Friday, June 27, 2014

Son Rise, Son Set: A Mother's Dilemma

Parenthood is messy and magical. If you do your job halfway decently, it is your worst nightmare combined with your best fantasy.  In most cases, it doesn't happen naturally or easily; the way we saw it on television when we were growing up.  The Huxtables, Cunninghams, and Bradys certainly did nothing to prepare me for the job.  Raising children is a mountain climb, not a walk in the park.  Parts of the path are steep with twists and turns and others are on an even pitch, requiring little effort. To make things more complicated, each child that you have is another adventure altogether. If we only knew ahead of time which challenges we would face.

When you are told that your infant has a progressive tumor disorder, the journey is altered in a way that you could never have imagined.  There are changes in the way you think about things, which you previously took for granted. Instead of when he will accomplish a new milestone, you wonder if he will. Everything you imagined for your child is suddenly ambiguous and the mental image you have created of his future becomes blurred and uncertain.

You make choices about getting involved in the cause, which helps you to cope, and you drum up support from friends, family and anyone who will listen for that matter.  People want to help because it is so unfair and they realize that no matter how rough their child's ear infections are, they are blessed by comparison. Or perhaps, your strength and determination has inspired them to act.

When your teen-aged son's behavior takes a drastic turn for the worse, (Well he was always a spirited and sometimes unruly child anyway, right?) again, your path is altered.  He begins self-medicating and taking dangerous risks. You feel completely helpless and have no sense of control. And even though the two situations share a lot in common: everything you had imagined for his future becomes clouded, mental health disorders are unfair, you need help coping...you find yourself very much alone.

I am the mother of two such sons. Somehow, it always seems that their crises coincide and I am forced to choose between my sons. Which one has a more urgent need? Am I rescuing or enabling my older son? Who will suffer most if I turn to the other?  These are choices that mothers are not meant to make. These are impossible choices with dire consequences and do not ever have "right" answers.  Yet, I find myself in this unimaginable situation time and again.

Children being born with a spontaneous mutation of a neurological disorder that has no effective treatments and no cure is one of those horribly unfair events in life.  There is no shortage of sympathy and support available to them and to their caregivers. Their lives can be very challenging.  Children being born with mental health challenges is equally undue, yet with that comes stigma and, as opposed to tumor disorders, little sympathy and scant amounts of support from outsiders.  It is truly an unjust dichotomy that is central to my world.

One son has required long car rides to other states to find the appropriate specialists who know about neurofibromatosis. We have taken plane trips to participate in clinical studies and have had surgeries at hospitals far from home. My other son has been shipped across the country to avoid jail time at the age of 17.  He was entrusted to strangers in a wilderness camp and then to more strangers in a residential treatment facility that I had never laid my own eyes on. He spent ten months and four years worth of college savings, in this treatment, only to come back home and repeat his previous behavior, despite having plans in place to ensure his success.

Both sons have kept me awake many nights with fears of impending doom and irrational worries about future unknowns. Both have depended on me to make enormous, life-altering decisions on their behalfs; judgments, which would have been difficult for a stranger, are yet impossible for a mother. Imagine that your toddler keeps bumping into things, falling and hitting his head, has poor balance and muscle weakness, yet the neurologist following his care says, "I don't recommend MRI unless there is a valid reason to do one. Call me if he begins to drag a leg or can't stand up."  Can you conceptualize explaining what NF is to a so-called specialist and then have him report that he would like to aspirate the "swelling" (plexiform tumor) in your son's ankle and lower extremity to understand what is causing it?

Try to envision the courage and strength that it would take to call the police to report that your 19 year old son has threatened to take his own life and that he confided in you that he has a weapon. The tenacity it takes to stand by his hospital bed in the emergency room where he is being treated for a concussion and dog bites inflicted by the K-9 patrol when he hid in a basement and would not surrender, is unfathomable. Try to understand how it feels to have him spit at you and hurl insults about your crappy parenting while you, needing to plead with the staff to admit him to the inpatient unit for mental health, question every decision you have ever made that led you to this point in his life. 

