Our NF community is made up of a diverse group of friends, families, and supporters all around the world. Each day, as our community grows, we are reminded of the many journeys, stories, and faces that make our NF family so special. We are constantly inspired by your strength and passion, and the NF Network is proud to work alongside you in the pursuit of better treatments and a cure for neurofibromatosis.

This May, for NF Awareness Month, we are “painting a new portrait of NF” and sharing the stories of some of the members of our NF community. Working in partnership with Rachel Mindrup, we are honored to showcase several incredible portraits from her “Many Faces of NF” series and help spread awareness with her artwork and the stories behind her pieces.

Rachel Mindrup is an assistant professor of drawing and painting and the Richard L. Deming, MD Endowed Chair in Medical Humanities at Creighton University. She writes, “My son Henry's diagnosis has been the motivation behind "Many Faces of Neurofibromatosis (NF)". Through this series of paintings, I am the conduit, transforming genetic complications into something secondary and portraying the individual personalities first. Using social media as a connection, I hope to raise funds, educate, and ideally find a cure for NF.”

Throughout the month, the NF Network will be sharing these portraits, stories, and quotes from the portrait subjects’ on why raising NF awareness is so important to them. Meet some of the Many Faces of NF:

 

 

 

 

 

 

 

 

 

 

 

Tim and Gail – Canada

“I don’t see NF – just bright eyes and my mischievous smile. Despite having NF and all the complications that come with this condition, remember you are stronger than you think. Just be you, and love yourself for being you!”

Tim and Gail have spent their whole lives raising NF awareness and living their lives to the fullest. After attending an NF symposium around his 40^th birthday, Tim finally met other peers with neurofibromatosis and quickly became involved in a handful of Canadian NF organizations. Gail has not let her NF slow her down; she plays several sports and has two university degrees. Gail has also spent over 31 years as a social worker. Tim and Gail married when Gail was 53 years old, and they continue to find joy in numerous activities like golf and 5-pin bowling.  

 

 

 

 

 

 

 

 

 

 

 

 

Larry and Joan – Mississippi

“So many will turn a blind eye when it comes to NF. NF awareness breaks the barrier of understanding – it gives an insight to what NF is and the impact it has on so many lives.”

Larry and Joan found comfort and understanding in each other, and married a year after they met. They leaned on one another and encouraged each other to pursue their passions. Joan abandoned piano for many years, but with a boost from Larry quickly picked it back up again. Joan admitted that she may not be Mozart, but she found it relaxing and it kept her mind off of her troubles. Together, they participated in the #NFStrong 5K in Memphis and lived happily until Joan's passing in 2017. Joan still lives on in memory, as many others in our NF community.

 

Jen – Missouri

“I used to be scared to share my story. Now, I’m looking for more ways to be involved with raising awareness, finding a cure, and the fight against NF.”

Growing up, Jen knew she was different from others - including her siblings. Despite comments from her teachers, Jen worked hard and pursued higher education. With determination, perseverance, and strength, Jen obtained her bachelor’s degree and her master’s degree in elementary administration with a 4.0 GPA. It was during this time that she learned of her NF1 diagnosis and discovered multiple tumors down her skull, spine, and tailbone. Jen decided life was too short and began to travel around the world. She has traveled to over 15 countries and is looking to fill her passport before it expires in the next couple of years. She works out 5 to 6 days a week and considers her gym family as another family that she can lean on for support. Currently, Jen is living in Kansas City and is involved with the NF Central Plains chapter. She is looking for more ways to be involved with raising awareness, finding a cure, and the fight against NF.

 

Ashley – North Dakota

Ashley was diagnosed with NF1 at the age of two due to a spontaneous gene mutation. Throughout her life, Ashley has experienced slower hand-eye coordination, balance issues, dizziness, numbness in her right hand and right foot, chronic pain throughout the body, spelling and comprehension, and headaches. Despite these challenges, Ashley has remained extremely active. She attends a CrossFit gym 4-5 days a week and runs 2-4 miles a week on her days off from CrossFit. There are some things she needs to modify during the workouts due to her nerve pain throughout her body and the numbness in her hand and foot. In January 2019, Ashley was awarded the Grit award from CrossFit Fargo. In October of 2016, Ashley ran a 10K to raise awareness for NF, sporting a Run4NF singlet. She finished the 10K in 58:16.

Ashley is a licensed massage therapist and reflexologist and owns her own massage therapy business called Ashley Rae’s Massage which she opened in 2011. In addition to her CrossFit and business accomplishments, Ashley continues to actively raise awareness. Ashley joins the NF Network Advocacy Program in Washington, DC every year to talk with Congress and ask for NF research funding through the Congressionally Directed Medical Research Program (CDMRP).

