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!

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

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

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

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

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

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