These examples are just a small sampling of the trials that I have been "chosen" to face as the parent of these two boys. I don't ask for pity, I don't even want pity! I ask for understanding. Please know that in my heart, one son is no less significant than the other. My younger son, born with a neurological disorder, and my older son, who is an addict resulting from an imbalance in his brain chemistry, are both worthy of my kindness, and yours. I love them equally and unconditionally and I ask the same consideration from the world.

When you are a new parent it is devastating to hear these words describing the diagnosis of your infant: "There is currently no cure for neurofibromatosis and there are no effective treatments."  NF is highly under recognized, yet there are more occurrences of NF than of Cystic Fibrosis, Duchenne Muscular Dystrophy, Tay Sachs and Huntington's Disease combined! Research is crucial to changing these facts. In 2012, an NF Registry was launched to connect researchers and pharmaceutical companies with the NF patient database. The current focus is in getting people with NF to join the registry, and reaching the goal of 10,000 participants, so that the clinical studies can be adequately populated.
"NF research may benefit an additional 100 million Americans (i.e. 65 million with cancer and 35 million with learning disabilities)." (www.CTF.org)

Mental health problems are highly stigmatized and exceedingly misunderstood. Yet:
  • One in five American adults experienced a mental health issue
  • One in 10 young people experienced a period of major depression
  • One in 20 Americans lived with a serious mental illness, such as schizophrenia, bipolar disorder, or major depression
Suicide is the 10th leading cause of death in the United States. It accounts for the loss of more than 38,000 American lives each year, more than double the number of lives lost to homicide.(http://www.mentalhealth.gov/basics/myths-facts/) 
With support and understanding, individuals suffering from mental health disorders can thrive in society. 
"Friends and loved ones can make a big difference. Only 38% of adults with diagnosable mental health problems and less than 20% of children and adolescents receive needed treatment. Friends and family can be important influences to help someone get the treatment and services they need by:
  • Learning and sharing the facts about mental health, especially if you hear something that isn't true
  • Treating them with respect, just as you would anyone else
Human compassion and kindness are easy to come by when you suffer from a medical diagnosis, yet much less so when you endure a mental health disorder.  Chances are that you are close to someone who has fit into the latter category and have felt a need to hide that person's sorrow from others to avoid the dishonor that tends to go along with it. Change can happen and will if even just one person embraces it. Will you be the one to alter the pattern of behavior? Or will you wait for someone else to do so?
“Love and compassion are necessities, not luxuries. Without them, humanity cannot survive.” 
― Dalai Lama XIVThe Art of Happiness












Monday, June 9, 2014

Surrounded by Greatness

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 LaurĂ©e 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:
VP of CTF, John Heropoulos with NF Moms
April Anderson, Anita Gribben and me

NF2 Hero, Matt Hay, Anita Gribben, Tracy Galloway-board member, Peter and I

The beautiful Omni-Shoreham Hotel in DC

Storming Capitol Hill with Farida Timal
Rhianna Currato
Politics!






NF Teens and Siblings hanging out together and having fun.


Words of wisdom from
Communications Director, Simon Vukelj


Effective Communication by Peter Sorman, PhD at Chapter Council







Monday, May 19, 2014

NF is...Awareness, Hope, Never Giving Up


Being that May is NF Awareness month, and the awareness campaign coming out of the Children's Tumor Foundation this year is "NF is," I have posted my interpretations, along with some factual information, on my Facebook page. This is a compilation of all of my posts for anyone who missed them or isn't on Facebook at all.

We started the month just fresh from an MRI, which revealed new tumor growth in Jesse's spine. The upside is that he isn't experiencing any symptoms which would require intervention at this time. The downside is that new tumors are new tumors and we will have to monitor them and be terrified of what they could become.

During the course of the month, a beautiful, 8 year old little girl with NF1, was snatched away from her family very suddenly.  I cry everyday when I read her beloved mother's posts, which she writes in conversation with the daughter whose hair she should still be brushing and whose body she should still be snuggling. She passed on Mother's Day, of all days to lose a child, this particular mother will never again have the wherewithal to celebrate that sacred day. 


