Together with our friends at Modern Giving Foundation and Modern Executive Solutions, the Children’s Tumor Foundation is igniting a movement for better treatments, faster results, and a world without NF. Throughout November, we’re raising awareness, sharing stories, and inspiring action to make NF history – posted on LinkedIn daily at 4 pm ET and shared with the #NoNFNovember hashtag.
Below are each of the stories from the campaign, from patients, families, and advocates who are driving change for NF.
Jake Burke
When Jack was first diagnosed, we had no idea what road was ahead for him or for us. Some 16 or 17 years later that really hasn’t changed. Like many NF patients and their families, the road behind us has been paved with heartache, disappointment, fear, small triumphs, and many lessons. We have been fortunate to be impactful with the founding of CureNFwithJack many years ago to reach $1M raised for research by the time Jack graduated high school. We did that and more as we now approach our fourth million!
Jack has led the way through all of it with his willingness to give of himself literally and figuratively, whether on a small stage at pre-school or in front of hundreds of conference attendees or scores of supporters at one of his THIRTY-FIVE events these past 12 years. Make no mistake…I hate that he has NF but NF does not have him because of his tenacity and courage.
There is no way to enumerate all of the challenges, both physical and otherwise that Jack battles daily but we will help him to continue to fight for himself and others, so we hope to someday.
Years ago I started to blog about Jack’s Journey, which you can access at https://lnkd.in/gwVZ3tpy They are in some sort of chronological order but are written such that they do not need to be read that way. If you choose to look at them, I hope you find both hope in the passages but also take pause at the seriousness of what many, many NF patients and families face. I’ll end with how I end all my blog posts.
Tomorrow, there is hope, and YOU are among the reasons why. Don’t ever forget that. EVER.
Jake Burke
Laura Grannemann
NF – often referred to as “the most common rare disease you’ve never heard of” – is
a genetic disease that causes tumors to grow on nerves throughout the body. Currently, there is no cure, but the Children’s Tumor Foundation and Gilbert Family Foundation are actively working together to change that.
This is incredibly personal for us. Dan and Jennifer Gilbert’s son, Nick, was born with NF1. Nick faced innumerable obstacles over his 26 years, but he faced each with a sense of humor and kindness. Though he passed away in 2023, his optimism and passion inspire our work each day.
Laura Grannemann
RB Harrison
10 years ago our then 10 year old son was having headaches; we thought it was something as simple as an ear infection. At eight o’clock in the evening our Pediatrician called and told us to urgently come to her office.
She had the MRI image from that day showing a 5 CM tumor bending his spinal cord like an S. She had already made arrangements for us to go to Columbia Presbyterian children’s hospital. 48 hours later after 12 hours of brain surgery the tumor was gone, and he could walk and talk normally.
Miracle delivered – or so we thought. Instead we were introduced to the diagnosis of Neurofibromatosis & all its potential issues including loss of hearing, balance, swallowing, & even death. Our bright, kind, funny, thoughtful, absolutely outstanding boy had tumors on his auditory & spinal nerves.
RB Harrison
Eunice Lee
I was diagnosed with neurofibromatosis (NF) 1 as a young child after I noticed small neurofibromas on my arm. Although I thankfully had no major symptoms growing up, things changed in my late teens.
At 19 while in college, scans and checkups led to a moyamoya syndrome diagnosis, a rare condition of NF1 that narrows arteries in the brain. With brain surgery, an artery bypass, being the only treatment, I swiftly withdrew from college, went through with the surgery, and embraced my newly shaven head along with a large scar. A year later, I returned to school, graduated in 2019 with my BA, and completed incredible internship opportunities at the US EPA and the United Nations.
At 24, surgery to remove neurofibromas led to a diagnosis of a malignant peripheral nerve sheath tumor, a type of cancer associated with NF1.
Although the tumors were successfully removed, I was left with nerve pain and scars on my arm. Less than a year after my surgery, I began working in consulting, where I have had significant professional growth. I collaborate with agencies on community outreach, public involvement, and stakeholder facilitation processes across energy and climate sector projects.
