannot get around like other three year olds. She goes to weekly physical therapy and swim class to help strengthen her leg and help her walk.

Skylar is happy, sweet, and smart. She inspires others for all she has overcome.

Hobby
Swimming, singing and dressing like a princess

Motto
Our family has a special bible verse. Matthew 17:20

Favorite food
Chicken nuggets

sloan

Sloan B.

“We learned of Sloan’s diagnoses in early December of 2015. It was right before his 5th birthday.

“Sloan has been in speech and occupational therapy way before his NF diagnoses. We noticed his delays early on and he started therapy at 2. In addition to the physical, occupational and speech therapy weekly, Sloan also goes for MRIs every 3 months to monitor his optic glioma. I believe that we will always have to deal with NF. He will always be a bit behind all of his peers. I'm confident, though, that it will not detour Sloan from accomplishing all that he wants to accomplish in life. We consider ourselves lucky that things were not worse for Sloan and we continue to pray that it stays that way.

“We are newer to the NF family than others. And when I say family, it has truly become a family. I have learned more from the people in our community than anywhere else. The Children’s Tumor Foundation has also taught us so much and always directed us towards the best care for Sloan. We were able to get Sloan’s school involved in raising awareness by wearing blue on World NF Awareness Day and doing activities that helped teach both his friends and his teachers a little more about NF. We walked with a team this summer for the NF Walk and raised a lot of money thanks to good friends. The family has been Sloans #1 supporter and love attending the fun activities that we do to help raise awareness.” - Rebecca, Sloan’s mom

Occupation
Kindergarten student

Favorite Food
Pizza

Hobby
Coloring with sidewalk chalk and swimming

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Sophie N.

About Me:
Sophie's pediatrician was paying very close attention from an early age and at 9 months old she recommended we see a neurologist and geneticist. After several months of appointments we were told Sophie had NF1, handed a CTF printout and were told there wasn't much could do until she started having seizures.

At this point Sophie's NF appears to be mild. However, her low muscle tone means she needs to work a little harder during physical activities, like in the dance classes that she loves so much. She has spent more time in doctors’ offices than a 4 year old should, but every year to do make the best out of our annual trip to Children's National Hospital in DC. The biggest impact is really the fear and uncertainly of what the future holds for Sophie.

We have found comfort in the friendships that have formed with other families facing the same challenges we are. We channel our fear of the unknown into trying to do what we can to advance the cause. As a family, we work on growing Sweet Tea for Sophie, which is a good conversation starter to help us spread awareness and educate people about NF in general

Sophie is funny, smart, adventurous and has an infectious smile. She loves her big brothers fiercely and wants to do everything they do. They cannot leave her side without getting a hug first. She is silly, full of whimsy, and loves to learn. It really doesn't take her long to have you wrapped around her finger. She loves the ocean, collecting rock and making snow angels in the sand.

Sophie is so much more than her diagnosis.

Hobby
Going on adventures

Favorite food
Melted cheese sandwich

Superpower
To be like Captain America

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Sylis

About Me
Sylis was diagnosed with NF1 in March 2017. It came as quite a shock. There are so many "What-ifs?", but we remain hopeful for his future. My son is a beautiful, smart, funny, and caring little boy. He views the world through the lens of a kaleidoscope. I try to see the world through his eyes. When I'm able to, it makes this journey easier.

Hobby
Play video games with Dad

Favorite Food
Ice cream

Superpower
To fly

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Tyler

About Me
Tyler was diagnosed at 9 months old. He had a plexiform neurofibroma that was causing facial disfigurement. We took him to an ophthalmologist who quickly ordered an MRI and a CT scan and was able to confirm NF. He has known about his NF his whole life.

NF is a game changer for sure! Our child has seen more doctors in his short life than myself and husband combined. Tyler misses school at least six days a quarter. We are always on the lookout for new symptoms. We spend a lot more time fundraising and raising awareness than I ever thought possible. We have to take into account future appointments before we plan anything. Our future feels unstable all of the time.

