The Children’s Tumor Foundation unveiled its 2024 portrait collection, “Make NF Research Visible.” Through captivating imagery and compelling narratives, this collection shines a spotlight on the critical importance of visibility on NF research, ultimately uniting us in the pursuit of progress and support for those touched by NF.
Owens Family
Hear why Diane Owens says making NF research visible is important to her son Alex, who lives with neurofibromatosis type 1, and their whole family.
Why is it important that we make NF research visible?
As volunteers, we work tirelessly year-round raising funds for research. Inevitably, we find ourselves begging the same donors year after year for continued support. We need to be able to illustrate where donor dollars are going. We need to articulate the impact their generosity is having on the NF community, and we need to quantify the value of their donations in real-life, related terms.
What is your dream/hope for NF research in the future?
My dream is for NF research to become such common knowledge that its progress is discussed at neighborhood dinner parties. I want to see the groundbreaking progress reported on the evening news. One day I want to sit with my family and friends and laugh about the past saying, “Remember when our only option was to ‘watch and wait’? A doctor would never even THINK to say something like that today. It’s so crazy to think that was once our world.”
What is “cool” about NF research?
The coolest thing about NF research is the endless possibilities: oral meds, topical creams, STEM CELL RESEARCH. We have nowhere to go but up, and in the past 10 years, despite a global pandemic that brought the world economy to its knees, we have seen the floodgates open with a tidal wave of information, knowledge and leads to improve every aspect of NF from diagnosis, treatments and root cause analysis. It’s mind-blowing. However a very close second place winner of “cool NF research facts” is the impact we have on thousands of other disorders and diseases. The outcome of our research- whether it’s deemed successful for NF or not- is having a trickle-down positive impact on the research and treatment options of thousands of other disorders, many of them rare as well. We are not only positioning hope for the NF community, but we are also empowering the broader world forums affected by rare disorders and diseases.
When you received Alex’s diagnosis, did you have options? Has that changed (how has research impacted your treatment and care)?
When my 4-month-old son was diagnosed with NF1, his dad and I were told, “There’s nothing you can do but watch and wait. Don’t Google it.” Our geneticist was a great doctor and a nice guy. He is both skilled and competent, but the reality was- there were no options to be proactive; no diagnostic tools to set our expectations of severity, no special diets, vitamins, or supplements proven to reduce risk or improve quality of life, nothing but a few, small potential trials that had low expectations of success. And so, day after day, month after month we waited for symptoms to manifest, questioning every nuance our child exhibited wondering if it meant something more… for 8 years. When his first tumors were confirmed at 2 and a half years old, we watched them grow. We watched doctors measure and chart. We waited for appointments, frequented 13 different specialists, changed clinics, watched new symptoms come to light, and still tried to maintain a normal home life. This was our life for 8 years. And then something magical happened. NF research shifted. The NF Symposium came together, MEK inhibitors were tried and wildly successful, the number of clinical trials more than tripled, education and learning in the NF arena exploded and as a result, NF families had the one thing they could get before Hope. Hope for options. Hope for treatments. Hope for relief. Hope for a future. Hope for parents that they would not have to bury their child after watching a lifetime of suffering. HOPE. You can’t put a price tag on that.
Today, instead of simply measuring tumors, taking blood, scheduling scans, and crossing our fingers, our doctors’ appointments include discussions of potential options and dialogues around what’s in a trial, what’s coming down the pipes, and what’s readily available today. Don’t get me wrong, it’s not a laundry list of options….. but there ARE options. It’s so much more than “watch and wait.”
CTF recently released a new 5-year strategic plan, but what do you think NF researchers should be focusing on?
It’s the proverbial chicken/ egg dilemma. Each pillar of the 5-year plan underpins the others….. There’s no point in having a vast clinical network if there are no therapies or drugs to offer patients. Conversely, there’s no use in having multiple treatment and drug options if you don’t have educated clinicians who are readily available to patients. And, of course, NONE of this is possible if we don’t have research grants and funds to execute the wet science that results from ground-breaking ideas. If we prioritize only one area- the others fail and that has a circular effect that makes the prioritized pillar a failure. The effort has to happen concurrently in each of the pillars. However, I think everything starts with the research. We have to start at the beginning to understand the unknown and solve the unconscious incompetence that holds us back. What is it we don’t know? If we can figure that out, then we can start to analyze and develop potential solutions that can be tested and ultimately promoted as a solution.
Is there anything else you want to add?
Life with NF affects more than just the patient and his/ her parents. It impacts family and friends, social interactions, teachers, and neighbors. Siblings, in particular, carry the burden of being the “normal” child, while parents are forced to focus on medical care for the NF child. Brothers and sisters carry around their own fears of losing a sibling or perhaps a misconception of being less important in the family. It’s complicated in their little minds. A child’s ego is fragile. In our house, our non-NF child carries the anxiety of his brother’s well-being before every scan. He carries a burden of responsibility to protect his brother and a sense of powerlessness in not being able to help. When he was little he would fantasize about riding the Magic School Bus into his brother’s body and growing Hulk-like hands so he could “beat up” the tumors.
On a social front, there are parents who distance their child from a friend with NF because they fear the unknown or don’t know how to communicate conversations about tumors, cancer, scans, and doctor visits with their own child. Then there are others who just want to be part of the perceived “tragedy,” seeking a relationship with the family and dramatizing the outcomes. It’s a complicated social path to navigate. 504 plans, excessive absenteeism due to doctor appointments, child fatigue from loss of sleep, and sometimes the inability to participate in regular school games/ activities complicate the NF-ers school experience. To top it all off, most people have never heard of NF. So, while this child is constantly being treated as an exception or complication to the norm, it differs from other disorders like diabetes, cancer, autism, dyslexia, and ADHD where the child struggles, but most caretakers are familiar with the disorder or are comfortable asking about it. As a parent, when you’re trying to explain to another parent, teacher, babysitter, school nurse, etc. that your child has NF, there’s an instant “deer in the headlights” look. While many people want to learn and self-educate, there are understandably just as many who can’t think past their own world of challenges.
Making NF research more visible means creating a world that NFers can navigate freely- without having to mask their symptoms, or explain their existence.
Sometimes living in the world of NF feels like having a school bully. There’s a constant underlying fear that trouble is just around the corner. You never get fully comfortable navigating familiar halls because sometimes the coast is clear, and sometimes it’s just you and bully face-to-face and no one is coming to save you. But in the case of NF, we have hope. We CAN fight back with the championing of NF research, experimentation, and availability of therapies and drugs, and a clinical network that can marry the patients to the treatment options. It is possible to overcome this disorder. It is possible to save our children. We have the opportunity, now is the time to seize it.
Click here to read the complete Make NF Research Visible collection.