I am forever grateful to all my doctors who have diligently helped manage my NF and to my family and friends who have given me unwavering love and support. They have taught me to be diligent, advocate for myself, and stay positive during the struggles and uncertainty that NF brings.
While my NF is not outwardly visible, my scars tell a story of resilience through hardship. My NF journey, though far from what I ever expected, has shaped me into the person I am today. I’m proud to serve on the CTF Junior Board and several other committees to raise awareness and advocate for NF.
Eunice Lee
Lindsey Marson
In April of 2022 I welcomed my son to this world and a few short weeks later we
would send him off into an MRI to check out why his eye had been swollen since birth. A plexiform tumor is what was revealed. Complex, and wrapping itself like a spider web around his eye, face, jaw and part of his brain. At that time, he was 4 weeks old so we just had to wait and see what happened.
I went back to work and a couple weeks later he had a second MRI which revealed the tumor was growing and we needed to take action. I left my career and devoted my life to taking care of my son.
Since then, he has had countless doctors’ appointments, 11 MRIs, two eye surgeries, has been in a clinical trial, and many, many therapies.
I myself also have NF and although it presents itself a lot different in me, being a mom, especially to a medically complex baby, really taught me the importance of keeping up with my own health. I’ve participated in clinical studies, research calls, and volunteer with Shine a Light NF Walk and the Seventeen22 Foundation.
To say these last two years have been a whirlwind would be an understatement but there has also been many blessings including Bryson’s third stable scan in a row, just last week!!!
My hope is that one day we have a very effective treatment and cure for NF.
Lindsey Marson
Dan McAvoy
I was a NF Mentor from July 2016 – February 2022, and in that time, I was able to
understand what it was like to be a voice or even a leader and lead by example, such as strategizing to leading a virtual camp during a global pandemic. It helped open my eyes for helping others who also have NF and how we all have NF but it is different for everyone.
Then I was given the opportunity to join the Junior Board in November 2019, I saw this as an opportunity as a point of growth for me with volunteering and taking the next step to help professionalize myself for the next chapter in life as I was also just about to graduate college. The Junior Board has been an experience as I have worn multiple hats from being on the patient outreach team as a committee member, assistant director and even director to being their treasurer for the past 2 years and it has been a good insight over the years and seeing all the the NF youth can do!
Dan McAvoy
Ted McGee
Every parent sees their little girl as an angel.
That is no different for our family. As new parents, we cherished every little giggle, smile, attempt at creating words…. she was/is our whole world.
Gracie was born with a rather large birthmark on her torso. We just considered how we would have to deal with that as she got older. A “cosmetic” concern that she will be horrified with through her teen years. Jeanette and I agreed, we will just show her that it’s a mark of her superpower!
Little did we know that those superpowers would be needed to fight NF.
When more café au lait spots appeared, we thought, “you’re born with birthmarks, they don’t appear over time.” Right?
Gracie was 4 months old. We were new parents and there were nearly a dozen birthmarks on her back that were not there a few days before. A google search and a few clicks later, the word neurofibromatosis entered our vocabulary
Words like “genetic disorder”, “lisch nodules”, “nerve sheath”, became part of our lexicon and part of our drive to know all we could about this condition and what was being done to address it.
Our pediatrician quickly made a referral to Children’s Hospital of Atlanta (CHOA) and their Neurofibromatosis clinic. We had to wait a painstaking 2 months before we could get an appointment and confirmation of diagnosis. But our journey had already started and it will never end.
At 3 years old, our daughter is doing all the things she should as a “threenager”. She has hit her developmental milestones on time and amazes us every day. Aside from birthmarks, she’s telling NF who is boss. But we are well aware that any day new symptoms can present. All NF parents are riddled with these “what if” and “when” fears.
While we didn’t choose the NF Community, we have found a tribe of advocates. A lifeline of sorts that strives every day for more information, more progress, and in the end, a true cure to a disorder that has for too long been ignored and under the radar. The advancements we have seen in medical technology over recent decades have put us on the precipice of a curative opportunity, but we need more. More awareness, more understanding, and in the end more action to ensure that all NF heroes have the opportunity to live their lives free of limitations!
