NF SAID!: CDMRP

I sit here reflecting on the NF Forum weekend from my couch. It is difficult to summarize all of the feelings that come from being surrounded by greatness. From re-connecting and making new connections, to being addressed by the Director of the NIH, Francis Collins, MD, PhD (one of the co-discoverers of the NF gene), and all of the greatness in between, I am thoroughly, mentally and physically, deliciously exhausted.

How do I describe the completeness that comes from being a part of this amazing NF community; the only people in my life who really get it? It is nearly impossible to explain the bond, that we in this community have formed, to those who so generously show their compassion and consistently support our efforts, yet do not share our journey. After having had the opportunity to spend time together I miss them all so deeply from the minute we separate. And with every event, I expand my NF family, which invariably results in new little ones for whom I will surely lose sleep.

My very first visit to Capitol Hill as an advocate for CDMRP funding for NF research was an immersed learning experience. Thirty-seven of us took to the Hill on June 5th to attend meetings with Congressional staff, Representatives and Senators. I was fortunate to be among a well-rounded team consisting of Squire Patton Boggs Staff member, Karen Kudelko, CTF Staff member, Garrett Gleeson, an NF2 patient from CT, Rhianna Curotto, an NF1 wife and mother from NJ, Farida Timal and me, NF1 mom, a VA transplant from NY. As the day progressed, and with it, our confidence increased, we each contributed a unique perspective of the crucial need for continued support of DOD funding. I am truly hooked to this newest role in my fight to #EndNF. If you are considering participation in future efforts, please take this one piece of advice very seriously. Wear comfortable shoes!

Our Chapter Council has one opportunity to gather together each year. We call it networking time, but even more than that, it is a period of time in which we are re-inspired and recharged to get back out there and kick NF's butt. We are the public face of the Children's Tumor Foundation; often times, the first contact an individual will have with the foundation. As Chapter Council leaders, Jill Markland, Karyn Zazula and I have the responsibility of guiding, inspiring and setting an example for the nation's CTF ambassadors. We strive to assemble a day filled with useful tools that this very important resource of people can take back home and use to guide and inspire those in their own chapters. In recognition of the greatness of this amazing group of volunteers, whose passion is driven by love and hope, I created this video.

Dr. David Viskochil, co-director of
NF Clinic, University of Utah

Just when I think I know all there is to know about NF (not nearly), I learn many new things from the forum presenters and key-note speakers. Some aspects are enlightening and will surely make my life easier, while others destroy me with their possibilities. The varied topics on this year's agenda gave me much to absorb. There were discussions to feed my psyche about learning, coping, and improving social skills and there were topics to fuel my intellect, covering pain, genetics, and tumor management. The malignancy presentation frightened me beyond my own understanding and required me to take some time to regain my composure. I am happy that I did, because the last two sessions about NF history and current research recharged my battery. If the researchers and doctors have had the ability to gain the increased understanding that they have in just the past few decades, I am encouraged to believe that with advancements in technology and new interest in NF research, they will bring us much closer to a cure and effective treatments, very soon.

Dr. Maria Acosta, Children's
National Medical Center

Jessica Cook, UK Director, Can You Hear Us?

Francis Collins, MD, PhD, director of the NIH, is an extremely busy man. Yet, he committed to taking a brief amount of time out of his schedule to address our group; the largest gathering of NF doctors, researchers, patients and families to date. We are indeed a contagious bunch. Although, Dr. Collins certainly had someplace else to be, he continued to "work the room" and pose for photos after the standing ovation his address elicited from the crowd. How could we not be in awe of this man's greatness? He is the Director of the National Institutes of Health (NIH) and the overseer of the largest body of work in biomedical research in the world. He is responsible for landmark discoveries of disease genes and, in fact, was a co-discoverer of the very gene, which changed the life of every single person in that room in one way or another; the NF gene.

The evening progressed in its greatness with the real-life account of this year's Children's Tumor Foundation Ambassador, Bailey Gribben. At just 16 years old, Bailey has already experienced more than his fair share of health challenges, yet he has never allowed himself to be a victim of his circumstances. How easy it would be for him to sink into that role. Instead, Bailey rises to each challenge and overcomes. Beyond that, he exceeds anyone's expectations, except for his own, and excels in life. I, for one, will not be one bit surprised when the day comes that Bailey has played a role in huge scientific advancements of NF research. Has this ever actually occurred in history?

I think of Bailey, a young man I am blessed to know, when I read this Aristotle quote:

"The beauty of the soul shines out when a man bears with composure one heavy mischance after another, not because he does not feel them, but because he is a man of high and heroic temper."

NF heroes Bailey Gribben and D. Anthony Evans

As I recovered from the lump of pride that Bailey's story formed in my throat, one last speaker took the podium; Annette Bakker, PhD, President and CSO (Chief Scientific Officer) of Children's Tumor Foundation. Dr. Bakker began her rein with CTF just months ago after serving as the CSO for the past several years. She has not allowed one role to hinder the other as her drive to #EndNF somehow continues to gain momentum with every new advancement. "I am going to save your children," was the declaration that got my tears flowing, partly because nobody has ever said it before, but mostly because I believe her. Dr. Bakker's passion about her research is awe inspiring, but her genuine care and concern for the people affected by NF touches my core. I am proud to serve the foundation that she so effectively leads toward a cure.

Peter and I with NF Moms Stephanie and April
and CTF President and CSO, Annette Bakker

The greatest moment of the night came in the announcement of Jim Bob and Laurée Moffett's $2.5 million dollar matching gift donation to fund a SYNODOS research collaboration for NF1. This follows a recent announcement of a gift made by Mark and Tracy Galloway toward a similar project for NF2.

To say that my hope is renewed after this powerful weekend of being surrounded by greatness, is clearly an understatement. I am at a loss to describe the myriad of emotions I experienced over the course of these 4 days. Advocacy, Community, Networking, Education, Engagement, Inspiration and Encouragement are just a few of the words that summarize a Children's Tumor Foundation NF Forum weekend. If you have not yet had the opportunity to participate, you are missing out. Children's Tumor Foundation makes every effort to reduce costs and select locations that will make the events accessible to all. I would be happy to help you find a way to make it to the next one, ten months from now.

Some highlights from the weekend: