Case Study #35 - Elana Scooping Ice Cream

Elana Scooping Ice Cream. 30" x 24" Oil on Canvas.

Elana loves ice cream — not just eating it, but scooping it. That was her summer job before starting college.

The years leading up to that point were challenging, exciting and interesting for Elana. She was diagnosed with Neurofibromatosis Type 1 at age 3 due in large part to her cafe au lait spots. Elana grew up in Texas where she enjoyed a childhood without medical complications. During a routine MRI when Elana was 11 years old, her NF specialist discovered a brain tumor. The surgery to remove it was successful, and she was released from Children’s Hospital in St. Louis on her 12th birthday.

Prep sketch

Having brain surgery made Elana more aware of NF and empathetic toward others with the disorder. She began sending personalized care packages to children in the NF community who were undergoing surgery or treatment for their tumors. Over the next two years, Elana would send over 100 packages to children in over 25 states!

Elana’s involvement in the NF cause grew as she herself grew. She served as a counselor-in-training at Camp New Friends (a camp in West Virginia for kids with NF), helped narrate a national video to raise awareness, and did fundraising by selling duct-tape wallets that she made herself. Most importantly, she advocates for NF research dollars on Capitol Hill in Washington, D.C. with the NF Network, a national organization that leads the advocacy efforts to find treatments and a cure for neurofibromatosis.

Besides scooping ice cream, Elana enjoys baking, working jigsaw puzzles, and traveling. She has visited all 50 states.

Midwest Artist Studio Project - Inside the Creation of an NF Portrait - Anne Noble

Anne Running the Boston Marathon - 30" x 24" Oil on Canvas. 2016.

This blog post is inspired by the Midwest Artist Studio project in which I was asked to document from start to finish one of my NF oil paintings. It was good for me to examine how I go about this project, how long it takes and just how indebted I am to the NF hero to get me photos, get me his or her biography and just be an active participant.

Example of the images sent

To start these portraits, I always ask the person to look through existing photos and if that doesn't work, then he or she needs to ask a friend or family member to take photos of them doing whatever we've decided would work well for the painting. In this case, Anne definitely wanted to be running or doing something connected with running. She had a lot of photos from her lifelong pursuit of the activity, but typically something about each one wouldn't work (for me) with them. Many of them were full body shots of her running which make for great photos, but lose too many details for me when I create the paintings. I need close up photos from only waist up and I like to have the person doing something with their hands if possible so it looks a little more active. I also do not want the person to be wearing sunglasses in the painting as the viewer doesn't get to see their eyes that way.

Initial sketch

Additionally, I don't want images of the person looking right at the viewer smiling or taking selfies. The whole painting project, in part, is inspired from Vermeer's paintings. His work is always a glimpse of someone in the middle of her work with us as onlookers. Typically the subject in his paintings are just people doing everyday chores completely unaware of our presence. In that same way, I wanted the NF portraits to just be us getting a glimpse into the lives of these NF Heroes that didn't look staged or stilted. We've all seen commissioned portraits, typically royalty or rich benefactors who gaze at us wearing suits or gowns standing in front of their stately mansions and/or possessions. Those are nice, but always have a hierarchy which suggests that they are slightly above us as a viewer. I want these NF portraits to feel more comfortable, more like this a friend you just haven't met yet.

I don't spend a lot of time trying
to make a nice even tone to the canvas.
I know I will paint over it later.

Anne and her family purchased the rights to a multitude of pictures from when she ran in the Boston marathon. Most of them, again for me, were just too far away. Some of them had people in front of her or she was smiling and looking at the camera. Finally, we found one that would work and it was really pretty good. I didn't initially like the dark shadow that her baseball hat was casting over her face, but I knew I could lighten up that shadow in the painting, eventually. When I printed out the picture for the painting, I used Photoshop to lighten all the shadow areas, so I could really see them.

Charcoal Drawing on Canvas

Before I do any painting, I always send a sketch. Sometimes I stay faithful to the photograph fairly well and other times I will completely put in a new background that fits thematically into the painting. This time, I liked the background of the photo but felt that the other runners were distracting so I got rid of them. I also liked the sign that sort of let the viewer know we were in Boston and that there was only 1 mile left to go--so a partial sign, sort of a clue that we as viewers are almost done with her on this journey too--and we, as viewers, can cheer for her to finish the race!