 

Jennifer – Washington

“I know how NF affects me, and I know how it affects others as well. We are strong, and even stronger together. Yes - we are different, and we will find a cure.”

Jennifer Berube was diagnosed with NF1 at age 25. Genetic testing revealed that she was a spontaneous mutation in her family. Over the years, she had many surgeries to remove individual tumors that became painful, including an electrodessication procedure (ED) to remove over 500 tumors at one time on her back.

Jennifer struggled in school both academically and socially, though it wasn’t until college when she was told she had a learning disability. Through her hard work and with the support of helpful teachers, Jennifer went on to graduate and get her AA degree in Early Childhood Education. After 25 years of working for the State of Washington, Jennifer retired in 2017 and is now even more involved with NF groups. She tries to be an advocate for all those that have NF.

 

Savanna – Nevada

“I’ve met the most incredible people because of NF – a family, really. Living with NF has made me into the person that I am today. I’m a fighter.”

Savanna Pageau was diagnosed with NF at the age of two. At age 11, after months of pain in her foot, she has her leg amputated above her right knee due to a complication with NF. Over the years she has undergone revisions of her leg, as well as additional surgeries to have neurofibromas removed. Despite being bullied at a young age, Savanna didn't allow the bullies to deflate her spirit. Savanna was on her swimming and diving high school team, and she also participated in open water swims, rock climbing, and skydiving. In her efforts to raise awareness, Savanna works alongside Jeff Leibow and the Las Vegas’ NF Hope Concert.

Savanna wants to be more than "the girl with tumors,” "the girl with one leg,” or "the girl on crutches.” Savanna wants to make an impression and make a difference to those who live with NF and feel alone. She is a NF warrior who has overcome many challenges, being pointed and stared at and having moments of "why me?” In the end, she wouldn't change anything - living with NF made her into the person that she is - a fighter – and has brought her into a family.

 

Elana – Kansas

“Having my brain surgery made me more aware of NF and empathetic toward others with the disorder.”

Elana loves ice cream — not just eating it, but scooping it too. That was her summer job before starting college. The years leading up to that point were challenging, exciting and interesting. Elana was diagnosed with NF1 at age 3 due in large part to her cafe au lait spots. She grew up in Texas where she enjoyed a childhood without medical complications. During a routine MRI when she was 11 years old, her NF specialist discovered a brain tumor. The surgery to remove it was successful, and she was released from Children’s Hospital in St. Louis on her 12th birthday.

Having brain surgery made Elana more aware of NF and empathetic toward others with the disorder. She began sending personalized care packages to children in the NF community who were undergoing surgery or treatment for their tumors. Over the next two years, Elana would send over 100 packages to children in over 25 states! Elana’s involvement in the NF cause grew as she herself grew. She served as a counselor-in-training at Camp New Friends (a camp in West Virginia for kids with NF), helped narrate a national video to raise awareness, and did fundraising by selling duct-tape wallets that she made herself. Most importantly, she advocates for NF research dollars on Capitol Hill in Washington, D.C. with the NF Network, a national organization that leads the advocacy efforts to find treatments and a cure for neurofibromatosis.

 

Reggie – Texas

“I want to make NF known throughout the world.”

Growing up with NF, Reggie Bibbs had his challenges of surgeries and hurtful episodes. He remembers one incident which he recalled, “Most of my teachers at Pershing were nice to me, but one incident haunts me still. I was waiting for the bus when I was fifteen. A teacher walked toward me asking, ‘Where did you get that thing?’ He was accusing me of having a mask on. It was no mask - it was just me. Taken aback I gasped, ‘What?’ When he realized what he had done, he simply shook his head and walked away. I did not know what to say or think; I realized then that I was angry. By turning away from me with no apology, he did not acknowledge my humanity. If he had looked into my eyes, he would have seen a child who was hurt; he would have felt repentant. But he did not look at me long enough to see anything.”

Reggie is the director of the “Just Ask! Foundation,” a non-profit organization dedicated to raising NF awareness by simply wanting people to start dialogues about NF and become informed about the disorder.

