Savanna, has been involved with the NF Hope Concert, which is based out of Las Vegas. Besides helping the organizers with the event, she has spoken at the concert a few times, sharing her story living with NF. Last November, Savanna went to Nashville to shoot the new NF Network video with others who have NF. She wants to be more than "the girl with tumors", "the girl with one leg", "the girl on crutches". Savanna wants to make an impression. She wants to make a difference to those who live with NF and feel alone. Savanna is a NF warrior, she has overcome many challenges, being pointed and stared at and having moments of "why me". But, she wouldn't change anything. Living with NF made her into the person that she is, she is a fighter and she is understanding. Savanna has also met the most incredible people, because of NF: a family.
Friday, August 4, 2017
In October 1983, Jerry met a doctor who told him his life would consist of going home and waiting to die. He first referred to this death sentence as Von Recklinghausen’s Disease. Jerry was in shock. He did not know what to do. All of the information then was associated with Joseph Merrick, “The Elephant Man”. Ironically, weeks before his unfortunate diagnosis, he had met a man who first introduced him to “IT”, but he called it Neurofibromatosis (NF). He was living, successfully, with NF, appearing in a sideshow at the Tulsa State Fair. His stage name was “The Man with Two Faces”. One side of his face was about five times larger than the other. His name was Robert “Bob” Melvin. He was a nice gentleman, and Jerry was able to see him perform on more than one occasion. Jerry wondered if he would eventually look like him. Jerry felt mentally lost since he could not easily explain what was happening to him and Melvin was the only other person he knew with NF.
Jerry returned to high school to get his diploma. During the summer, he attended the Upward Bound Program offered by Rogers State College. Since he was unable to join the Navy, and was “sentenced to die”, he chose to return to school and work toward a degree. Jerry obtained his AA and BA in Technical Theatre from Rogers State College. He worked for a short time at Discoveryland in Oklahoma doing the play “Oklahoma!". Trying his hand at counter sales, he moved to Texas. He later worked managing and doing maintenance for a small motel. Choosing to take some time off from the motel, he traveled on a two man construction crew across seven states for about a year. Jerry later returned to Oklahoma, where he is now living and taking care of the house he grew up in. Around, the house, he tinkers with small projects using wood and other materials.
NF has inspired Jerry to do many things. In Jerry's words "I’m always advocating and iNForming people about Neurofibromatosis. I did my first NF Walk in 2010 and have continued to do so since then. I have also began running in the Cupid’s Undie Run in multiple states". Jerry was the top fundraiser for the Cupid's Undie Run in 2017. Jerry passed away suddenly and unexpectedly later that year. His legacy will live on through all who knew him.
Sunday, July 2, 2017
Many would think that a childhood filled with doctor’s appointments, needles, tests and surgeries would be difficult, but for Angela, that was the easy part because she understood from a very young age how important and necessary all of this was. The worst part of her childhood was the bullying of her classmates. Angela felt like an outcast for much of her childhood and adolescents because her classmates were very cruel, calling her names and simply ignoring her presence. Middle and high school were especially difficult because the jokes and shunning became more cruel and frequent. Angela would more often than not get home from school to the arms of her brothers and parents and cry. Thankfully, Angela has always had an amazing support system: two loving parents and two older brothers that can at times be over protective. Despite being harshly bullied by classmates, Angela met and made incredible friends in school that helped her heal and deal with ignorant and mean classmates.
In July of 2012, Angela began writing a blog, “Life with Neurofibromatosis.” She writes about her childhood and how bullying had played a role in her depression even years after graduating high school. She writes about surgeries, scars and how she uses her hair has a protective ‘’shield”. Angela even shared her suicidal thoughts and close attempt. But she also writes about positive and amazingly beautiful aspects of her life, like graduating college, being in love and finding work in her field of study. In December of 2013, Angela graduated college with a Bachelors in psychology and a minor in sociology. Shortly after in March of 2014, she began working for the Crisis Center of Tampa Bay, a nonprofit. She began working as an Intervention Specialist, answering crisis calls, including speaking with individuals that were having suicidal thoughts. In April of 2017, Angela was promoted into Supervisor of that very same department.
Angela wants others with NF to know that they are not just someone with NF, they are an incredible human being with a great purpose. That is a big reason why she writes and shares her story because she does not want others to think that all they have to offer this world if NF. Angela’s determination has given her the strength to not give up and keep pushing forward. She participates every year in the Cupid’s Undie Run to help spread awareness and is not afraid to educate a stranger about NF and why her face looks the way it does.
Wednesday, May 31, 2017
|"Keisha Swimming with Dolphins" 30" x 24" Oil on Canvas|
Her quest to live life to the fullest led her to pursue her dreams, from getting behind the wheel and driving as a person with a disability in Malaysia to swimming with dolphins - something she got to do in 2012 when she visited San Diego. Indeed, Keisha did more than just live her dreams, she used her NF2 to encourage people to realize their true potential and to come together and unite in love. As she said in her last public speech before her death when asked to comment on her numerous surgical scars, "I do not see reason to consider these scars a disfigurement of my body. Rather, I choose to see them a testament of how trials and adversity can unite the human spirit. Out of tragedy, my family, doctors, nurses, physiotherapists, caregivers and friends have united time and again to shine forth with the ultimate good within humankind. This is the story behind each and every scar on my body - of a unity of care and love turning tragedy into triumph."