Ted McGee
John Morris
I’ll always remember the panic, fear, hysteria.
I held my toddler son in my arms, his body shaking violently while I raced down the stairs to the arriving ambulance. After placing him in the hands of the EMT my wife jumped in with Jack and I followed in the car with the rest of the kids.
The full body seizure lasted an hour, the diagnosis a lifetime. After brain and hand surgeries successfully removed two tumors, we learned of two more deep inside between inner ear and brain stem.
He had NF2-related schwannomatosis, tumors growing on his nerves. The out of town brain surgeries required extended trips to the west coast for risky procedures that deafened one of his ears. The MRIs revealed a pattern of tumors riddled throughout his spine and brain stem. They are monitored regularly for signs of growth and the possibility of future surgeries. The tumor on his bicep was surgically removed only for another to be found in his wrist shortly thereafter.
He often describes the “zingers” that race through his nerve fibers like an electric shock. It is a part of his life and our family’s life. Like a nightmare we put it out of our thoughts praying it will never recur, but the tumors continue to grow.
The Children’s Tumor Foundation will find a cure. Please help.
John Morris
Roger Ngassam
Why We Must Find a Treatment or Cure for Neurofibromatosis (NF) #EndNF
NF is a complex genetic disorder that affects millions of people around the world, leading to unpredictable and often severe health challenges. Finding a treatment or cure is not just a scientific goal, but a necessity for the countless families whose lives are impacted daily. Moreover, I believe that discovering a cure for NF could help unlock solutions for other diseases that currently have no treatment. The potential ripple effect of NF research could open doors to breakthroughs in multiple areas of medicine, benefiting even more people in need. No ONE should be left behind.
Why I Joined the CTF Board
I joined the Children’s Tumor Foundation Board because I believe in the organization’s mission and its ability to serve as a driving force in the NF research landscape. CTF is more than just an organization—it is a group of passionate individuals who will continue to strive relentlessly until we find a treatment or cure. I have made this fight a personal purpose after NF crossed my path, I believe everyone should have the right to dream of a bright future, free from the limitations of diseases like NF. My dream is that one day, CTF will no longer be relevant, because a treatment or cure will have been identified. Until then, CTF’s collaborative approach is key to unlocking new discoveries. Time, Money and Science will be instrumental in achieving our goal.
How NF Affects Me and My Goals
NF has become an area of deep personal and professional commitment for me. With my background in science and my connections in the life sciences, I am determined to leverage every opportunity to push forward the research needed to find answers. Through my role at CTF, I hope to contribute to the foundation’s goals by facilitating collaboration, advocating for advancements, and driving the momentum we need to move closer to treatments and, ultimately, a cure.
Roger Ngassam
Mark Oppenheimer
At the midpoint of #NoNFNovember, I feel compelled to share a glimpse into what
this month truly means for families like ours. Thank you to everyone who has reached out; your support is invaluable, and I hope this post helps illustrate the reality that so many face every day.
Our daughter Riley is just three years old and has already endured seven MRIs in the past 18 months. Recently, we learned she will likely face challenges with having children someday due to a tumor in her reproductive area. And we still don’t know where else tumors may be hiding on her scans.
Living with this disease is unimaginable. It is relentless, exhausting, and never-ending. Every day is filled with fear. As a parent, I grapple with fears I can’t even admit out loud. I’m ashamed to say that I unconsciously try to hold back part of my heart, scared of loving too much, knowing that tomorrow is never guaranteed. The silent guilt of hiding things from our child weighs heavy, while we are fully aware that fear and uncertainty will shadow every day of our lives.
Then come the impossible conversations: explaining to Riley why she’s in the hospital when other kids are not, rationalizing to myself over and over that it could be worse, and convincing myself that everything will be okay. But deep down, all I really want is for Riley to be healthy and to see her grow up free from the obstacles and pain that no child should have to endure. No parent should every have to bury their child.