 

David – Michigan

David Gladyness inherited his NF from his mother’s side of the family: his grandmother, his mother, and four of his mother’s siblings, four of his cousins, one of his brothers, one of his brother’s children and both of her children all have NF. David is a talented, trained chef. He got his love of cooking from his father who was born and raised in Louisiana. It is not surprising that David’s favorite cuisine to prepare is Cajun or Creole. While in culinary school, he had the opportunity to travel to France to cook for the stars in the American Pavilion at the Cannes International Film Festival. Besides going to Washington, D.C. to lobby for fund for NF research, David is also very instrumental in running and organizing an NF camp for kids in Michigan.

 

 

 

Matt – Indiana

“When I was first diagnosed with NF2 in 1997, I felt very alone. No one I knew had even heard of NF. I decided to make increasing awareness and fundraising for the disorder a lifelong commitment so others wouldn’t feel that same loneliness that I experienced.”

Matt Hay is a married father of three who works in media sales and marketing. He was diagnosed with NF2 during his sophomore year at Indiana University. As a result, over the last 15 years, Matt has dealt with deafness, facial paralysis, vision problems, and balance issues, as well as long recoveries from a spinal surgery, 2 brain surgeries, and 9 eye surgeries. Matt deals with NF2 by focusing on what he can do rather than what he cannot. In addition to being an avid fisherman, he spends his time raising funds for NF research. He also earned his MBA degree from the Indiana University School of Business in 2010. These accomplishments were things he once thought impossible due to the physical challenges caused by NF2.

His involvement with NF organizations and the physicians he has met at events led him to learning about the auditory brainstem implant (ABI) that allows him to understand speech with the aid of lipreading. By staying involved with the NF community and taking part in fundraising walks, runs, and other events, Matt is able to maintain certain aspects of his health that are within his control. He also appreciates the “upward spiral” that he experiences both mentally and physically from interacting with such a supportive community of caring people.

 

Nichole – Kansas

“NF has claimed the sound from my life, put a hitch in my step, and has taken the true smile from my face, but it will never take the smile from my heart.”

Nichole Servos was diagnosed with NF at the age of 8 due to having a few skin tumors. While recovering from a severe case of pneumonia at 16 years old, she lost hearing in the left ear. It was discovered that she had several brain tumors, one which would need to be removed, and another needing action to keep it from taking the hearing on her right side. By the time Nichole reached the age of 18, NF had created a new chapter in her life - leaving her completely deaf to sound. Despite the toll, she continued to lead a fulfilling life, attending college and marrying her high school sweetheart.

NF spared Nichole and laid dormant until shortly after her 30th birthday. She began to have facial weakness on the left side. The brain tumor which had already been removed had come back and now claimed one side of her face along with another tumor on the opposite side waiting to take the right side of her face. NF brought a rash of procedures and hospitalizations, 6 brain surgeries within an 18-month time span and left her literally expressionless. Among the procedures, she has since received an Auditory Brainstem Implant (ABI) which helps her “hear” sounds again, and Facial Reanimation surgery which has restored part of her facial functions. NF has claimed the sound from her life, put a hitch in her step, and has taken the true smile from her face, but it will never take the smile from her heart. Nichole has become actively involved with the national Neurofibromatosis Network and currently serves as the President of the NF Central Plains chapter.

 

Krizelle – Ohio

"I raise awareness to let people with NF2 like me know this: you are not alone. Every day I spend in the lab I dedicate to help bridge that gap in NF2 scientific and clinical knowledge, and find a cure for this disorder."

Krizelle Alcantara was a 15-year old Filipino high school junior with a keen interest in science when she was diagnosed with NF2. An MRI scan revealed the enhancement of both hearing nerves and meningiomas scattered throughout her brain – hallmark tumors of NF2. Although asymptomatic, she underwent gamma knife surgery when she was 18 to stabilize her tumors, including the neuroma on her right acoustic nerve which left her deaf on that ear. She also underwent surgery at 20 to take out twin tumors involving her right parotid gland and masseter muscle, which were dangerously close to leaving half of her face paralyzed.

Throughout her ordeals, Krizelle’s passion in science never wavered. In the Philippines, there are no centers specializing in NF2 patient care, nor are there foundations focused on helping people with NF. This gave her the motivation to finish both her Bachelor and Master of Science degrees in molecular biology and biotechnology, for which she investigated molecular mechanisms that contribute to inactivation of the NF2 gene. She presented the findings of her research at the 2017 NF Conference organized by the CTF in Washington, D.C. She also volunteered as a patient representative in the Response Evaluation in Neurofibromatosis and Schwannomatosis (REiNS) international collaboration, a group which aims to achieve consensus within the NF community about the design of future NF clinical trials.

