Case Study #6 - David Chalking the Driveway

David Chalking the Driveway. 30" x 24" oil on canvas.

I noticed the fact that David is sort of cramped when he does his chalk drawings. He does not spread out or look comfortable. When I asked him, he mentioned that his arms and legs start to hurt so he can only work for a little while at a time. With that in mind, I wanted the composition to also feel a little cramped to the viewer. This is typically a "composition no-no" but, then again, luckily for me, there really is no history of compositional discourse when deciding to paint people drawing with chalk on driveways. hahaha....

Rough layin after multiple
shoots and ideas. 30" x 24"

Stage One - 1st Layer of Color,

David has had to go through about 3 photoshoots with me already and I finally settled on the photo below with some adjustments. I hope his close friend isn't going to kill me when I asked for one more revision to the photos after receiving feedback this past June on my portrait project.

For the most part, most the artists who viewed my work preferred when the subjects "dressed up" for their portrait, noting that Joan Hollis and David Oosterloo both had interesting patterns to their clothing which made the portrait seem more formal. This subtle fact also makes the portrait a little more interesting visually to the viewer.

So, you can see how I gave feedback to David to redo his photo shoot, complete with getting rid of the blue t-shirt and replacing it with a long sleeved button up shirt with rolled sleeves. Mostly rolled sleeves because I don't really want him getting chalk all over his cuffs! Also, it is quite interesting to try and direct photoshoots via Facebook messages, but somehow we always seem to work together to get these done. In the end, I went back to the blue shirt because I think the subtle tie-in to the Children's Tumor Foundation is a nice touch.

David routinely participates in NF walks, rallies and such and is one of my biggest fans. Because of NF, David has a degenerative disk in the lumbar portion of his back which contributes to his spinal stenosis. He also has Chiari I Malformation with a syrinx to which he had to undergo surgery. The results of the first surgery didn't turn out very well, so he had to undergo the surgery again. Besides being a huge supporter of the Children's Tumor Foundation, he also finds time to spread awareness by his huge NF sidewalk chalk drawings. The drawings usually spell out "Cure NF" and can take up the entire length of his driveway.

Portrait Practice from Life

I have been painting portraits from life in either 2 or 3 sessions each week. So, while these aren't really completed portraits, they are all studies done from life. I am making this part of my weekly painting regiment so I can continue to improve my observational skills and have this complement the work I am doing using photographs.

Fran - 3 sessions

Kristin - 2 sessions

Doug - 3 Sessions

Bart - 2 sessions

Back on the Easel (and floor)

Most of my paintings need to be reworked a bit.

During the residency in June, I had both my past advisor Tony Apesos, and current advisor Laurel Sparks, point out some aspects on each of the paintings to consider. Additionally, I had my first meeting with my mentor, Stephen, last week and he went through on each of the paintings and discussed the areas he felt were problematic. Both he and Tony thought I needed to repaint David's hands on the Lego piece, so I will be taking photo of my husband's hands fumbling with Legos to see if I can get those to be working a little better.

There is also the reworking of Reggie's cup to make it more visually interesting, Jeff's face to make it more rounded, David's head and skull rework, Frank's t-shirt to glaze, Joan's arm to rethink values on and also some more subtle tone variations on her face along with David's face.

These small changes to each of the paintings may or may not be very apparent to most people, but I'm hoping that these little alterations will help make the work better. I am also remasking and redoing all the edges in white and painting over my signature.

The decision on whether or not to have a signature is a strange discussion, indeed. Artists were anonymous for years until the Renaissance. Giotto is one of the first artists to decide to sign his work and start the notion of the individual artist. Now, why we have decided recently to eliminate the signature is curious to me. I'm not sure I care all that much, I just find it curious. Are we all channeling our inner Roland Barthes and deciding that authorship is truly dead or is just an aesthetic choice? I don't really know, but I like these paintings better without my signature anyways, so maybe I just lucked out.

The Doctor Will Be With You Shortly

60 x 48 oil and collage on canvas.

The weight of waiting....