Through everything, Tyler maintains a positive attitude despite all setbacks. He is kind and funny. NF can feel like a big weight on your shoulders. He gets up every day ready to tackle the day. He raises awareness by wearing his NF shirts, participating in a golf benefit in MT and Iron Butt 4 NF. The fact that he has endured pain, injections, disfigurement, school problems and upcoming surgeries while maintaining his upbeat personality makes him a hero!

Hobby
Nerf gun wars and waterparks

Favorite food
Pizza

Superpower
Flying!

Tyler

Tyler H.

About Me
I was diagnosed with NF1 at birth. As a child, I was always at the doctor and lost my fear of needles. Now, as an adult, I have become more mindful and proactive about my care. Living with NF is challenging, though we consider ourselves fortunate. Although we are constantly monitoring any significant changes, especially visual, we are optimistic.

We always pray and hope that we find a cure soon. I talk to and try to encourage others with NF, and they encourage me. I also want to be an example of a person who can accomplish extraordinary things with NF. NF has made me stronger and drives me to succeed because I don't want people to think that people with NF are less capable. My family is very involved with raising funds and awareness to find a cure, which makes me proud.

Favorite Motto
"You may have to fight a battle more than once to win it." -Margaret Thatcher

Favorite Hobbies
Working out

Favorite Food
Steak and spinach

Ideal Superpower
To see the future

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Tyler W.

About Me:
“When my son was about 13 years old, he had blurred vision, slurred speech, and a hallucinating episode which I thought may have been a reaction to an allergy medicine. I took him to a local ER and it was there that we found that my son has multiple brain tumors, several brain stem gliomas and hydrocephalus.

“Tyler has had several brain surgeries, years of chemotherapy, multiple MRIs, and most recently, has had an NF tumor excised on his back, which oddly enough was found to have some type of bacterium. This was a difficult time for Tyler and he continues to heal and fight off this infection, the most recent pathology is still pending. Tyler continues to struggle daily with effects of his illness. He has severe developmental delays, vision loss, memory loss, physical pain daily from tumors on his legs, left and right sciatic nerves, and many other issues.

“Tyler, now 23 years old, has persevered through many hard times, while this illness continues to create many obstacles for him. He continues through it all, helping others and helping his community as a member of the local fire department. His constant positivity and strength inspires friends, family, and even strangers. He just keeps going, moving forward and always with a smile that can light up the darkest of days. He really is our strength.

“Tyler is happiest spending times with family and friends, laughing without having all these worries. Tyler is unable to work at this time but hopes sometime in the future he will be able to do something he loves, like woodworking.”

Hobby
Legos, John Deere tractors, and golfing with his friends

Motto
Stay Strong Never Give Up

Favorite Food
Tacos, pizza and chicken nuggets

William_G.

William G.

“I was diagnosed with neurofibromatosis when I was about 7 years old.

“It impacts my life a lot because it's hard to find a job without people judging you before you get even hired.

“My NF has made me stronger because you never know how bad it's going to get. I still try to be motivated to get out and do things, but sometimes I feel like giving up, but I don't, no matter what people say about me.

“I am not working right now because I had cancer. I have overcome that part in my life and have been cancer free for 5 years. I try to understand why these tumors continue to grow, but I am staying positive and hopeful that one day they will find a cure.”

Hobby
Watching sports

Motto
Never give up

Superpower
I want to be Superman

Zoe_P.

Zoe P.

When Zoe was a baby she had a couple of birthmarks, which the pediatrician recognized as cafe au lait spots. She was then evaluated, followed by a geneticist, and diagnosed as a toddler with NF1 by clinical criteria.

Zoe gets MRIs to monitor an optic glioma and has to miss school because of it sometimes. She is very brave and patient when it comes to the MRIs and does it without hesitation. Sometimes she gets teased about how she runs, but still she perseveres. Zoe can do things she was not able to do before because she is a hard worker and passionate. She does not let NF determine what she is going to strive for.

Zoe is curious, observant, kind and funny. She also has many interests and talents. She speaks fluent French because her mom is French. She enjoys martial arts, musical theater, softball, drawing, math and science, specifically geology. She also loves to spend time with her kind and loyal dog.

Favorite Motto
Keep moving forward

Favorite Hobby
Cooking

Favorite Food
Broccoli cheddar soup

Ideal Superpower
To hit a homerun.