 

Aaron – Michigan

Aaron Anderson was born in Michigan in 1981. He was a chubby little blonde who never met a ball he didn’t want. The diagnosis of NF1 at age three was a shock. Apart from some fine motor delays and a moderate degree of ADD, Aaron’s NF had only minor impact on his early school years. In 2006, Aaron was accepted into a PhD program in California to study child development. It only took a year to realize he wasn’t enjoying life as he had in Ann Arbor. Everything changed in March 2008; he stopped going to class, answering emails, texts, phone calls or knocks on his door. It took three months of this reclusive behavior to get him admitted to the psych ward of the university’s hospital. They found a tumor deep in his brain, malignant and inoperable. Six months of treatment brought him back to his fun-loving self. At nearly 28 years old, he moved home to Michigan to live his best life, not as an academic, but as a DJ and record dealer. He died in Buddhist peace at age 30, leaving a trail of friends around the world.

The story continues past Aaron’s death in Sept. 2011. With the help of his neuro-oncologist at Michigan and NF researcher, David Gutmann in St. Louis, Aaron was able to donate his body to the Univ. of Michigan and his brain to Dr. Gutmann’s Washington University lab. Within seven years the speed and accuracy of genome analysis increased so significantly that the progression of the brain tumor, a glioblastoma, could be tracked through its many genetic changes. A brief paper about the tumor appeared in the journal Neurology in late 2019.

 

Keisha – Malaysia

“I do not see reason to consider these scars a disfigurement of my body. Rather, I choose to see them a testament of how trials and adversity can unite the human spirit. Out of tragedy, my family, doctors, nurses, physiotherapists, caregivers and friends have united time and again to shine forth with the ultimate good within humankind. This is the story behind each and every scar on my body - of a unity of care and love turning tragedy into triumph.”

The 25-year story of Keisha Petrus can be summed up in overcoming the challenges that NF2 threw her way through a multitude of surgical operations, a few radiosurgery sessions and chemotherapy. She was first diagnosed with NF2 when she was 4 years-old through an MRI which showed tumors growing on her hearing nerves. Despite these tumors, Keisha lived a normal childhood until she was almost 10 years-old in 1999. She had her first brain surgery in Los Angeles, CA that year. While the tumor on the left side of the hearing nerve was removed successfully, she was left half-deaf, and half of her face was paralyzed. Following the first surgery, she had four spinal operations before her death in 2014 – one in Malaysia, two in India and one the United States. She’s also had two radiosurgery sessions in India and underwent experimental chemotherapy at Universiti Malaya Medical Centre in Malaysia.

Her quest to live life to the fullest led her to pursue her dreams, from getting behind the wheel and driving as a person with a disability in Malaysia to swimming with dolphins - something she got to do in 2012 when she visited San Diego. Indeed, Keisha did more than just live her dreams - she used her NF2 to encourage people to realize their true potential and to come together and unite in love.

 

 

 

 

 

 

 

 

 

 

 

 

Henry – Nebraska

Henry Mindrup was diagnosed with NF when he was four months old due to the multiple cafe au lait spots all over his body. His NF results from a spontaneous gene mutation. He has fine motor skill delays, executive function disorder, low muscle tone, balance and coordination problems and ADHD. At two years old, a tumor was found on his left optic nerve and he has been seeing a neuro-ophthalmologist since that time to have it monitored. Small neurofibromas grow on his chest and near his spine as well as a plexiform on his back. Continued findings of abnormalities in his brain MRI scans are indicative of several brain tumors. He had brain tumor surgery in 2019 to reduce the size of a thalamic brain tumor that was threatening function on the left side of his body.

Henry, who is sixteen years old, wants to study meteorology. He checks the forecast daily and is the family's weatherman. He is a resilient teen and never complains about all of the medical exams, minor surgeries and appointments, well rarely complains. He is a teenager, so he complains about trivial stuff instead!

 

Noah – Tennessee

“Through test after test, poke after poke, symptom after symptom: he never complains. His smile doesn’t fade, his outlook stays positive. We could all learn from that.”

Noah Hester was diagnosed with NF at five months old at a routine exam. Noah also lives with Moyamoya Syndrome - a rare disorder that effects the vessels in the brain. Since his diagnosis he has had three strokes, many surgeries and suffers learning differences plus physical deficits. After two cerebral events: one in 2005 and one in 2014, Noah underwent cerebral vascular surgery, giving the family hope that the strokes were behind him. His love of movies, sports and video games keep him entertained and very busy.