At some point you've been at the doctor's office waiting with your child for the physician. First we all wait in the waiting room amongst other parents and patients. We might make small talk with someone if they smile at us first. Other people in the room will do everything possible to not make eye contact. I think IPhones were created just for this purpose. IPhones and any Smart Phone lets people delude themselves into pretending they are busy. Plus even if they are not doing anything with their phones they can make the rest of us believe that they are and then they do not have to make any eye contact. I understand why people do not want to make eye contact or small talk. They don't want to be there. I don't either.

Updated April 22 -Thought I should take a pic of the
mighty sturdy frame and what it looks like stretched.

I do not have a fancy phone. I do have a sketch book. So, I just bury myself in that. I wear a baseball cap. Baseball caps are great because people cannot see what I am looking at. If they think I am drawing them, I typically make sure they see me looking at the tv screen and then they are convinced I am not sketching them. Once I'm convinced that they are again uninterested in what I am doing, I go back to sketching them.

After at least an hour of waiting in the bland and sterile waiting room, a nurse will come out with a clipboard and tell us to go to a room. Here's where the fun starts. That nurse will come in as well and ask some standard questions. Typically she has already filled the fields before I have even answered. Sometimes for fun, I like to pause and pretend like I am really thinking about the question and then I say "Funny, no one has ever asked if my son is allergic to latex...no...no, I'm quite certain he is not".

"The Doctor Will Be With You Shortly"
72" x 48" oil on canvas - lay in stage.

Typically, I just wait. And my son waits. And my other son waits too even though it is not his appointment. After another good half an hour or so the physician comes into the room and pulls out the rolling chair. Physicians enjoy sitting on rolling circular chairs. They like to wheel around the room. I like those chairs too and so do my kids. I, however, do not look nearly as cool rolling around on them as the doctor does, perhaps if I got a lab coat and clip board I could pull it off. While waiting, I let my children sit and spin on them. When I see the doorknob turning I tell my boys to knock it off so I can have the appearance of a good parent who has well behaved children who sit patiently with their hands folded.

The physician will do an exam and utter terms and numbers to his assistant. The assistants are then given instructions about what to do next for my son's exam. The physician leaves. The assistant leaves.

We wait.

The assistant comes back in and administers drops, an IV or whatever is necessary. They typically ask if we want to watch tv. We search for cartoons. My boys are tired of waiting. They fidget. They start staring at all the drawers and tools that they are not allowed to touch or play with.

We wait.

2/7/13 Spent the past 5 days going through medical files.
Transferred them to the canvas as the wallpaper and flooring.

Later the physician comes in. I can usually tell when they've looked at the report prior and when they have not. I try not to call them out when they haven't, so I will say "I'm fine waiting if you'd like some time to read the radiologist report that I had sent over to you earlier in the week". I'm not saying it to be a jerk, I am saying it because I would prefer they really read it rather than try to rush through the exam to get to the other fidgety family waiting in the room next to me.

More tests.

The physician and assistant leave.

We wait.

The physician comes in and tells us some good news. He or she will always tell you good news no matter what. They must learn that in a class in medical school. Always find something positive to say first. Then he or she minimizes what might be bad news. They will use terms like "let's keep monitoring"...and "possibly another surgery".

They say this to at least plant the seed so then at the next appointment it won't seem like dropping a bomb onto the patient. It is how I would do it too. I don't fault them at all. My son has wonderful doctors who are looking after him. I trust that he is in good hands. Of course, I trust that because it is also what I want to believe. No one wants to think "Did this gal get last place in medical school because she seems like a real doo dah".

And what, again, do we do?

What we do best. We wait. We watch. We monitor and we schedule another exam. Then the cycle starts again.

And we just simply

Wait.

Case Study #5 - Jeff Painting a Canvas

"Jeff Painting a Canvas" 30 x 24 oil on canvas

There are so many people affected with NF, but I have a special place in my heart for a couple of moms that live near by. Not that they are working harder or better moms or anything like that, but for some reason, it was nice to know that there were other moms dealing with raising a child with NF living reasonably close to me.

One such family are the Hansons of Overland Park, KS. Jeff Hanson was born with NF. Jeff's NF was due to a spontaneous gene mutation, so Julie and her husband, Hal, decided to just invest all of their energies and love into Jeff and just accept the diagnosis and embrace whatever Jeff's interests led to.