After I send the initial sketch to the participant, I wait to see what his or her thoughts are. This time, I lucked out and Anne really liked it with no changes or alterations. Sometimes the person will want a different background or wonder why I changed it or just have questions.

Once I get approval on the sketch, I transfer it to a toned canvas. I always tone my canvas with burnt umber. I have artist friends who will tone it in ultramarine blue, some will do burnt sienna or a combination of yellow ochre/ultramarine blue, etc. I think toning a canvas is a personal preference. I do it for two reasons primarily: 1. I like to get rid of all the white of the canvas so none of that peeks through in an annoying way while painting and 2. a toned canvas gives me a nice range to go lighter and darker. White canvases are designed to simply paint darker. I know en plein air painters who do it that way, but for me, I like toning it first.

Charcoal with Turpentine

Now it is time to transfer the drawing on the toned canvas. I know a lot of painters who will use projectors or they will grid the drawing or they will use Saral transfer paper. I have used all of those methods before depending on what I am transferring. Each has its benefits and drawbacks. I used the Saral transfer paper when I did the portrait of Loni Directing Cupids because there were so many logos in the background that I did not want to take a chance on messing one of those up. On Anne's painting, the background is so simple that I just did a loose grid. With the exception of the CTF logo everything else is negotiable and can be fudged. I do the entire transfer with a B grade charcoal pencil. B is a good grade because it isn't very dark and it can be removed with a kneaded eraser if I really need to get rid of something. I typically don't ever erase because I know that I will be painting over it soon enough anyways even if there is something wrong.

Starting to put in paint in the
areas that I know will need
several layers of paint.

After the charcoal has been applied, I go over the entire painting with a small brush and turpentine to solidify the charcoal into a watercolor-like paint sealing it to the canvas. At this point it is no longer a drawing on canvas, but is now really the basis for a painting. At this point I also know what needs to be done first and what will need coats of glaze. For this painting, the hat and blue tank top with the logo and the running sheet will need several coats. I also know that I will need to paint that white logo to get it really white. I tend to paint everything as saturated as it possibly can get, as if no light is affecting it initially knowing that I can always go back later and apply the affects of light to in the form of glazes and highlights. Sometime, the background will be very busy and I will paint those first knowing that I will be going over them multiple times (David Preparing BBQ Beef Brisket for example).

I then like to put an entire watercolor-ish thinned down layer of paint on everything just to establish a general sense of the color that will be there eventually. I know that I will do form painting later, but this is a good way of establishing a base. At any given time, there will be areas of the painting that are in the midst of thicker form painting (less painting medium and more paint) while other areas are still thinned down with oil paint and turpentine.

I usually just tape my reference picture
right onto the canvas so I can see it. I know
some painters who will work from the images
right off of their computer screens. I like to
tape the images really close so I don't have to
look too far while painting.

My palette consists of these standard colors and then I will add extra colors that are specific to the painting and cannot be mixed (like magenta, dioxazine purple or whatever if the painting needs that is unusual):

Zinc White or Soft Mixing White (I don't care for Titanium White and Flake white is toxic and really heavy)
Naples Yellow (Everyone questions that I use this and just don't mix it...we all have our quirks)
Yellow Ochre
Cadmium Yellow Pale
Cadmium Orange
Cadmium Red light
Cadmium Red Medium (Alizarin Crimson--sometimes)
Terra Rosa or Burnt Sienna
Cerulean Blue
Ultramarine Blue (Cobalt Blue sometimes)
Burnt Umber
Payne's Gray
Lamp Black (I use Ivory Black as well and sometimes Mars black)

I use Liquin as a painting medium. Again, many painters will question me about this practice because Liquin comes with Damar Varnish already mixed into it and Damar varnish will yellow after decades. This means I could mix my own painting medium or I could spend a lot more money on Maroger. However, I don't. At this point, Liquin is fine for me as are store bought heavy duty pre-stretched gallery wrapped canvases. Here is the rationale: when I was in college, I had no money so I could save money by buying and stretching my own canvas. As I got older and had children, I realized it wasn't money that was the main problem, it was time. As in I don't have any so what time I do have, I try to maximize it. I simply do not want to spend my time stretching and applying gesso to canvas if I only have two hours to paint at night after my kids go to bed. When I get a couple of hours to paint, I am ready to paint. Everyone has strong feelings about these topics: what kind of paint to use, what kind of canvas or linen to use, what kind of brushes to use, what palette of colors, etc. I used to be such a fussy painter as well and would only use Innerglow painting panels shipped to me from New York and I would only use Vasari paints, filberts, etc. Over time I have really mellowed out about all of these "rules". Honestly, I mix so many different brand of paints these days it is ridiculous. I do like to make sure I check the permanence rating on the labels, but I have lost my brand loyalty that used to be so important to me years ago.

