People Spotlight

Henry Ford Health works to raise neurofibromatosis awareness

The Gilbert Family Foundation and Henry Ford Health are working together to learn more about neurofibromatosis to help patients like Tracy Irby. Neuro-oncologist Dr. Tobias Walbert believes the work that will take place at the Nick Gilbert Neurofibromatosis Research Institute will open new doors for patients living with NF.

Meet NF Runner, Tim!

Timothy Gross, who has been running for the last seven years despite his hearing loss due to neurofibromatosis, will lead a charity race to raise awareness for NF this month.

Meet & Mingle - Join the NF Network Across the Country!

Our event chairs are hard at work preparing for an engaging events season. This summer and fall, we are excited to bring our new and long-running events to areas across the country. Our #NFStrong events and NF Hope Concerts are entering a new phase to bring excitement and community to our NF friends and families, and we look forward to having you join us!

Meet Sam Leary Award Recipient, Whitney!

Sam Leary was a close friend, a loving son, and a strong advocate for NF research - advocating for himself and the thousands living with NF. In his memory, in partnership with his mother Karen, we are proud to honor his life with the continuation of the Sam Leary Advocacy Scholarship Fund. Meet this year's recipient, Whitney.

Soundtrack of Silence: Love, Loss, and a Playlist for Life

Matt Hay's life changed with his diagnosis of NF2, but his life before and after the diagnosis is as beautiful and diverse as the soundtrack to a movie. Learn more about Matt's story and his experiences in loss and disability, as well as the beautiful love story of him and his wife, Nora.

Kids these days! They are so... Philanthropic!

While many high school students were busying themselves with football games and finding a date to the Homecoming dance, the students at Pocono Mountain West High School were prepping to memorialize a commendable classmate by raising funds for the Neurofibromatosis (NF) Network. Brianna Allison Rose Smith was an affable student who was diagnosed with NF shortly after birth. She always had a smile on her face and, “She was one the nicest people… the nicest person in the entire building.”

Meet Autumn!

Autumn's story of her NF journey recounted by her mother, Melissa.

"Team Angel Fish:" Remembering Jeff Balch

'I couldn't see very well and I was getting a lot of headaches," said fourth grader Jeff Balch. That was last fall, just before doctors discovered that a malignant optic nerve tumor was affecting Jeff's vision. "They told me if it got bigger it could destroy this eye," said Jeff, pointing to his right eye and sounding much older than his nine years. "I was a little nervous when I found out about the tumor, but not too scared."

"Team Angle Fish" Remembering Jeff Balch

In an interview with the NF Network, Caroline Hunt, Miss Madison County Iris Teen 2019, tells her NF story and how she's using her platform to raise awareness.

UW Madison NF Research Team Publishes New Findings

Funded in part by the NF Network, researchers with the UW Madison NF Research Team have published results of their ongoing research. Their current work offers several first-time insights into the microenvironment of mature NF1 tumors, revealing that certain existing drugs (including one used to treat another unrelated disorder) may be re-purposed to treat these tumors.

See Me: Portraits of Neurofibromatosis

Rachel Mindrup, paints portraits of individuals from across the United States and world with neurofibromatosis — a genetic condition that can affect the body in a variety of ways. Mindrup’s NF series is inspired by her son Henry’s NF diagnosis and was the motivation for this ongoing project. Learn more about Rachel and her new exhibit here.

First Pitch for an NF Warrior

Kyle Krawchyk is an NF Warrior and a Mahoning Valley Scrappers baseball fan! It was a special night when the Krawchyk family attended the game with Akron Children's Hospital and Kyle was able to throw out the first pitch. #KylesNFWarriors

NF Tennessee Joins the National NF Network

The work of the NF Network wouldn't be possible with ongoing support from friends, families, and organizations across the country making an impact on local communities nationwide. It is with great pleasure that we welcome NF Tennessee as an official Member Organization of the Neurofibromatosis Network!

Medford High team manager battling neurofibromatosis receives lift from game

Medford High's varsity basketball team manager, Jonathan Malerba, is making an impact on and off the court. Despite the challenges he faces fighting neurofibromatosis, Jonathan continues to pursue his love of basketball, and his team is here to support in any way they can.