I love my daughter with every ounce of my being, and I pray every day that somehow, this will all go away. Millions of children and parents deserve a future free from NF. Please help us raise awareness.
Mark Oppenheimer
Emily Parker
Throughout my career on Wall Street, and nearly every day since my first job, I’ve watched and listened to the NYSE opening bell. I often wondered if I’d ever have the chance to stand on that iconic podium to cheer on the start of a new trading day.
That dream became a reality this past May. What made the moment even more extraordinary was the opportunity to do it alongside the Children’s Tumor Foundation (CTF). On that day, the NYSE team reminded us that millions of people worldwide would watch the opening bell and see CTF highlighted on their screens.
Through my involvement with Cupid’s and CTF, I’ve had the privilege of meeting countless inspiring individuals united by a shared mission: to end neurofibromatosis (NF). NF can sometimes be visible, but often it’s not. What remains consistent is its unpredictability, leaving those affected in a constant state of “waiting for the other shoe to drop.”
As a proud CTF board member, my goal is to raise awareness, advance treatments, and help drive progress toward a cure.
With that, I invite my friends, colleagues, and LinkedIn network to join me in supporting this vital cause—whether by reacting, commenting, reposting this message, learning more about CTF, or getting involved. Together, we can make a real difference.
Emily Parker
Christine Panza
Being someone who doesn’t accept failure, who is determined to never break, and let’s face it, is quite stubborn, the hardest thing is accepting that no matter how hard I try, no matter how determined I am, I will never be free of the scars NF has and continues to create. Now, I could take this as a reason to give up, but why? I’m resilient, remember? This means that no matter the challenge or how hard I must work, nothing can stop me. All my life, I’ve lived by setting goals, and since my diagnosis at age nine, that hasn’t changed. What has changed is how strong I am, how willing I am to adapt, and my ability to stand up after falling (which, with my ambitions, happens a lot).
When I started high school, all I dreamed about was my future successes: being accepted into my dream college, going on to obtain my master’s degree, and eventually my PhD. What I didn’t expect was participating in a clinical trial my sophomore and junior years, or the two brain surgeries I had during my senior year. Well, I think we can all agree that is pretty unfair, but I was unwilling to give up; determined to show everyone that the girl they thought would never make it to college the next year would do so, going on to graduate at the top of her class with the dream of studying NF2. Fast forward to now, 2 brain surgeries later, newly deafened and facing a new reality of silence. Despite this, that same girl is soon to graduate with a master’s degree with hopes of pursuing a PhD in the future. Two goals I’ve had and NF didn’t stop me… and it never will.
Christine Panza
Kim Robinson
Raising a Child with Neurofibromatosis: A Journey of Fear, Determination, and Hope
When my son Blake was diagnosed with Neurofibromatosis Type 1 (NF1) at just 18 months old, I was thrown into a world I had never heard of before. This rare diagnosis came as a complete shock, and with it, a wave of fear and uncertainty. My sister, who happened to be Blake’s pediatrician, guided us to the specialists who confirmed the diagnosis, and I found myself urgently seeking the best care team to support him.
Over the years, I’ve had to respect Blake’s privacy and let him choose when and how to share his own story. But my own story as a mother is one of fear, frustration, and ultimately, resilience and hope. This journey led us to the Children’s Tumor Foundation (CTF), which has become our anchor for over two decades. In recent years, the progress and hope that CTF has brought into our lives have only strengthened my commitment to ending NF.
Now, more than ever, I believe it’s time for NF to become a well-known cause, one that gains the recognition needed to drive research, awareness,
and—one day—a cure. The time is now to develop new treatments. The time is now to stop the pain. The time is now to End NF.
Kim Robinson
Sarah Grace Rodbell
My name is Sarah Rodbell, and I have NF1. I face challenges every day because of
NF, but I don’t let it bring me down. I’m an avid runner and have proudly completed 10 half marathons, with no plans of stopping anytime soon. I will be running te NYC Marathon in 2025 for CTF as well!
Having NF has given me hope and strength to push through adversity, proving to myself and others that no obstacle is too big to overcome. I strive to live life with purpose, embracing each challenge as an opportunity to grow stronger. Because of NF I have such a deep pride to help others and find a cure to end this disease that has taken too many of my friends.
Every time I lace up my sneakers, I know I am one mile closer to ending NF.
Sarah Grace Rodbell
Kenneth Rudd
Forty odd years ago, my mother, who was then the president of what became the Children’s Tumor Foundation, asked me to write a letter to the Foundation in connection with a donation I was making from money I had been given for my Bar Mitzvah. That letter, as best as I recall, was published in the Foundation’s newsletter.
I was reluctant to speak out publicly. As a child and young teen, I did not want NF or my disabilities to define me. I did not want people talking about me and the disorder that caused my disabilities and my disfigurement. I didn’t want to think about or focus on the risks that I faced as I grew. I did not want to talk about my health problems publicly. But I made the donation; I wrote the letter; I listened to mom.
Now, decades later, I am not only happy to discuss NF, but I am honored to serve on the Board of CTF and devote my time and professional expertise to grow CTF, to raise money, to expand research and to do everything I can to help find treatments and a cure. Doing that will (I hope) benefit me, but much more importantly it will benefit all people with NF, both children and adults.
We can make a difference. We can do it now. It takes time, expertise, commitment and yes, money. With the help of the amazing Children’s Tumor Foundation and its commitment to the best science, research and clinical care, we can find treatments. Maybe we can even find a cure. My teenage self would be thrilled.
Kenneth Rudd
Leanna Scaglione
My involvement with the NF community and Children’s Tumor Foundation started
later in my diagnosis journey. For a long a long time my NF was invisible, making it very easy for me to ignore it and not be questioned about it. But life has a way of making things happen at just the right time. The past two years have brought major changes to my NF. In the fall of 2022 I started my third drug trial. But this trial was different. It was the first trial I really needed to work, or it meant surgery.
A few months prior to starting the trial is when I found out about NF Endurance. It was back in March 2022 when I was running the NYC Half Marathon. It was my first ever half marathon ever and it was during this half marathon that I discovered NF Endurance. Around mile 4 I saw up ahead of me another running wearing a blue shirt with a giant white square that said “End NF” on the back. I started to cry. It was the first time in my life I saw someone else who was aware of NF in such a public setting. When I realized the runner was running for CTF, I knew I needed to run with them for any race I could in the future.
As life would have it, my third drug trial did not work and I had my right vestibular schwannoma removed in January 2024. A surgery that left me completely deaf in my right ear and with facial paralysis. A surgery that made my NF completely visible for the first time ever.
Needless to say it’s been an extremely emotional journey since that surgery, but I know for a fact it was made easier by having my NF community behind me. It was with their support I have been able to push through this time in my life and keep going. Any chance I run, it’s not just a run for me, but a run for the NF community to show that nothing can stop us.
Leanna Scaglione
Monica Sohn
As the Chief Growth Officer at the Children’s Tumor Foundation (CTF), every day I’m reminded of the resilience and hope that define our community. But today, I want to share a more personal angle on why our mission to cure Neurofibromatosis (NF) is close to my heart.
NF is a daily reality for 4 million children, adults and families around the world. It’s the reason why a child might face countless MRI’s, surgeries, profound pain and unexpected challenges, as well as moments where their bravery outshines their fears. I remember meeting so many of our NF heroes, their parents and grandparents at our patient summit last April, who despite their struggles, greeted life with gusto.
Their determination to not let NF define them filled my heart and taught me so much about strength and courage. It’s these beautiful people that fuel my commitment. Curing NF isn’t just about eliminating tumors; it’s about giving children, adults and families the freedom to dream without limitations. It’s about ensuring that no parent has to hear the words “there’s nothing more we can do.” It’s about hope, and it’s about action.