I typically do not wait this long
to get the background painted in.

I typically have more than one of these portrait paintings happening at a time. I find that I like certain areas to dry before I continue, so I will usually jump over to a different painting and work on that one for awhile or work on a sketch, etc. Ideally, I have three of these paintings all going on at one time in some stage from initial prep to final form painting. That way there isn't a day that I can't work on something. If I am getting close to one of the paintings being finished, I will tend to send emails to a new participant asking if they have had time to get their photos taken, etc. If there is one thing I hate it is waiting which is ironic because living with NF is all about "wait and see".

I will send out multiple emails to different potential portrait candidates because not everyone has the time or family member available to be able to get photos quickly. Or they may just not be interested in the project and that is okay too. There are many people who have gone years and will send me a snapshot every once in awhile asking,"How about this?" It usually doesn't work. These paintings really need to be done from someone with a good camera who took good close up photos.

I spent a long time redoing
an impressionistic back drop
and remembered all the
American flags from other
reference photos, so I added it
at the last minute.

I've uploaded pictures of the progression to show the development of the form painting all the way to when I decided to add the American flag in the background. I thought it added a nice touch to what was a rather boring background. Plus I had seen flags in so many of the other photographs Anne had sent, so it was nice to incorporate it into her portrait. I painted the entire background very light in value, saving all the contrast and vibrant color for her. I also painted it somewhat loosely, saving all the care and careful paint handling for her as well.

During the time I am painting the subject is working on his or her biography. I will always display their biography next to the painting. There is not a lot of room on the placards, so I keep the biographies to about 300 words. This can prove to be difficult for people battling with NF as just one surgery or experience can take up that amount in a heartbeat, so they learn to edit or just consolidate all their surgeries into one paragraph. They typically include what life was like growing up with NF and any struggles they may have endured and what they are doing now to raise awareness. Each person is really different on what they want to share. Some people will not talk about any struggles and only talk about the positive impact they are doing today while others have no problem sharing stories about being bullied or a difficult operation. I think writing a biography is very personal, so I let them decide what should be shared and what they want to keep private.

My paintings are simply a way for me to introduce amazing individuals living with NF to a new demographic who, most likely, has not heard of the disorder. In that way, I am just making introductions using oil paint. If my painting is interesting enough, it is my hope the viewer will then read the biography and learn more about the person. If they are interested in the person, they might just want to learn more about Neurofibromatosis and perhaps go one step further and donate to the Children's Tumor Foundation or NF Network.

I have had people just ask why I don't take photographs or just have people send me pictures they've had taken and just use those? After all, there would be an immediacy and quickness to it and maybe even a farther reach. Besides the main issue of consistency of the image, I like the process of painting and talking via social media with these individuals while I paint their portraits. Sometimes depending on where they are from I find myself using Google Translate to try to correspond with them. There is a satisfaction for me in the idea that a collaboration can happen even when there isn't a common language between us.

Lastly, there is a fairly well established tradition of portrait painting and most people know that the paintings take time. They also know that portraits are meant to commemorate someone. It is just that with this project, I as the artist, decide whom to commemorate and that is so empowering. I enjoy getting to know each participant. I'm not looking for a quickie awareness campaign that is also forgotten within a month. I am fine with taking my time and painting a portrait that the person will enjoy and remember for quite some time. I am not in a rush. Oil painting is a slow process and I don't plan on going anywhere until a cure is found so I am not in any hurry to move onto something else. Slow and steady wins the race, and in this case, the Boston Marathon.

Case Study #33 - Anne Running the Boston Marathon

"Anne Running the Boston Marathon" 30" x 24" Oil on Canvas

Anne Shigley Noble has defied the odds most of her 29 years. Diagnosed with Neurofibromatosis type II (NF2) in Atlanta at 7, she had her first surgery in LA at 9, when a tumor paralyzed one side of her face. Against the odds, she came out grinning though deaf in the right ear. Battling NF2, she became a high school runner and swimmer, and dreamed of someday running the Boston Marathon.  She had more surgeries her senior year, in Boston for spinal cord tumors which came out without damage, and in LA for an auditory nerve tumor that deafened the left ear too. She finished high school and started college in Tennessee, with help of a captionist, and ran college cross country. In her freshman year she ran her first marathon with classmates cheering her on, then took medical leave to get her Auditory Brainstem Implant (ABI). 

prep sketch

Anne transferred to Rochester Institute of Technology / National Technical Institute for the Deaf (RIT / NTID). She had summers in DC for sign language classes at Gallaudet, then NC, CO and PA for YMCA and camp jobs. At RIT, she met Steve, and they married after graduation. She continued running marathons, and with Steve added triathlons. She started a master in early childhood special education but after their wedding, Steve had an offer in NH. Now they are in their second house, in rural Meridan, NH, with a grand view of mountains. Steve is a telecom engineer at Dartmouth College, while Anne is a paraprofessional in early childhood special education. Just before turning 29, Anne fulfilled her dream of running the Boston Marathon - in the mobility impaired division – and raising over $5,000 for NF research with the Children's Tumor Foundation. 

Case Study #32 - Darin Providing Technical Support

Darin Providing Technical Support. 30" x 24" Oil on canvas

Darin Donahue lives in southeast Michigan and works as a freelance broadcast technician. He does a lot of work for the local PBS station along with working a lot of sporting events for various sports networks. His favorite being the Lions / Bears rivalry game. When Darin was born, he had a number of  café-au-lait-spots. His mother always said they were "the doctors thumb prints,” but he wasn’t officially diagnosed with NF1 until he was about 13. No one else in his family had it, so it was caused by a spontaneous mutation, as half of the NF cases are caused by that.

prep sketch

School was a constant struggle for Darin. Having dyslexia made math and reading problematic and something he avoided at all cost. He struggles with diminished concentration and a very poor memory, and has balance issues.  It wasn’t until about twelve years ago that he noticed his skin tumors increasing but waited a few years to seek out an NF specialist to have them checked out. Truthfully, he really didn’t think much about it as he was leading a relatively normal life, until his oldest brother inquired into why did he have all the skin issues and tumors. His brother is about eight years older than Darin but had no idea that his youngest brother had NF or even what having NF meant. Even though Darin was seeing a top specialist in the area, his brother was convinced he wasn't doing enough to learn about it. At that point, Darin became actively involved with the NF community, and started going to NF sponsored events, seminars, focus groups and NF walks. In 2015 & 2016 Darin participated in the Cupids Undie Run in Detroit raising $600 and has already signed up to run again in 2017.

Case Study #31 - Emily Tossing a Water Balloon

Emily Tossing a Water Balloon. 30" x 24" Oil on Canvas.

Emily Pfeiffer was diagnosed with NF when she was three years old. At the age of nine learning difficulties prompted an MRI which revealed a brain tumor. The tumor was not responsible for her learning difficulties but it did require surgery and radiation therapy.  She did relatively well until the brain tumor returned in her early twenties. The tumor was successfully removed but she went on to develop tumors deep within both the right and left sides of her neck. She endured multiple surgeries and life threatening complications throughout her twenties and thirties.

Prep Sketch for Emily Tossing a Water Balloon

Her unbelievable positive attitude and resilience despite her NF has been a source of inspiration for her family. Emily has walked in three half marathons and the Cupid Undie’s Run to increase public awareness and fundraise for the Children’s Tumor Foundation. She currently volunteers at Tabitha Health Care in Lincoln, Nebraska. Spending time with the elderly is a joy for her and the residents she interacts with. In April of 2016 she received an award at Tabitha’s annual volunteer recognition event. The award honored her for making and keeping her commitments to her volunteer work.

Emily would be the first to tell you living with NF is very hard. She doesn’t seem to worry about what her future holds. Living every day to her fullest despite the physical and cognitive challenges continues to be her primary focus.

Case Study #30 - Derrick Living Rugby

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  "Derrick Living Rugby" 30" x 24" Oil on Canvas

  

  Prep Sketch for "Derrick Living Rugby"

  Derrick Helton has seen and learned a lot from his condition with NF2. Coming from a small farm outside a village of 110 population called Tuscumbia MO, he did not know he had NF2 until he was 18 and decided to join the Marine Corps. During processing he failed the hearing test and when pursuing a waver to join the doctors found tumors on both acoustic nerves. At the same time a large tumor in the C3-4 regoin of his neck area spinal cord was found and severely pressing on his spinal cord. Obviously he did not get into the military as he had planned and could not work his trade of concrete construction anymore, but his life was about to change dramatically in another way. Just after being found emergency surgery was decided to prevent a serious injury at that level which could be life threatening. During surgery another tumor in lower spine combined with spinal swelling from neck surgery resulted in paralysis from about the rib cage down. The nerve in which the neck tumor was connected caused some upper body function decrease as well. After a long recovery and reflection the signs of NF2 had been present from very early age, but always misdiagnosed and never found. Now living as technically a quadraplegic and wheelchair bound, it was decided he needed to find a new path and way of life. He found the sport of wheelchair rugby as well as a college, The University of Arizona, which asked him to come play. It was the beginning of a new life and great adventure. Not long after he became good enough to represent Team USA and won many gold medals, world championships, and a bronze medal throughout his ten year run with the team all while traveling the world playing. In 2015 his career was cut short when once again NF2 showed its evil side and started causing seizures, a massive decrease in hearing and other issues. Now retired and trying to fight the new issues he has seen a dream of a new journey that involves community outreach as well as NF1 and NF2 awareness. Blessed with a given cup of lemonade from a lemon he feels its time to use what he has been through as a foundation to help others in bad situations pursue life to the fullest! Currently he lives in Tucson, Arizona with his amazing wife Krista, and their awesome daughter Leila who is 2 years old. Soon he will be having his first brain surgery to combat the siezures and also plans to have an ABI placed to help his poor hearing. He will continue planning his dreams and takes it one day at a time. It's time to become an advocate for NF, NF2 and all who suffer. It's also a time to use the gifts he has left to do so in new and creative ways. Follow Derrick on Twitter: @derrick_helton

Case Study # 29 - Khanyi Swinging on the Porch

Khanyi Swinging on the Porch - oil on canvas. 30" x 24"

Growing up in South Africa where Neurofibromatosis is very rare, or just goes unnoticed, and having gone to an all girls’ school, where one’s physical appearance is under constant scrutiny was a challenge for Khanyi Shabalala.

Prep sketch

Khanyi was the first and the only carrier of NF in her family so it was a new experience for everyone involved. The first time her mother noticed birthmarks on her was when she was five year old. At first her mother found it a bit peculiar but not alarming. She noticed that they continued to develop and multiply until Khanyi had all these birthmarks suddenly developing all over her body and yet her twin sister did not. She didn’t know what was going on so the marks were put under the broad “birthmark” umbrella. Around that same time Khanyi developed absence seizures but she is still not sure if there might have been a correlation between that and her NF. At 12 years old Khanyi finally went to the dermatologist the “birth marks” were continually growing, continually changing and now they were accompanied by tumors. Those "birth marks" are called cafe au lait spots and are one of the main indicators for a possible Neurofibromatosis diagnosis.

Eleven years ago while Khanyi was studying Political Science at the University of Westville in South Africa she came to the realization that it was not her calling, not something she was destined to do for the rest of her, life so she packed her bags and moved to the United States. When she arrived she enrolled at Otis college, a school of art and design and worked as a freelance stylist. At Otis she met her future business partners Amaka and Jason. Together they turned their innate creativity and vision into something that was truly their own, something they could be proud of. That was how Khanyi became the Fashion Editor and one of the founding members of Afrostyle Magazine.

Case Study #26 - Maximilian Shopping in Thailand

"Maximilian Shopping in Thailand" 30" x 24" oil on canvas.

Maximilian Eugene Salvador Moran lives in Duffield, a small village in the countryside in Derbyshire in the United Kingdom. He found out that he had NF when he was 6 months old due to the large cafe au lait spots on his leg. At first he didn't know the full gravity of the situation or the effect it would have on his life but didn't let it stand in his way! As he grew up he had many problems fitting in with others and a having a 'normal' way of life. Even though he had NF he still tried to fit in with the other kids and do as they do. Including football clubs, chess clubs, singing and acting schools, piano etc.

NF affected him in some ways. Multiple areas which were always painful and have required surgeries, medication and regular scans to check on all tumors and check nothing was wrong internally! Also had to deal with bullies for most of my childhood and even today he still get the odd buffoon still trying to dampen his spirit. He had spinal surgery at 20 years old before travelling to Tenerife to do a summer season working in bars.