I am now going to briefly share Jeff's story (which a more comprehensive bio can be found on his website)

Lay in stage - 30 x 24 oil on canvas

Because of the NF, Jeff is visually impaired from an optic nerve tumor (he nick-named "Clod". The tumor started causing severe vision loss in 2005, and Jeff received radiation and chemotherapy in 2005-2006. Despite his low vision, Jeff sees well enough to continue creating original artwork for several charities, as well as commissioned pieces.

Jeff never had a "pity party" about his medical condition. He kept a great attitude throughout his treatment, despite losing his hair and all the usual "chemo" side effects. Jeff said good-bye to his home school friends, and spent three years at the Kansas State School for the Blind. He took all of this in stride, and used humor, creativity, and a headlong immersion into his artwork to defeat "Clod." On his last day of radiation, Jeff showed up for treatment in a TUXEDO! "Clod" was not going to win--or be taken seriously. Following that treatment, a helium balloon launch in our front yard signaled "farewell to Clod" and a new page of life.

Jeff started painting watercolor note cards in the Spring of 2006, when he was 12 years old. It was a hobby and pastime for him, since his visual impairment prevented him from doing sports and the usual kid stuff. Jeff's art was totally abstract, with bright bold colors. His vision did not permit him to create any concrete images. But his color combinations were explosive! Jeff sold the note cards at "Jeff's Bistro," a glorified lemonade stand he set up in his driveway in the Summer of 2006. Jeff painted and sold over 5000 note cards that summer, along with mom's baked goods, raising over $15,000 for The Children's Tumor Foundation, to help fund research for Neurofibromatosis and optic tumors.

Since that time, Jeff has moved into larger works using acrylics on canvas, with proceeds benefitting charities that have "touched his life." Jeff also donates paintings to several of his favorite charity auctions--raising as much as $15,000 each! Throughout his career, Jeff has painted over 800 original works. He is close to raising almost one million dollars and he is only nineteen years old. Now, that is inspiring.

Jeff Hanson - Watercolor, 24 x 18. 2012.

I have already painted Jeff, like I have the others for my Many Faces of NF project. So, in keeping with my idea of painting the person and having NF play a secondary role, I asked Julie to take pictures of Jeff while he worked. I went to visit the Hansons and was visually stunned by the studio. Julie has everything all organized and categorized. Ohhh...how I wish someone would come organize my studio, mine looks more like a tornado came through. But, I digress.

Jeff's mom Julie is amazing. She completely focuses herself on the career of her son's art and is tireless in promoting him, getting supplies, going to charity events, promotion and marketing. I think Jeff is very lucky to have such a mom. Although, since I am also a mom, Julie is very lucky to have such a tender and loving son as well.

I like to talk with her because Jeff is exactly ten years older than my son. So, she and her husband have already walked this path and they are a source of comfort, hope and inspiration. I admire the entire family and my only reservation is that I hope my painting will do Jeff justice.

The Art of Facebook -- Relational Aesthetics

In the past few months, I've had a two different advisors recommend Nicolas Bourriaud's "Relational Aesthetics". Relational art or relational aesthetics is a mode or tendency in fine art practice originally observed and highlighted by French art critic Nicolas Bourriaud. Bourriaud defined the approach simply as, "a set of artistic practices which take as their theoretical and practical point of departure the whole of human relations and their social context, rather than an independent and private space." The artist can be more accurately viewed as the "catalyst" in relational art, rather than being at the centre. The artwork creates a social environment in which people come together to participate in a shared activity. Bourriaud claims "the role of artworks is no longer to form imaginary and utopian realities, but to actually be ways of living and models of action within the existing real, whatever scale chosen by the artist."

In relational art, the audience is envisaged as a community. Rather than the artwork being an encounter between a viewer and an object, relational art produces intersubjective encounters. Through these encounters, meaning is elaborated collectively, rather than in the space of individual consumption.

In some sense, I view my "Many Faces of NF" project in this way. I am using social media to meet others with NF (and without FB there would be no way possible to do this). Then after the person has fundraised or done some sort of NF awareness campaign, I paint their portrait. And, what I am really doing is simply being a conduit. Rarely does anyone see the actual painting and moreover people do not talk about the actual paintings, they talk about the people portrayed. It's more like I am here simply making introductions. I just happen to use watercolor to do it.