Medford High team manager battling neurofibromatosis receives lift from game

Medford High's varsity basketball team manager, Jonathan Malerba, is making an impact on and off the court. Despite the challenges he faces fighting neurofibromatosis, Jonathan continues to pursue his love of basketball, and his team is here to support in any way they can.

Moms Rock: Melanie is a Mom on a Mission

Melanie Leach is the definition of strength and endurance. When her son Zac was diagnosed with neurofibromatosis, she immediately jumped into action to get the answers and care he needed, even as new medical curveballs were thrown their way. Seeking support and resources, Melanie found a home within the NF Network and continues to share her insight and story to support the Florida community and beyond.

Infixion Bioscience is Awarded Third NIH SBIR Phase 1 Grant to Develop Therapeutics for Neurofibromatosis

Infixion Bioscience, a pre-clinical drug discovery company focused on developing gene-targeted therapeutics for NF1, was awarded its third NIH grant. This new round of funding will enable Infixion to progress its drug discovery efforts targeted at correcting the amount of neurofibromin, a critical regulatory protein lacking in people living with NF1.

PEERS® for Adolescents

PEERS® for Adolescents is an evidence-based social skills intervention for motivated teens in middle and high school who are interested in learning skills for making and keeping friends, handling conflict and rejection. Led by the University of Wisconsin-Milwaukee and the University of Minnesota, researchers want to examine how PEERS® can be helpful for those with NF1.

New to Our Team: Meet Ashley Sola

It is our pleasure to introduce the NF Network's newest team member, Ashley Sola! As our Marketing and Event Coordinator, Ashley brings her passion for design and love for people to the role and is excited to plan a fun calendar of events for our NF community across the country. Please join us in giving her a warm welcome!

Being Different is Beautiful: Caroline's Story

Caroline Hunt has NF1 and actively participates in the pageant circuit. Using her platform "Being Different is Beautiful," Caroline has raised awareness for her genetic disorder and we need your help this NF Awareness Month to spread the word too.

"What's a mother to do with all the worry?"

Often times, the word "neurofibromatosis" isn't a word parents have heard until their child is being diagnosed with it. While Katie Sperring was familiar with the word neurofibromatosis, she was unsure what this diagnosis meant for the future of her son. Katie shares their NF journey and stresses the importance of continued NF research funding.

Meet the Advocate: Heather Marsden, PhD

The goal of the NF Network Advocacy Program is to educate and advocate for and with the NF community. As the program grows, we are ecstatic to welcome new advocates who are ready to share their voice in Washington D.C. Meet one of our newest advocates, Heather – mom to daughter Chloe who has NF1.

Magical Mila

Mila was diagnosed with NF1 at 2 months old. At a one-year follow-up of a previously detected heart murmur, Mila was also diagnosed with Mid-Aortic Syndrome and Renovascular Stenosis - very rare manifestations of NF that caused Mila to have extremely high blood pressure. In her memory, her parents share Mila's story and raise awareness for NF1 and high blood pressure in infants and toddlers.

"Medical Mom:" Meet Hilary and Crew

Crew Berens is an energetic, silly 7-year-old who loves Legos, swimming, and his dog Toby. Crew also has NF1 and a tumor they are closely monitoring and caring for. Crew's mom, Hilary, shares their NF journey and how even though they "can't fix it," they can still seek the best help and do everything in their power to help their "Crew Man."

Paying it Forward: Adam Rosenberg

As a college student with $7 to his name and with the selfless generosity of his dad's friend, Adam Rosenberg learned the important lesson of repaying kindness with kindness. Years later, following his son Max's diagnosis of NF2, Adam is putting this lesson into action and continues to find new ways to pay it forward.

Making an imPACt: Jenn Krawchyk

After her son's diagnosis with NF1, Jenn Krawchyk stepped into action. Educating herself and setting out to raise awareness of his rare genetic condition, Jenn founded the long-running #NFStrong 5K in northeast Ohio and found additional ways to share her knowledge and support with her community. As a result, Jenn joined the Parent Advisory Council for Akron Children's hospital.