Prep sketch

Maximilian feels very fortunate to live where he does as he has the NHS which despite its faults is a great healthcare system for someone suffering with NF. They keep me checked up with regular GP appointments and he travels to London to see the specialists. Maximilian has also had a career spanning many fields: bricklaying, security guarding, landscape gardening, and now a fulfilling career in catering. Currently, Maximilian works as a chef and has worked in some of the nicest hotels in the areas in which he has lived. He has done a lot of travelling: backpacking in south east Asia and viewing the northern lights in Iceland. After his trip to Asia, he had to come back and have a tumor removed from his sciatic nerve. 

Maximilian is looking to the future, "I have ambition to open my own restaurant one day. I want to open a.little tea room and also provide an external catering service for weddings, birthdays and other personal events!

Case Study #28 - Nena Picking Oranges

Nena Picking Oranges. 30" x 24" Oil on Canvas.

MaElena (Nena) Gomez has NF, lives in Monterrey, Mexico and has been married 40 years with her husband Carlos Garcia. It wasn't until she was married and already had two daughters that she found out her diagnosis. In Mexico, not much is known even to doctors about neurofibromatosis. Her daughters and four grandchildren are the engine of her life. Nena's hobbies are cinema, enjoying nature, and the face and happiness of her grandchildren.

Nena Picking Oranges

One day Nena was talking with a young person about suicide because life with NF is difficult. He felt that no one would want him, even had friends that didn't take to the idea of forming a tumor by his face. In Mexico there just is not a big priority placed on NF and people do not go to specialists because they have it. Over time, Nena realized just how many people also had NF and to her great surprise throughout the world there is a lot of information about it. There is also a lot of misinformation as well and that is where she decided to get out and start working at raising awareness. Nena has spearheaded the one protection law draft that has to go through the congress of Mexico. She has met with two senators and in the meantime she interviews and continue to fight to make society aware about the disorder. There is more information for all doctors, patients, families and society in general that are like them with a genetic condition. She finds others with NF and together in her words, "we laugh, we cry, we must work to live, or the same needs as the rest of the world. My challenge is to keep working at it, in honor of my father who inherited it, to patients to keep hope alive, and to know that we also have a challenge to work together for attaining the transformation of society. for a world without DISCRIMINATION more aware, and we are all happy fundamental right of every human being."

Case Study #27 - D. Anthony Lifting Weights

D. Anthony Lifting Weights - 30" x 24" Oil on canvas

D. Anthony Evans  knows what it takes to face down life’s biggest challenges and beat them. As a child of a single mom, D. Anthony was born with Neurofibromatosis (NF) a rare genetic condition where dangerous tumors grow on nerve tissue. Often benign, they can, however, become malignant, resulting in what is called a Malignant Peripheral Nerve Sheath Tumor (MPNST). A MPNST is a terminal aggressive sarcoma form of cancer.

Prep Sketch

In 2012, D. Anthony was diagnosed with MPNST. This manifestation has had him had to endure nine life-or-death surgeries, the first seven of which were completed within the first eleven consecutive months. To date three hundred and twenty-five tumors have been removed from his body with the largest being two pounds and 7cm. The doctors gave D. Anthony six months to live. Life expectancy post operation for MPNST is zero to six years. Six years if detected and caught early and zero ninety-nine percent of the time when the tumor is 2 lbs 7cm like his measured to be. But there are those who survive.

It has been over four years since his surgery and in  D. Anthony's words "I'm blessed and grateful..So don't you dare think about giving up. I am your tangible proof that everything is possible! So no matter what your facing, keep your hands up, your head tucked and don't you dare stop swinging until it's over." #Train2Live #Eat2live