Jesse Sorman had an amazing first day of NF Awareness month with a $1000 donation, made anonymously by someone I went to high school with, to his personal fundraising page! I got all choked up this morning when I opened my email and saw the notification. We are so thankful for every donation that gets us closer to finding effective treatments that will make Jesse's future with this progressive tumor disorder more manageable. Thank you, you know who you are! 
 #EndNF



May 2 via iOS 


Rockin' NF Awareness Day 2 #EndNF





May 3 · Edited

NF is...unpredictable
We never know what each day will bring. Each time Jesse shows me a new lump or tells me about a new pain, my heart sinks to the bottom of my chest while I smile reassuringly and tell him, "It's probably nothing, but let's get it checked out." I stay in this state of panic and worry until we see the specialist in question and HE/SHE reassures ME or doesn't. One day, too soon, Jesse will carry this burden of worry and uncertainty alone. For now, I carry it for him. 
 #EndNF
NF is..Perseverance

Most kids with NF have the added challenge of learning disabilities (60%). They require ongoing neuropsychological evaluation throughout their education careers and often have Individualized Education Plans (IEP), which provide accommodations and modifications to their lessons.

As you can see, from his middle school biography artwork, Jesse has not let this struggle define him. The words that are the largest: Animal Lover, NYY Fan, Likes Tacos, are the things that he feels most accurately describe him. The words that are the smallest: have NF, have screws in my knee and legs are different lengths are the least important descriptors.

Although he has always had to work harder, study longer, go to summer school and relearn the same concepts repetitively, Jesse has never let his disabilities hold him back. As a high school Sophomore this year, Jesse made the honor role for the first time! That is what I call perseverance! #EndNF








NF is...Passion

We each find our separate ways to express our passion about NF. If you are Annette Bakker, President and Chief Scientific Officer of Children's Tumor Foundation, you drive research that will change the statement, "no treatments, no cure," to "good treatments, cured for future generations."

If you're a parent, like I am, you post things on Facebook, Twitter and Instagram every single day. You hold fundraising events, organize Walks, attend forums and summits and councils. You get a giant tattoo on your forearm, even though you know that middle class, suburban Moms don't normally do so, just in the hopes that someone, somewhere, will ask you about it. You would proselytize from the street corners, if you thought it would make a difference, at the risk of looking like a loon. You would do anything. And that is the message that Elizabeth and Jake Burke convey in this video about the foundation they started to accomplish all of these things and more. #EndNF

Please take a moment to watch. It is beautifully done, heartfelt and empowering. Today they are waiting for the results of Jack's first MRI since starting chemotherapy for a brainstem glioma; sitting on hopes and prayers that the growth has halted and even better, that there is shrinkage.

Cure NF With Jack Video  






NF is...Responsibility

The Chosen Mothers by Erma Bombeck
Most women become a mother by accident,
some by choice and a few by habit. Did you ever wonder how mother's of children with life threatening illnesses are chosen?Somehow, I visualize God hovering over earth selecting His instruments for progagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger.......
"Armstrong, Beth, son, patron saint Matthew" Forrest, Marjorie, daughter, patron saint Cecilia "Rutledge, Carrie, twins, partron saint Greard."
Finally, He passes a name to an angel and says,
"Give her a child with cancer." The angel is curious.
"Why this one, God? She's so happy."
"Exactly," smiles God, "Could I give a child with cancer a mother who does not know laughter?
That would be cruel."
"But, does she have patience?" asks the angel,
"I don't want her to have too much patience or she will drown in a sea of self-pity and despair.
Once the shock and resentment
wears off,she will handle it."
I watched her today," said God.
"She has that feeling of self-independence that is so rare and necessary in a mother. You see, the child I'm going to give her has it's own world.
She has to make it live in her world and that's not going to be easy."But Lord, I don't think she believes in you," said the angel.
"No matter, I can fix that.
This one is perfect.
She has just enough selfishness."
The angel gasps, "Selfishness?
Is that a virtue?"
God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is the woman I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied.
She will never take anything her child does for granted.
She will never consider a single step ordinary. I will permit her to see clearly the things I see....ignorance,cruelty, prejudice....
and allow her to rise above them.
"And what about her patron saint" asks the angel,
his pen poised in mid-air.
God smiles and says...
"A mirror will suffice

Happy Mother's Day to all of the "chosen" mothers. #EndNF




NF is...Uncertainty  

"NF1 is a progressive disorder, which means most symptoms will worsen over time, although a small number of people may have symptoms that remain constant. It isn’t possible to predict the course of an individual’s disorder. In general, most people with NF1 will develop mild to moderate symptoms. Most people with NF1 have a normal life expectancy. Neurofibromas on or under the skin can increase with age and cause cosmetic and psychological issues."

This is what the doctors tell us as newly diagnosed families. I suppose this is supposed to offer us comfort. However, when this disclosure is followed by a baseline MRI and "routine" visits with a variety of specialists to "rule out" a stream of seemingly endless possibilities, it isn't ease to feel any level of comfort whatsoever.

There are many who live with NF who never develop serious manifestations. In fact, I've met more than a few who have lived without the knowledge of having the disorder until they have passed it on to a child who has more severe complications.

On the opposite end of the spectrum, there is the reality of those who are affected in a way that challenges our collective ability understand God's plan. Sometimes, the child struggles from the beginning of her life and then there are those who have minimal affect until that one tumor that changes everything.

As a parent of a precious child, whose future holds such profound uncertainty, I can barely breathe even writing these words.

Research can change the current level of uncertainty. If treatments can be found, we can all rest a bit easier and fear the future less. #EndNF









NF is...Misunderstood


"Children with NF1 experience more problems with social skills, anxiety, depression, and aggressive behavior compared to normative means and unaffected siblings on the Child Behavior Checklist" (CBCL; Barton & North, 2004; Johnson, Saal, Lovell, & Schorry, 1999).

In addition, our children can have a variety of disfiguring and often painful conditions, such as Plexiform tumors, Optic Pathway Gliomas, Scoliosis, tibial bowing and chronic migraines. These, coupled with the non-verbal learning disabilities of immature social skills, difficulty reading social cues and taking the perspective of another person, attention and focus issues as well as rumination and perseveration, can result in social isolation.

To put it simply, our kids aren't getting many birthday party invitations and in the later years, they are spending a lot of time alone.

Although my son seems happy enough by himself, I can't help but want more for him. His siblings all lead typically busy social lives and have rules and curfews that will likely never apply to him. The one good friend he had was very similar to him socially and they really seemed to understand one another. But 8 months ago we moved 500 miles away from that one good friend and since then, he hasn't asked or been asked to hang out with anyone even once.

Every adult who meets my son finds him delightful, so why is the perspective so different among his peers? His sister reports that he has a few friends that he sits with at lunch, so at least my vision of him alone at an otherwise empty table is dispelled. He's so kind, caring and sincerely concerned for others, how can these traits not appeal to the other kids? Why is he so misunderstood?

As parents of kids with NF, we already have too many concerns; worrying about their happiness and companionship is just the icing on the cake. We have made a conscientious effort to surround our son with others in the NF community in the hopes that he will always have a place where he fits in just right. Being a teenager comes with its own set of challenges; imagine going back in time and adding physical and social/emotional burdens to all of those pre-existing insecurities. It's a little too much to process, isn't it? #EndNF






May 14 · Edited
NF is...Demanding

Sometimes the demands of NF pull us away from other responsibilities: work, events, home and, yes, even our other children. I blogged about this a few months ago, and in honor of my youngest daughter's birthday today, I felt this would be a good day to re-share that post. #EndNF

Me Too Blog

May 15 · Edited
NF...Sucks!

It sometimes sucks the energy out of us.
It often sucks the joy from our hearts.
It sucks the childhood from our children
And from time to time, it even sucks our hope and our faith away and knocks us to our knees not knowing where to go from there.

This week, NF sucked another young life away; an 8 year old life, and right now it is sucking away her parents' will to carry on.