Girl with prosthetic leg has special connection to Winter the dolphin

Ayden Wagler, recipient of the Paul Bodner Memorial Award at Chicago's 2nd Annual NF Hope Concert, shares a special connection with Winter the dolphin. In a recent trip to Florida, Ayden was given a special tour of Clearwater Marine Aquarium and shared how her story and Winter's are quite similar.

Paul Patterson: Living with NF2

Paul met his wife Jessie in college as she stumbled into the field of audiology. Little did they know that Jessie’s research subjects and time in graduate school would lead to Paul’s diagnosis of NF2. Their journey together has been a blessing, and they look forward to the future of NF research and what that could mean for their family.

Jillian and Crystal: No One Fights NF Alone

As a mom with NF1, Crystal knew there was a chance her daughter Jillian could also be diagnosed with this genetic disorder. Through medical challenges, Crystal has learned the importance of advocating for your NF care and is inspired every day by the strength of her daughter.

Keeping Hope Alive: Baylee and the GGG

Baylee Barradas is a fighter. Learning of her ongoing treatment against cancer and inspired by her perseverance, the Group of Gentlemen Golfers wanted to join in her fight and make a difference in her honor.

“Painting a New Portrait of NF:” Rachel Mindrup and Many Faces of NF

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.

Paul Mendelsohn, Longtime NF Advocate, Passes

Paul Mendelsohn worked tirelessly alongside his wife, Helen, as a pioneer in the NF2 community. A founder and the first president of what is now the Neurofibromatosis Network, Paul’s advocacy and dedication impacted our NF community nationwide. His legacy is his friendship with many and his inspiration to all.

Mikaela Bradley: Consumer, Advocate, and Neurofibromatosis Warrior

Living with NF1 has given Mikaela a new perspective on life. Through her experiences, she has learned to challenge herself and "live with NF on her own terms." Mikaela shares her NF story and insight in participating in the CDMRP-NFRP consumer review process.

Meet the Advocate: Niall Covington

The goal of the NF Network Advocacy Program is to educate and advocate for and with the NF community. As the program grows, we are ecstatic to welcome new advocates who are ready to share their voice in Washington D.C. Meet one of our newest advocates, Niall.

Helper Highlight: Meet the Helpers of the NF Network

Without the support of our NF community, the work we do wouldn’t be possible. We are grateful for the involvement of these members of our NF Network family and are inspired by the awareness and compassion they share every day.

The NFRP Supports the Future of NF Research with Several New Investigator Awards

Through the Neurofibromatosis Research Program (NFRP), New Investigator Awards (NIA) introduce new minds and insight to the world of neurofibromatosis research. Meet the new NIA researchers bringing novel concepts to the NF research community.

Meet the Doctor: Dr. Eniko Pivnick

Dr. Eniko Pivnick, lead geneticist at the NF clinic at Le Bonheur Children's Hospital in Memphis, Tennessee, shares inspirational news with the NF community and reflects on her years connecting with NF families.

What will come of Autumn? A girl, a disfiguring tumor and a clinical trial that offers hope

After a plexiform tumor began to grow on her daughter's face, Lyndsay enrolled Autumn in a clinical trial to help stop the growth and progression. In recent months, the trial has given the NF1 community and Lyndsay something that has long been elusive: proven results and hope.

Professor’s work illustrates potential of medical humanities for healing

For the last 10 years, Rachel Mindrup, MFA, has been using her talents to spread neurofibromatosis awareness through her Many Faces of NF oil portrait series. Now, for the first time, she will use her intersection of humanities and medicine as Creighton University's Deming Endowed Chair in Medical Humanities.

A Vital Perspective: Vito Grasso, Consumer Reviewer for NF Research

Neurofibromatosis (NF) is a unique and challenging disorder. Though NF has affected Vito Grasso's family in numerous ways, Vito has found hope and support through his advocacy work and involvement in the NF research review process.

Nate O'Dell: Living with Neurofibromatosis

Nate the Great” is an outgoing, sensitive 27-year-old young man. As an Eagle Scout and college graduate, Nate has overcome personal challenges that come with the diagnosis of NF1. Each day he works hard and lives life to the fullest, determined to overcome any obstacle in his way.

