Children's Tumor Foundation

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. #NoNFNovember, #EndNF, #Neurofibromatosis, #ChildrensTumorFoundation, #NFResearch, #MakeNFVisible, #NFHeroes, #NFCommunity, #RareDisease, #CTF, #NF, #HopeForACure, #NFWarriors, #NF2, #NF1, #ShineALightOnNF

#NoNFNovember This post is part of the #NoNFNovember campaign to raise awareness and funds to end NF. Follow along here every day at 4pm ET for a new post and new story. ***** 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 ***** This post is part of the #NoNFNovember campaign to raise awareness and funds to end NF. Please repost this story by clicking the button below to “Repost”, and encourage everyone you know to look for a #NoNFNovember post here every day at 4PM ET, and visit www.ctf.org/nonfnovember to contribute what they can to end NF. All funds raised in this campaign will go directly to Children’s Tumor Foundation and the fight to end NF. #NoNFNovember, #EndNF, #Neurofibromatosis, #ChildrensTumorFoundation, #NFResearch, #MakeNFVisible, #NFHeroes, #NFCommunity, #RareDisease, #GeneticDisorders, #HopeForACure, #NFWarriors, #NF2, #NF1, #ShineALightOnNF

#NoNFNovember This post is part of the #NoNFNovember campaign to raise awareness and funds to end NF. Follow along here every day at 4pm ET for a new post and new story. ***** 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. 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. 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-Ketcha Ngassam ***** This post is part of the #NoNFNovember campaign to raise awareness and funds to end NF. Please repost this story by clicking the button below to “Repost”, and encourage everyone you know to look for a #NoNFNovember post here every day at 4PM ET, and visit www.ctf.org/nonfnovember to contribute what they can to end NF. All funds raised in this campaign will go directly to Children’s Tumor Foundation and the fight to end NF. #NoNFNovember, #EndNF, #Neurofibromatosis, #ChildrensTumorFoundation, #NFResearch, #MakeNFVisible, #NFHeroes, #NFCommunity, #RareDisease, #GeneticDisorders, #HopeForACure, #NFWarriors, #NF2, #NF1, #ShineALightOnNF

#NoNFNovember This post is part of the #NoNFNovember campaign to raise awareness and funds to end NF. Follow along here every day at 4pm ET for a new post and new story. ***** 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 ***** This post is part of the #NoNFNovember campaign to raise awareness and funds to end NF. Visit www.ctf.org/nonfnovember to contribute what they can to end NF. All funds raised in this campaign will go directly to Children’s Tumor Foundation and the fight to end NF. #NoNFNovember, #EndNF, #Neurofibromatosis, #ChildrensTumorFoundation, #NFResearch, #MakeNFVisible, #NFHeroes, #NFCommunity, #RareDisease, #GeneticDisorders, #HopeForACure, #NFWarriors, #NF2, #NF1, #ShineALightOnNF

#NoNFNovember This post is part of the #NoNFNovember campaign to raise awareness and funds to end NF. Follow along here every day at 4pm ET for a new post and new story. ***** 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 ***** This post is part of the #NoNFNovember campaign to raise awareness and funds to end NF. Please repost this story by clicking the button below to “Repost”, and encourage everyone you know to look for a #NoNFNovember post here every day at 4PM ET, and visit www.ctf.org/nonfnovember to contribute what they can to end NF. All funds raised in this campaign will go directly to Children’s Tumor Foundation and the fight to end NF. #NoNFNovember, #EndNF, #Neurofibromatosis, #ChildrensTumorFoundation, #NFResearch, #MakeNFVisible, #NFHeroes, #NFCommunity, #RareDisease, #GeneticDisorders, #HopeForACure, #NFWarriors, #NF2, #NF1, #ShineALightOnNF