Tuesday, January 12, 2021
Saturday, December 5, 2020
Twenty-seven- year- old Noah Hester was diagnosed with NF when he was five months old. He also lives with Moyamoya Syndrome, a rare disorder that effects the vessels in the brain. Since his diagnosis he has had three strokes, many surgeries and suffers learning differences plus physical deficits. Through it all, he has been a constant inspiration to everyone he meets. His attitude - always positive. His mood – always happy. His smile never fades.
When Noah was diagnosed, it was at a routine doctor visit – he noted just a few café au lait spots and that was the first the family had heard the word: Neurofibromatosis. Three months later everything changed. One morning Noah’s arm started to twitch and his right side seemed weak. A call to the nurse assured the family that it was nothing. However, the next morning his entire right side became involved. By the end of the following week, he had been to see a neurologist, had an MRI, an EEG and a cause. Ten percent of his brain was "calcified" due to a stroke in - utero. What did that mean?
At the family's request, the pediatrician tracked down and arranged for a visit with NF expert, Mary Zupanc at the Mayo Clinic (in 1993 the internet was not available as a tool). Dr. Zupanc ordered an angiogram and it suggested Moyamoya Syndrome. The family watched and waited. Years went by with no real health concerns although Noah struggled with gross and fine motor skills as well as learning and speech difficulties. He did not walk until 30 months.
After two cerebral events: one in 2005 and one in 2014, Noah underwent cerebral vascular surgery, giving the family hope that the strokes were behind him. Today, his shiny, fun personality thrives and remains remarkable to everyone he gets to know. His love of movies, sports and video games keep him entertained and very busy.
He has worked at Regal Cinemas since 2017 and looks forward to every minute. He is even on a first name basis with several celebrities who frequent his theatre! What makes this young guy especially remarkable is that through test after test, poke after poke, symptom after symptom: he never complains. His smile doesn’t fade, his outlook stays positive.
Nashville has come a long way since Noah's diagnosis in 1993. The Monroe Carell, Jr. Children's Hospital was built, bringing doctors with the very training we sought at the Mayo Clinic right to middle Tennessee. And in 2010 Vanderbilt opened its very on NF Clinic. Noah and his family owe so much to NF Tennessee and hope to continue to support their effort and do everything they can to ensure their success.
Monday, November 30, 2020
|"Ted Practicing Law" Oil on Canvas. 2021|
As a law-student at the University of Tennessee, Ted received offers of commission as a Judge Advocate General (JAG) Officer from the Army and the Airforce. However, those offers were contingent upon receiving a satisfactory medical examination. During a follow up military physical in April, the doctor detected symptoms of spinal cord compression and ordered an MRI. The MRI revealed two Neurofibroma tumors located at C1 and C2 (the top of the spinal cord, near the base of the brain). Later that week, with just two weeks remaining before law school graduation, and only 12 weeks before the bar exam, Ted consulted with a neurosurgeon who informed Ted that he would have to cancel his plans to take the bar exam because he would be recuperating from a major neurosurgery to remove the tumors. The doctors informed Ted that he would never be able to serve in the military. In the matter of just a few days, Ted’s military career evaporated and he learned he would be undergoing major surgery. However, Ted was very fortunate because his spinal cord compression was discovered mere weeks before doctors believed he would have likely experienced permanent partial or total paralysis. Without the military commission and subsequent medical exams, Ted’s condition would not have been discovered in time.
While recovering from his surgery, Ted studied for the bar exam. Ted returned to his native Murfreesboro, married Kelly (who stuck by his side through the entire ordeal), opened his law practice, and eventually became a partner at Murfree & Goodman, PLLC, focusing his practice in estate planning, probate, business, and real estate law.
Ted also serves on Board of Directors of the Lascassas Volunteer Fire Department, the Tennessee Bar Association House of Delegates, The Webb School Alumni Board, the Board of Directors of Oaklands Mansion Historic House Museum, and has served in many other organizations. Ted enjoys spending time on his family’s farm with his wife and son.
Saturday, November 21, 2020
|"Jason Stripping Copper Wire" Oil on Canvas. 30" x 24"|
Saturday, October 31, 2020
|"Aaron Visiting Tibet" Oil on Canvas. 30" x 24"|
Aaron Anderson was born in Michigan in 1981. He was a chubby little blonde who never met a ball he didn’t want. He excelled in gross motor skills and language development. The diagnosis of NF1 at age three was a shock. If a friend hadn’t shown his mother her own daughter’s cafe-au-lait spots, the family would never have guessed that anything was amiss.