He has worked at Regal Cinemas since 2017 and looks forward to every minute. He is even on a first name basis with several celebrities who frequent his theatre! What makes this young guy especially remarkable is that through test after test, poke after poke, symptom after symptom: he never complains. His smile doesn’t fade, his outlook stays positive. Noah and his family owe much to NF Tennessee and the Tennessee NF community. They hope to continue to support their efforts and do everything they can to ensure their success.

 

Michaela – South Carolina

Michaela was born in Rome, NY to a military family. A spontaneous mutation, Michaela’s NF diagnosis was only discovered a routine wellness exam at the Air Force base that her dad was stationed at in Texas. Growing up, Michaela enjoyed learning German and enjoying those traditions as her father met her mother when he was stationed in Germany. She has two younger brothers - one now a dentist, and the other a real estate broker. She also has one son who is does not have NF and will be graduating soon from Winthrop University.

Michaela has had to have some of her NF tumors removed and more recently has battled both stage 4 breast cancer and brain cancer during her adult life, all within the span of less than two years. While NF doesn't necessarily cause breast cancer, those with NF have a five times greater chance of having it compared to the unaffected population (per information from the National Institute of Health). Prior to battling cancer, Michaela worked as an elderly caretaker and loved it. The constant toll of being on chemo and radiation leaves her feeling fatigued quite often. Michaela loves kayaking, yoga, movies, music, travel including cruises, swimming, drawing, reading and going to the beach along with tai chi gi gong meditation.

 

Candice – Florida

“I advocate for NF research with one goal , that every child born after me with NF will suffer less until no child has to suffer at all.”

Candice is a lifelong survivor of NF. Born with a Neurofibroma facial tumor in 1969, she underwent over 30 surgeries to re-reconstruct her face. Loving herself during such an extensive healing process was an effort of enormous physical and psychological endurance. Candice has said many times that being born different is one of the truest tests in a human’s capability to love. The impact of NF doesn’t define her but is a catalyst for her purpose driven life. Candice has used her life experiences as a patient to become a dedicated ER Nurse, inspirational speaker and triathlete.

She now shares her life experiences with adults speaking at schools and conferences bringing awareness for NF and sharing healthy life strategies. Her goal is simple - to leave behind a legacy of hope for children to not have to endure a life of surgery. That opportunity presented itself as Candice has also undergone diagnostic testing and donation of tumor tissue to progress toward a cure. She has spoken at many craniofacial conferences for All Children’s and Moffit Research Hospital in Florida. Her goal and mission continue to help others accept themselves for who they are and propel research for a cure forward.

 

Jose – Oregon

“Don’t let NF define you and seek out what makes you happy. I understand the difficulty that NF can cause in people’s lives, and I hope one day it is a thing of the past. To the NF fighters – keep fighting and keep spreading the word. Through awareness, we can find a cure.”

Jose grew up in the North Bronx, in New York City. At a young age, Jose knew he had several café au lait spots, but was always told they were birthmarks. He was born with NF1, passed onto him from his father. His doctor never brought it up, and his family had a very little understanding of it.

Years later, life brought him to the Pacific Northwest, and he resides in a suburb of Portland, Oregon. He has been married to his wife Stephanie since 2008, and they have three girls: Dalia, Shea, and Izabella. Shea and Izabella also have NF1. The Torres family has worked hard to create more NF awareness. Although the tumors have become numerous in Jose’s adult life, NF1 has not stopped him from loving life. Stephanie and Jose are raising their children with that same attitude. When Jose isn’t spending time with his family, he is enjoying his job as the Associate Director of Sales and Training for Oregon Market, a large retail company.

 

Marcus – Maryland

“Raising awareness is not only important for the world, but for everyone one with NF - to remind us we are not alone and that we are strong and resilient.”

Marcus was diagnosed with NF at the age of one. From a young age, he faced challenges with headaches, speech, social isolation and chronic pain. Marcus continued to push himself, graduating from The University of North Carolina at Greensboro and moving to Washington, DC. In 2010, x-rays, MRIs and other tests found tumors on his spine and a plexiform neurofibroma in his pelvis. Faced with the idea that he may not be able to run again, Marcus pivoted his focus and began spin classes, lifting, swimming, stretching and working on his balance in order to build up his strength. In 2014, for the first time in 4 years, Marcus was able to run.

Marcus says, “Every day I wake up, and decide to push through the pain knowing that things will become better. I believe in practicing mindfulness and gratitude to enjoy the moment and take my mind off of issues I am facing. We all must work together as a family to bring awareness and an end to NF.”

 

Help us spread NF awareness during the month of May! Join our #UnveilingNF campaign and learn other ways to get involved by visiting our NF Awareness Month page.