Dedicated to the family of Nicole on the day after they laid their baby to rest. #EndNF







NF is...Spreading awareness wherever I go. #EndNF



#endnf #curenf




NF is...Proactivity

Learning disabilities are a common problem in children with neurofibromatosis type 1 (NF1). Over half of children with NF1 have difficulty with academic performance, which can cause them to repeat a grade in school. A learning disability can be thought of as a short circuit or problem (dysfunction) in one or several of channels in the brain. Dysfunction in any of these channels can make it harder for a child to perform up to their potential. (http://nfcenter.wustl.edu/what-is-nf/learning-disabilities-and-attention-deficits/)

A tumor of the nerve to the eye, called optic glioma, often emerges in early childhood, sometimes causing painful bulging of the eye and loss of vision as well as affecting pituitary hormone secretion. These types of optic gliomas are diagnosed by CT or MRI scanning and are generally responsive to radiation treatment or chemotherapy. However, it is not uncommon to find evidence by CT or MRI scan of thickening of the optic nerve in children with NF1 who manifest no outward signs or symptoms of optic glioma. These cases rarely progress to a point of requiring treatment, but all children with NF1 should have annual ophthalmologic exams to insure early diagnosis of optic glioma. (http://www.understandingnf1.org/exp/int_exp_wci.html)

In both cases, early diagnosis is key to successful intervention. As the mother of a son with NF1 and learning disabilities, and the wife of a Neuropsychologist, I am often disappointed to hear that it is not standard practice to recommend Neuropsychological evaluation early and continually in children with NF1. Jesse has been evaluated, by a board certified neuropsychologist, every three years from the age of 18 months. I attribute his academic success, despite the presence of global learning challenges, to early intervention, consistent supportive therapies and aggressive advocacy in all areas of his life. He ALWAYS exceeds our expectations and his intellectual growth under these circumstances has astounded us.

That being said, I am a mother of a child with disabilities; I have concerns for his future. I worry that he will not fulfill his dream of becoming a Veterinary Technician. I am concerned that he will not have an income potential necessary to support the family that he envisions having. At 12 years old, Jesse asked me how much money he would need to make so that his wife could stay home to take care of their children. What I do not doubt is that he will work harder than most to achieve his goals. He discovered early on that learning is more difficult for him, but he never lets that hold him back.

When he was very young, the local neurologist (not an NF specialist), did not recommend baseline MRI. He told us that he would order an MRI if our toddler started showing signs of neurological deficits (bumping into things more than usual, falling down, dragging a leg or having seizures, among other things). It wasn't until he was 7 years old that we understood the importance of having him seen in a designated NF clinic and began driving him to the closest one, 5 hours away. The first thing our new neurologist did was order an MRI.

The results showed thickening of the optic nerve into the chiasm. We were anguished by this news, imagining that by not insisting on an earlier scan, we had put our son's health at risk. His regular ophthalmologic exams did not indicate nerve pallor. We were exceptionally lucky. Jesse's glioma remained mostly stable and never caused any vision loss or need for intervention.

I cannot express passionately enough, how important it is to have every child with this progressive tumor disorder seen by NF specialists in a clinic setting where his/her health care providers will be proactive. #EndNF



Connie Brisson Sorman shared Allison Sovie's photo.
May 16
#EndNF




May 17 · Edited

NF is...

We hope you can find inspiration to join our fight through this video created to raise funds and awareness for neurofibromatosis. #EndNF #R4R

Jesse's Racing4Research Fundraising page



Connie Brisson Sorman shared Jake Burke's status
May 18 ·
NF is...Real
Real scary
Real people working hard to effect change
Real stories
Real families suffering
Real children and Real adults who deserve more answers
Real hope and Real Courage
Real life Heroes
Read about one of them below. ‪#‎EndNF‬
At the end of this NF journey when we find a cure, my personal belief is that Dr. Bruce R. Korf will be the singularly most important reason for that cure IF we realistically could choose one person. As a desperate father who hours earlier was told that his son had NF, I scoured the internet to figure out who the top person was in the field and then email that person. It was Dr. Korf. I emailed him at 2 AM and HOPED I would hear from him soon. TWENTY MINUTES later I got a response to bring Jack to see him. At that point, I knew Jack was in good hands. I never told Bruce this story but I do today to celebrate him, his life's work and to thank him so very much. His "hero cape" is the real deal. F NF!




May 18 · 

NF is...Optimism and Hope!
‪#‎EndNF‬

April Anderson's photo.



5/18:  We were in the Richmond paper today!

End of Part I