Long-Term Friendship and “Giving” Pennies

Staci Lewis and Carrie Wylie have carried their friendship online for several years after both of their children’s diagnoses with NF1. After an MRI for her son brought her to Memphis, TN, the Lewis family finally met their friend Carrie and had a little surprise of their own to share.

Gutmann Receives Advocate of Hope Award

The Advocate of Hope Award is presented to an individual or company, whose contributions have made a significant difference in the lives of those living with neurofibromatosis. Dr. David H. Gutmann of the Washington University NF Center was honored for his dedication to finding causes and treatments for neurofibromatosis.

The NF Network Coffee Chat Must Go On

Neither virus, nor tornadoes, nor other unforeseen circumstances could stop the NF Network from hosting our Mississippi Coffee Chat. Even under these conditions, we worked alongside DeAnna Atkins to turn this event into a great opportunity to build community.

Announcement: FY21 “Dear Colleague” Letter Signers

Through the hard work of the Neurofibromatosis Network Advocacy Program and with the continued support of our NF community, the NF Network is proud to announce the FY21 “Dear Colleague” letter signers and thank our members of Congress for supporting this crucial step in neurofibromatosis research funding.

Mother Fights to Treat Her Family’s Rare Disorder

Amelia and Peter Nobis were both diagnosed with Neurofibromatosis type 2, a rare disorder that causes tumors to grow along the nervous system.

Woman with Benign Facial Tumor Embraces Her Differences and Becomes Makeup Artist

Rhonda Manring was told by doctors they couldn't remove the tumor growing on her face. The confident 27-year-old reveals how makeup has helped her to embrace her condition.

Hearing Loss to Hearing Recovery: My Detour Filled Journey

Approximately 466 million people worldwide experience some level of hearing loss — and I was now one of them.

A Special Christmas Gift

A special Christmas gift from Secret Santa for a father and his daughter who just had brain surgery.

Remembering Sam

We are forever fortunate, and the world is a better place, for the bright mind and beautiful spirit of Sam Leary, who left us so young. In memory of Sam, the NF Network is proud to announce the Sam Leary Advocacy Scholarship Fund to assist our NF Advocates and to continue the critical work that has been Karen and Sam’s passion.    

Pageant Queen Has An Unwaveringly Resilient Spirit

Pageant queen, 22, who was born with tumors all over the left side of her body is diagnosed with cancer and has to undergo agonizing surgeries that have left her unable to walk or talk.

The Power of Being Different

It’s not always easy to see what your superpower is...I consider myself lucky to be able to say that Neurofibromatosis is my superpower and I am proud of it.

Not only a gifted neuro-oncologist. . .

Dr. Herbert Newton, who is not only a gifted neuro-oncologist and the Director of AHMG’s Neuro-Oncology Center, but also a skilled bass guitar player.

"Being Different is Being Beautiful"

In an interview with the NF Network, Caroline Hunt, Miss Madison County Iris Teen 2019, tells her NF story and how she's using her platform to raise awareness.

Living with NF2: Abby’s Story of Brain Tumors, College & Accessibility Advocacy

Patient Abby Loden contributed this post. She lives in Mississippi and does disability and NF2-related volunteer advocacy work.

Gregg Erickson: My Perspective as a Neurofibromatosis Parent and Advocate

Gregg is a parent of a child with NF who has not only helped his own child but the NF organization as a whole.

Hi, my name is Emily R. Adkins and I have NF1

I’m sharing my story of never letting anyone or NF stopping me from my dreams and I hope more people with NF and other health and learning issues don’t let anything stop them for achieving their dreams.

Assistant Manager Inspires Dunedin High Baseball Team

Tyler, or "Tyno" as he's known around Dunedin High School, is an assistant manager for the Dunedin Falcons. He was born with neurofibromatosis, a genetic disorder that causes tumors to form on nerve tissue. Last month, he underwent surgery for a brain tumor. 

Buono Receives DoD Grant to Study Mobile Phone Application for NF1

Dr. Frank Buono of Yale Psychiatry has been awarded a 3-year grant from the Department of Defense to evaluate whether a mobile phone application can reduce pain in adults with NF1. 