What I am really going to use this blog post  for is to highlight my daily Facebook postings. Each day in May I am highlighting a NF Hero and sharing his or her story. The first day of May, I simply shared my page, The Many Faces of NF.

So, beginning on May 2, 2013 here are the postings:

May 2, 2013: Tony Mixon

Meet Tony Mixon who has NF2 and ran from Jacksonville Beach, FL to Miami Beach FL in 2010 to raise money for NF research. His first symptoms/problems began in 1988. Tony suffered from extreme headaches and dizziness. Upon visiting many doctors and undergoing numerous tests it was determined that heI had a very large brain tumor. After 2 surgeries the majority... of the tumor was removed but not without collateral damage. Tony was left with facial paralysis and deaf on the right side. However, with support of his family and his wonderful wife his life got back to somewhat normal. He was unaware that what he had was considered neurofibromatosis type 2 or NF2. Tony later would undergo more brain tumor surgeries as well and spinal cord tumor surgeries, the latest being in August of 2009. NF2 is a genetic disorder, which affects 1 in 25,000 births.

May 3, 2013: Ayden Wagler

Meet Angie Hovis Wagler's daughter Ayden. Ayden was diagnosed at 8 months of NF and subsequently Pseudoarthosis of the tibia. She had to have her leg amputated because of it. The NF was spontaneous and the family had never heard of it until she was diagnosed. The Waglers raised $5200 in one year for NF research but the following year had trouble raising money mostly because Angie had to concentrate her time on taking Ayden to therapy twice a week. Ayden's mom is quoted as saying "She is the happiest, most energetic, determined, stubborn, smart, funny girl I know.. And she has taught me so much about life and how to live it. To never give up ♥ I'm glad I was picked to be her mom and I wouldn't change a thing about her!! NF is a genetic disorder which affects 1 in 3000 births.

May 4, 2013: Darren Kirk

Meet Darren Kirk from the United Kingdom. Darren and his two boys both have NF. Darren routinely does NF awareness skydiving events to raise money for the UK's NF Charity, the Neuro Foundation. Last year Darren was able to get 21 people to jump out of a plane with him all in the name of NF awareness. In the process, he and his friends raised just over £6000! NF is a genetic disorder which affects 1 in 3000 births.


May 5, 2013: David Gladyness

Meet Chef David Gladyness. Besides currently dealing with Neuroendocrine cancer because of the NF, David has been a camp counselor at Camp New Friends since 2004 (NF Camp for kids). He has a family history of NF, starting with his maternal grandmother, his mother, his brother and himself. David elected not to have any children since he didn't want to take a chance on passing it on. David organized a party which resulted in a donation of $13,000 for his local NF group which will be used for his NF family camp in Michigan. NF is a genetic disorder which affects 1 in 3000 births.

May 6 2013, Wyatt Enman

Meet Kallie Southwick Enman's son Wyatt. In Wyatt's own words: "Sometimes I feel terrible because the NF hurts. I have tumors that grow inside my body that make it hurt. I have to get a lot of MRI’s to make sure the tumors aren’t hurting my body too bad. Sometimes when I run I can’t keep up with my friends because my legs hurt so bad. I want someone to find a cure for so that I won’t have it anymore and so that I can play along time without getting tired. I don’t like to be sick all the time. If they had a cure for NF, I wouldn’t have to be sick all the time. I want people to know all about NF so that kids like me won’t get made fun of. It’s not fun to go to the doctors and hospitals and have all of the tests all the time. But I know I have to. I have NF, but NF doesn’t have me!" NF is a genetic disorder which affects 1 in 3000 births. 

May 7 2013, Tomas Garrido

Meet Hirina Garrido Alfaro's son, Tomas. In her country of Chile there is no association or group established for NF, but she is working to change that. She is trying to create an entity recognized by the state to help them financially and with health issues. Currently Chile will not invest too much into rare diseases or incurable genetic disorders. Loosely translated she explained that only those who have money can opt for a good health system. Hirina shared this: "I enjoy each day as if it were the last, his illness sometimes makes me so afraid of losing him, I was kissing his forehead and discovered a lump under against it, my financial situation at the moment is rather complicated and I cannot take him to the doctor. I can only ask God to take care to have money." NF is a genetic disorder which affects 1 in 3000 births.

