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.

Alex1

Alex

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

Anne

Anne

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!

Bailey

Bailey

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

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

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

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

Jeffrey

Jeffrey

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

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.

Krissy

Krissy

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

Maddox

Maddox

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

Michele_H

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

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

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

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.

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

Tyler

Tyler

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

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.