I am incredibly proud of the strides we are making at CTF together with the unshakeable support of our community, doctors, scientists, and partners. But we need more voices and more support to create a future where NF is no longer a part of anyone’s story. Together, let’s continue to push boundaries and bring hope and new treatments to those who need it.
Thank you for being a part of this journey. 💙
Monica Sohn
Richard Soll
Why We Must Rid the World of NF:
Neurofibromatosis (NF) is a genetic disorder, one of the more 7,000 rare diseases, that affects 1 in every 3,000 individuals globally, yet it remains largely under-recognized by the public and healthcare communities alike. NF can cause tumors to grow on nerves throughout the body, leading to pain, disfigurement, neurological complications, and in some cases, life-threatening conditions like cancer.
Innovation & Urgency:
Advances in medical research and biotechnology give us hope. From gene therapy to targeted treatments, we now have tools that can turn the tide against this debilitating disorder. But it requires commitment — an effort from researchers, companies, and governments to prioritize NF and fund the fight.
Why Now:
We live in an age of breakthroughs in personalized medicine and genetic editing. This means the potential to not only treat but cure NF is within our reach. Waiting isn’t an option for the thousands of families whose loved ones are affected every day.
What Can We Do?:
1. Advocate for more research funding.
2. Support those living with NF by raising awareness.
3. Partner with innovators in the life sciences industry to develop next-gen treatments.
Ending NF isn’t just a medical challenge—it’s a social one. Together, we can change the lives of millions and rid the world of NF once and for all.
Richard Soll
Connie Sorman
I’m not here to share my son’s story of living with neurofibromatosis. Jesse’s an
adult and his story is not mine to tell. But I have my own story. Mine is the story of a mother who raised a child and supports an adult living with NF1. My story is about advocacy on many levels, unabashed fundraising, spreading awareness however possible, and most importantly, unyielding hope.
Four years ago, I called for urgent action after the FDA approved Koselugo, the first-ever NF1 treatment for kids. Today, my hope and commitment are stronger than ever, fueled by real progress.
Since 2020, NF research and treatments have surged. A second drug for NF1 is nearing FDA approval, a cream for skin tumors is in phase 3 trials, and advanced biomarkers are transforming diagnostics. The first NF2 platform trial is expediting drug discovery, with AI and gene therapy on the horizon.
We are closer than ever before and because of that, The Time is still Now, it will be that time until the day comes when mothers, fathers, grandparents, families, and friends of those who so courageously fight this battle can live out their days free from the fear and anxiety of not knowing what’s next. I am forever hopeful that my son will know a life like that one.
Connie Sorman
Brianna Worden
My journey with Neurofibromatosis (NF) began when I was diagnosed at just two months old. I have spent my life undergoing numerous surgeries to prevent tumor growth, paralysis, and cancer. Early in my childhood, doctors told my family that I would likely not live past the age of seven. These words, though unimaginable, became a part of my reality. Yet, I continued to defy the odds placed before me.
In March 2013, I faced cancer (a malignant peripheral nerve sheath tumor) for the second and third time. While the tumors were successfully removed, the surgery paralyzed my vocal cords. The doctors’ prognosis echoed again in my life: “You probably won’t be able to talk normally, eat solid foods, and you won’t be able to sing.”
For someone whose life had been rooted in public speaking and musical theater, this news was devastating. My voice, my passion, and a core part of my identity were taken from me. It felt like I was losing myself. But I refused to give up. With the relentless support of my family, I embarked on six months of speech therapy. By September of 2013, I regained my voice. Although my left vocal cord remains partially paralyzed, I am able to talk, eat solid foods, and sing—things that once seemed impossible.
Had someone told me then that I would be a three-time cancer survivor and someday be using my voice to advocate for NF and inspire others, I would not have believed them. Today, as Miss Empire State International, I am proud to use my story to broaden beauty standards and show others that resilience is its own form of strength and beauty.
To the incredible team of doctors who helped me reclaim my voice, and to my family who stood by me every step of the way—thank you. You gave me hope when it felt out of reach. Thank you to everyone who has supported and believed in me. 💙💚 LetsEndNF