Michigan Governor's Fitness Award Finalist

Michigan Governor's Fitness Award Finalist - Gregory Barnier with NF2

A Center of Excellence & Hope for NF Patients

Dr. Listernick will receive the coveted 2019 Advocate of Hope Award on Sunday, April 7th, 2019 at Chicago’s 2nd annual NF Hope Concert.

Living with the anxiety of having a child with NF

A letter written by Jessica Jemente about having a child with NF and the anxieties that come along with it.

Take a deep breath & have faith that everything will be ok

A mother steps out of her comfort zone with the need to let go and share her emotions on Facebook of her daughter's journey of living with NF.

Gus and His Make-A-Wish Trip To Hawaii

The Ericksons were visited by two Make-A-Wish volunteers—“wish makers”—who came to their home to interview Gus to see what his wish would be.

Therapy Dogs Bring Smiles and Laughter

The furry friends of the Sit Means Sit & Go Team brought nothing but joy and happy memories to the Boardman, OH walk.

Living with NF1: Jeff Colatruglio

My name is Jeff Colatruglio, I am 32 years old and this is my life.

People shouldn’t let anything hold them back

Losing a leg has not stopped 16-year-old Melody Walker from achieving any of her goals.

Michelle Hirsch Donovan: Taking Control of NF

Riley has completed seven Coast to the Cure NF Bike Rides and has personally raised nearly $112,000 for NFNE.

NF NE director named MNN award finalist

The Massachusetts Nonprofit Network recently announced Karen Peluso has been selected as a finalist for the 2018 Nonprofit Excellence Award in Leadership.

Cole Rutter: What I Can Do

The Inaugural Chicago NF Hope Concert presented the Paul Bodner Memorial Award to Cole Rutter. Read his acceptance speech.

Advocating for NF research — 30 years and counting

Karen Peluso became involved with the NF community when her daughter Mia underwent surgery to remove a very large and destructive plexiform tumor in her abdomen caused by NF1.

Refusing to let disease define you

A week before her 16th birthday, Catherine Richardson had her left arm amputated. Despite the challenges this has caused, she has not allowed NF to define her.

Miss Teen Minnesota hopes to inspire others

Grace Grell, who has neurofibromatosis type 1, hopes to inspire others as Miss Teen Minnesota.

Parents raise 10k for son’s genetic disorder

When Belmont residents Amy and Scot DeDeo learned their son, Nat, had Neurofibromatosis, they didn’t waste any time.

Special day for 9-year-old Maddox Smith

Getting the chance to be a Kid Captain this season means a lot to Maddox and his family. The Kid Captain program started in 2009 as a way to honor pediatric patients and celebrate their stories.

Coach selects teen with brain tumors as manager

Ryan Hauck, who has three inoperable brain tumors, is living out his dream to play basketball thanks to a supportive coach and teammates.

People helping people

In 2013, Jenn Krawchyk, the mother of a young boy, Kyle, with NF1, from Boardman, OH, called the NF Network looking for a way to connect with people with NF in her area and raise funds for NF research. Four years later I find myself in Boardman Park, early on a Saturday morning with a gentleman named “Ron Maxwell, like the coffee.”

NF mother on a mission

Melanie Leach raises NF awareness by organizing walks and bake sales in addition to traveling to D.C. each year to meet congressional staff.

Contributing to health care reform

Beverly Oberlander, a patient advocate for Neurofibromatosis California, recently participated in a roundtable discussion on health care reform with U.S. Representative Pete Aguilar.

Racing for a cure

Ashley Ihry decided to raise awareness for neurofibromatosis by dusting off her running shoes.

Family helps Pennsylvania woman raise thousands

Yonairis Smith raised more than $2,000 with the help of a team of 20 family members and friends.

One woman’s passionate pursuit to cure NF

Tricia Ratell has worked tirelessly to raise NF awareness and funds to combat the disorder.

UAB clinic provides support for NF families

The NF Clinic at the University of Alabama Birmingham provides diagnosis, genetic testing and counseling, long term follow-up, and management of NF-related problems.

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