Case Study #23 - James Racing in Uniform

"James Racing in Uniform" 30" x 24" Oil on Canvas. 2016

Prep Sketch

James Mitchell is currently known as "Oklahoma's 5k Running Firefighter." At 51 years old NF is not getting him down or even slowing his pace. James spent his first 50 years in Bristow Oklahoma and has NF1. The tumors didn't show up on him until his late 20's. He worked for Kwikset Black & Decker from 1983 to 2005. At the same time he was a volunteer firefighter from 1987 to 2008 when he retired from the fire department. One time, while living in Tulsa, James was playing basketball at the local YMCA as part of a work team when a few people began asking him questions. The questions centered around the bumps covering his body. Honestly, James didn't really know what they were from and all he could say was that it was something that both his father and grandmother also had as well. His grandmother has them all over her face whereas he and his dad have them more over their body. As far as his face or anything noticeable, there is only one on his chin. After the basketball game, the company doctor took a look at him and informed him that he did, indeed, have NF. Many years later, now being aware of the disorder, James started to notice more people in his town of Bristow living with it. James now works at the Sapula Atwoods which is a family owned store that deals in power tools, home repairs and lawn and garden supplies. One of Jame's co-workers who used to previously work there also had NF. A few years ago James walked in the Tulsa Oklahoma NF walk in his fire gear and with "NF Team Benny" on his air tank. Benny had wanted to be a firefighter but sadly never fulfilled his dream as he died from NF complications. Jame's hope is that Tulsa, Oklahoma will have another NF walk each year as he is eager to it again and raise awareness. .

Case Study #25 - Ashok Chatting with Friends

"Ashok Chatting with Friends" 30" x 24" Oil on Canvas

Ashok Shrestha, who is currently 54, lives in Kathmandu, Nepal and suffers from NF. In particular he has a an extremely rare facial tumor that can become a life threatening condition if not treated. When he was born, he did not have this tumor in the capacity as it appears today. It first appeared as a very small and negligible lesion, similar to a mole or skin tag at the corner side of his right eye. Later when he was one year old, his late father took him to have surgery at the Shanta Bhawan Mission Hospital in Nepal under the supervision of a visiting doctor from the UK. The second major surgery was undertaken at the Bir Hospital in Nepal when he was 12 years old. After that, he has undergone two more major surgeries in Patna, India.

Ashok has completed his Master in Commerce in Accountancy and has been working in the computer industry for many years. The tumor, however, has been increasing in size an

Prep sketch for the oil painting
(photo reference courtesy of Kristina Allen)

d turned into a huge problem which has landed him in this present situation. Ashok has no work or job anymore because of his face and has been harassed by people. After his father died, the whole responsibility of taking care of his mother is upon him. His mother was suffering from paralysis caused by a brain hemmorhage. His parents’ small property (house) has gone toward the expenses of his mother’s treatment and daily expenses for routine life to survive. Now, Ashok has the enormous problem of being totally bankrupt.

Since then he has been faced with physical problem of his facial tumor as well which has made eating and conversation problematic along with his economic condition Therefore Ashok has made a video on youtube to request to the public for raising funds so he can have a normal life in the future. Because it is so difficult to receive adequate care in Nepal, it is Ashok's goal to raise the funds necessary to permanently relocate to the United States, become a US citizen, and seek the surgical expertise of the highly skilled Dr. McKay McKinnon at St. Joseph's Hospital in Chicago, IL. Ashok has so far found good response and help from many people of entire world which as given him hope. He still needs a large amount for his treatment. He will need four major surgery and it has been estimated for $35,000 for first surgery and now he has collected around $15,000 so he is making good progress! Ashok is requesting for all people to help him by donating for his surgery.

Please watch the youtube video here: https://www.youtube.com/watch?v=TlvHFszYUQU

Viewers can donate to help Ashok by donating here: https://www.gofundme.com/together4ashok

Or you may contact Ashok directly to see how to help:
Name: Ashok Shrestha
Address: Dhobighat, Lalitpur
Country: Nepal
Mobile /Viber: 9841 530 741
Skype: ashokshresha
Email: ashokshresha@gmail.com

Case Study #24 - Loni Directing Cupids

"Lonit Directing Cupids" 30" x 24" Oil on Canvas

Prep Sketch for 30" x 24" oil painting.

Diagnosed with NF1 at the age of 6 months, Loni has undergone over 13 surgeries to correct the pseudoarthrosis in her tibia and to have tumors removed. It wasn't until 2013 that Loni discovered there were people in the world advocating to find a cure for NF. When she and her husband were starting to plan a family, they learned about the Cupid's Undie Run and their determination to End NF through raising money for the Children's Tumor Foundation. She immediately wanted to jump on the train and became the Race Director for Mason City, Iowa. Since Mason City's inaugural year in 2014, North Iowa has raised almost $190.000 ear marked for research to END NF.