Tuesday, May 30, 2017
Avi hopes that in the future doctors will find a cure for this disorder and in the meantime the most important thing is to smile as much as possible and adopt positive thoughts: we live only once and always smile even if it is difficult.
Sunday, May 28, 2017
Philip Moss is from Birmingham, Alabama and was diagnosed with NF at the age of 37 following the diagnosis of both of his children in 2012. NF was a completely new term to Philip and the diagnosis was somewhat of a surprise since he has no significant indicators. Since his oldest child has significant tumor issues Philip struggled with feelings of guilt for passing along this condition to his kids. A condition they will one-day have to consider when planning for their own family.
In retrospect Philip can think of a few clues that could have indicated a need for further tests. In high school he had a tumor removed from his back that was likely only tested for malignancy and nothing else. Philip, like many with NF, often has trouble staying on task and is self-diagnosed as ADD. He was always the shortest in his classes and fact, he took growth hormones through high school. His head is also so big that few hats fit him!
One year following the diagnoses, the Moss family attended the 2013 NF Forum in Nashville where they were all exposed to what this condition means for many and what it could mean for them. Philip and his family are active in the NF community and are eager and happy to share their experiences with others. He loves sharing his story with others and is amazed at how often a friend-of-a-friend gets referred to him. Philip feels fortunate to live in Birmingham where some of the most renowned NF doctors reside. Though he has no tumor issues that require regular check-ups he wants to best treatment possible for his children. Philip’s son is enrolled in a clinical trial through NIH and had significant success in reducing the size of his tumor. Because of his parents advocacy
Since graduating from college Philip has worked on college campuses in three different states. In his current position he works for Mississippi State University in the office of undergraduate admission and scholarships. He enjoys working with students as they are figuring out what they want to become, what college they want to attend, and the opportunities that exist for them to learn and grow in college.
Outside of work Philip enjoys spending time with family and standing over a hot grill with something delicious cooking.
Wednesday, May 24, 2017
|"Neil Cycling the Course" 30" x 24" Oil on Canvas|
Neil has long since loved being underestimated and proving his abilities to doubters. In his early 30’s with a brilliant new wife in tow – he left SA to work in the UK. It was here he met Professor Ferner, the head of Neurology at Guys, St Marks in London. Prof Ferner made him feel understood (Psychologically more than anything else). The explosion of knowledge was very rewarding. Prof Ferner remains a leading NF authority. Plus, she was kind and treated me like an intellectually sound individual. THE NHS were brilliant in managing his NF although the knowledge and experience is still very limited and even their surgeons or specialists were hesitant to operate or “cut” because they had no experience – Neil remains a medical curiosity to this day. By now he tell doctors stuff they are guessing.
Neil returned to South Africa in 2002 – with his wife and 2 beautiful kids and was ready for the challenges his country likes to pose. This is when the management of his NF become more complex MRI’s, bones, gastro, and lots of cutting. He had found some great doctors, Dr Richard Brink his physician does a brilliant job cutting of fibromas. He recently had several cut off his face and the scars are almost invisible. Dr Lia Mavroard is a fantastic neurologist.
They say "NF warrior" and they are right – it's warrior class and he is a 52-year-old last man standing gladiator. It’s about confidence and a never ever say die attitude. Luck is a critical factor and his primary luck is having an immense support structure built of a wife, family and a select group of friends. It’s is his impenetrable shield as a warrior – they fight for me, defend me and never let me believe that I am anything but vastly superior. It is vital as an NF sufferer to have a support structure – it is the sacred foundation upon which NF can be dealt with for a lifetime. You need the experts, The Prof Ferner, The Richard Brinks and the Lea Movroardis, Dr Barrows these and other kind and committed medical practioners. The number of times my results have been sent to the medical panel or the weekly discussion board are too frequent to mention. But there have been some unkind, uncaring and stupid doctors. You need love, a wife, special kids, a family, friends and reading, traveling and maybe a hobby. Cycling is his perpetual mistress and largely carved his identity into the bark of the world. It is the pure joy of moving fast and looking like everyone else because at speed we are all blurred. It’s because it’s outdoors. The sheer pleasure of pitting a racing heart against a raging hill is an undying love.
Neil also enjoys being with like-minded people and watching the sunrise start the day. He was a sponsored athlete in a sponsored car. He has done thousands of races including 7 Cape Epics. He has been to the 4 corners of the world on his bike and he doesn't see himself stopping anytime soon. He has created mountain bike clubs, written for magazines and enjoys some infamy in the cycling community. It proved that he will not be limited.
In 2009, Neil had a horrific crash and rolled his sponsored Fortuner 6 times and obliterated everything in the car including himself. He escaped by a miracle of athletic conditioning and luck. He was really fortunate (pun) to survive and his ability to fight against NF helped his fight against dying from injuries and infection. In the hospital, Angels came to collect him and it was an attractive offer with a bonus plan and a nice house but I said I had things to do and promises to keep before he died. One was to raise his children, another was to ride with a dying friend across South Africa in the Jozi2C and another is to help others combat NF. A friend said, “God wants you to do stuff, don’t waste the chance”. Today I start by being an NF fighter.