Apart from some fine motor delays and a moderate degree of ADD, Aaron’s NF had only minor impact on his early school years. His thoughts would get ahead of his slow handwriting, which made for messy assignments. Although he learned easily, his notebooks were a chaotic mess. He left a trail of possessions wherever he went. He studied in 20-minute bursts and always with TV or music (hiphop) going. At night the hum of a fan helped him sleep. On the plus side, his quick wit, diplomacy and generous nature made him everyone’s friend. Besides his love for balls, ball sports and music, he continued to add new interests.
After junior year he entered a two-year international baccalaureate program in New Mexico. The program, designed to promote world peace, had only 200 students - 50 Americans and 150 from dozens of other countries. There he developed an interest in Tibetan Buddhism and added friends from around the world. Next was the University of Michigan, where his ADD caught up with him. Having chosen grades over sleep, he was heading toward a crash. Enter Concerta, the salvation of his college career. By cosmic good fortune Michigan regularly hosted a summer Tibet program. This painting is from a photo taken on the first of three Tibet trips. In those same years his music passion shifted to a genre known as Northern Soul produced in nearby Detroit. He would scour Detroit junk shops, “digging” for obscure 45s from the 60s and 70s.
In 2006 Aaron was accepted into a PhD program in California to study child development. It only took a year to realize he wasn’t enjoying life as he had in Ann Arbor. Grad school didn’t have room for his wide-ranging interests. He planned to finish the two-year Master’s degree and recalculate his future. Everything changed in March 2008; he stopped going to class, answering emails, texts, phone calls or knocks on his door. It took three months of this reclusive behavior to get him admitted to the psych ward of the university’s hospital. Within two days came the answer - a tumor deep in his brain, malignant and inoperable. Six months of treatment brought him back to his fun-loving self. At nearly 28 years old, he moved home to Michigan to live his best life, not as an academic, but as a DJ and record dealer. He died in Buddhist peace at age 30, leaving a trail of friends around the world.
The story continues past Aaron’s death in Sept. 2011. With the help of his neuro-oncologist at Michigan and NF researcher, David Gutmann in St. Louis, Aaron was able to donate his body to the Univ. of Michigan and his brain to Dr. Gutmann’s Washington University lab. Within seven years the speed and accuracy of genome analysis increased so significantly that the progression of the brain tumor, a glioblastoma, could be tracked through its many genetic changes. A brief paper about the tumor appeared in the journal Neurology in late 2019. The family cheered. Take a bow, Aaron!
Friday, October 23, 2020
|"Patricia Relaying for Life" |
Oil on Canvas. 30" x 24". 2020.
While growing up in Jackson, TN, Patricia and her family had never heard of NF. Their doctor told the family it was just fatty tumors. When Patricia's brother was a teen, she was in her early 20s. He started having some serious issues and was sent to a neurologist and that was when the family learned exactly what they had. Patricia had a fairly normal childhood. Looking back now she can see some issues that were probably because of the NF. She and her siblings inherited NF from her mother. Patricia's sister and two brothers also had NF. Her mother as well as her sister and one of her brothers died from NF related cancer.
|Prep Sketch |
Patricia attended Tennessee Vocational Technical earning her LPN in 1974. She retired from nursing in 2015 the same year she celebrated 10 years as a cancer survivor by participating in the Relay for Life walk.
Wednesday, September 30, 2020
|"Kathy Climbing to Mt. Everest's Base Camp" Oil on Canvas. 30" x 24" 2020.|
Kathy Diane Wennihan was was born in 1960 in Fairfax, MO. After receiving her high school diploma from Oak Park Academy in Nevada, IA in 1978, Kathy attended Union College in Lincoln, NE. Kathy resided in Des Moines with her two most recent rescue cats, Eli and Delilah. Kathy enjoyed a long career as a Patient Care Technician with Mercy Hospitals in Des Moines where she was fortunate to have met and bonded with many kind and supportive friends.
Kathy had NF1 which manifested itself in many different ways throughout her life
Never a runner, Kathy completed a marathon while suffering through cancer treatments. She ventured with Above + Beyond to Everest Base Camp and was part of the Above + Beyond Cancer Team for Dam to Dam and the Des Moines marathon. She also participated in many indoor cycling classes.
Kathy was a tireless volunteer and was chosen for the Above + Beyond Cancer Award in 2018. Kathy has become a pillar of the amazing impact Above + Beyond Cancer can have on cancer survivors. Kathy passed away in 2019 following a lengthy battle with cancer.