Case Study #22 - Woan-Harn Running a Race

"Woan-Harn Running a Race" 30" x 24" Oil on Canvas

Woan Harn lives in New Taipei City, Taiwan, which is a beautiful and humane country, welcoming to friends to come to Taiwan to vacation. She recalls a time when in her youth, she found herself with the realization that she appeared different (café au lait spots). At the age of 22 and after some searching and medical examinations, she learned that she had neurofibromatosis. She had a very large tumor on her neck. The doctors said at the time: there is no medicine to control and no treatment. They were not going to operate on it as it was too risky--the tumor was intertwined with nerves in her neck.This left her feeling quite depressed, almost every night wanting to tear her face, feeling so miserable.

Prep Sketch for Woan-Harn Running a Race (我的生命歷程與自我價值)

Woan-Harn was lucky because as well as close friends came the support and encouragement from the Sunlight Foundation and Accton Public Museum assistance, so that was like having another NF friend. These organizations provide the opportunity for fellowship together and share feelings with each other. The Sunlight Foundation and the National Taiwan University, Chang Gung Memorial Hospital also holds occasional free clinic and medical lectures, through talks and clinic activities, so the NF community can better understand ourselves.

Because of this, Woan-Harn thought she wanted to help more people, and therefore decided to engage in Social welfare work. She joined the Spiritual Child Development Center, which gave her insight into different life experiences, and her colleagues also gave her a lot of encouragement and positive support, and empowered her to believe that feel that she can do the things she want to do, and have the ability to help other NF friends!

Woan-Harn feels very fortunate in assisting the Sunlight Foundation, Accton Public Museum, by recruiting several NF friends, asking professional social workers, psychologists, and even a theater teacher, to help the foundation focus on activities around:leadership, empathy and care, etc. In the process of these meetings, everyone grew lot, and after nearly three months of intensive training and meetings, finally gave birth to a new NF centered charity: "Peas Dragon Association" (Sunshine nerve fibroma patients Association). In Woan-Harn's words, "I hope to be able to scale new heights, more patients understand the operation and service groups, want to work more with their own specialty, so then to school in professional courses, in addition to their own work of in progress, the practice of social work courses, let me on the operation of non-profit organizations and patients will be more understanding, hopes one day was officially established as a corporation aggregate organization."

Sunshine neurofibroma patients Association, after nearly four years after the operation has really helped, because Li Ming Ren a physician at National Taiwan University Hospital, (which is a deep sleep fraternity organization) has been unable to meet many NF family. This association has helped and still wants to upgrade to better and more comprehensive services, and Fellowship members also throughout the province, want to build our strengths, to form associations, the Association through organizational strength, help more Taiwanese NF patients to see their hope for the future.

Under the assistance of the Sunlight Foundation, Accton Public Museum, National Taiwan University, Chang Gung Memorial Hospital, was officially established in 2010 the Corp. Taiwan neurofibromatosis association ( http://www.nf.org.tw/).  This nonprofit's aim for NF is to care and encourage patients to support each other, in medical research on the breakthrough, and play the role of the advocate in health education in the community, so that the public, government agencies will experience more empathy, acceptance of NF, and help those with NF to make friends regardless of in life or work, social in, can enjoy equal treatment.

In Woan-Harn's words:

Let yourself grow a lot, no longer suffering from illness, more courageous in the face of their future life! To pursue the life you want!

In order to make myself more healthy and more dynamic, I began to participate in road race events, from three kilometers, five kilometers, seven kilometers, ten kilometers, under the cumulative twelve kilometers completed (First half horse) my life in 2014 twenty-one kilometers. In order to prepare 21 km road race, I attended the training group, as well as its own practice and adjustment. I think if you believe, you can achieve the purpose. In the running process, I am aware of  my breathing, I pay attention to the pace and watch my mind, but also to enjoy the wonderful scenery on the way of each race.

Persistence in the end, let me have the courage to not give up a successful road race of my dreams, I think, a miracle of life, is to rely on myself and create success, people have unlimited possibilities.

Let more people know NF, with our stories, hope for the future in Taiwan, to encourage more people, thank you for Rachel.

<藝起來串臉> https://www.facebook.com/NF0517family/

＜社團法人台灣神經纖維瘤協會＞

 http://www.nf.org.tw/

I think if we really want, we can be able to succeed! My future is the most beautiful!

Know they are not alone, because I want to share the joy, to my friends!