May 8 2013, Sara Pavesi

Meet Theresa Pavesi's daughter Sara. Sara is a middle school student who dances ballet about 3 to 4 times each week. Sara recently won a handmade tutu contest, sponsored by tutus.com, with a blue and green piece she designed and made with her mom. Blue and green are the colors of NF support ribbons, and she’ll wear a version of the tutu when she dances at the NF Hope concert this October in Las Vegas. Sara has tumors in her chest, on her rib cage, under her arm and on her optic nerve. NF is a genetic disorder which affects 1 in 3000 births. 

May 9 2013, David Groudas

Meet David Groudas. Because of NF, David has a degenerative disk in the lumbar portion of his back which contributes to his spinal stenosis. David also has Chiari I Malformation with a syrinx to which he had to undergo surgery. The results of the first surgery didn't turn out very well, so David had to undergo the surgery again. Besides being a huge supporter of the Children's Tumor Foundation, David finds time to spread awareness by his huge NF sidewalk chalk drawings. The drawings usually spell out "Cure NF" and can take up the entire length of his driveway. NF is a genetic disorder which affects 1 in 3000 births. 

May 10 2013, Lucy Collier

Meet Mary Collier's daughter, Lucy. They live in a small town in western Australia. Lucy has an optic glioma (brain tumour wrapped around her optic nerve) that is inoperable and is slowly affecting her eyesight. She has a severe scoliosis that she wears a spinal brace 22 hours a day. She has epilepsy and before medication was having up to 20 seizures a day, now she is medicated she only has around 4. She has Autism and associated learning, behaviour and social problems, she also has ADHD and anxiety disorder. She is starting to grow a few plexiform tumors too. Six months after Lucy's diagnosis the family had blue bands made with NF type 1 on them. Lucy's older sister sold them at school for a donation to raise money and awareness. In fact, their small town raised $24,000 Australian dollars to fund a therapy pool for Lucy. The town has been a fantastic support. NF is a genetic disorder which affects 1 in 3000 births.

May 11 2013, Michael Forbes

Meet Michael Forbes. As a child Michael remember seemingly endless doctor visits exploring treatments for NF. NF slowed him down. He did not walk until he was two and didn't start talking until four. Operations on his hips corrected his walking at age 11, yet doctors advised that he stop playing soccer and riding his bicycle. The school district denied repeated requests from his parents to test him for learning disabilities. He rarely received an A or B. Basically, his childhood taught him that having Neurofibromatosis was not normal and he had to be fixed. Michael has a new project now. Implementing his love for travel, he travels Route 66 meeting others with NF and giving presentations. His personal interpretation of NF is that it can create change every single day. He never knows what will happen in regards to NF, similar to the the unexpected experiences while traveling Route 66. NF is a genetic disorder which affects 1 in 3000 births. 

May 12 2013, Kristi Hopkins

Happy Mother's Day! Let me introduce an amazing mom, Kristi Hopkins. Kristi is a 30 something mom of 6 kids and also has NF1. Kristi grew up in a family where Neurofibromatosis was curse word. The utter mention of it grew guilt and fear in her parents. Understandably so. She was officially diagnosed with NF when she was 33 yrs old. She grew up watching her Mom and older brother struggle with the symptoms, but never had any real issues until after her own diagnoses. As a child, she knew she was different, but no one knew it was because of NF. After symptoms began appearing, even Kristi denied that it was in fact NF.... hiding in her fear. It has taken her a long time, to finally accept the diagnoses, and break the cycle of fear and resentment. Instead of just living with NF, Kristi has chosen to THRIVE! Using the fear and turning it into doing something productive and positive! She has written the book "Thriving with Neurofibromatosis". NF is a genetic disorder which affects 1 in 3000 births. 

May 13 2013, Bailey Gribben

Meet Anita Power Gribben's son, Bailey. Bailey is 15 years old and has NF2. Bailey describes himself as "a regular kid in honor classes who loves science and volunteering to help developmentally disabled kids in their special basketball & baseball programs". In Bailey's own words: "NF just keeps interupting my life! In 2008 I had a meningioma tumor removed from my spinal cord and in 2009 I had 3 brain surgeries in one week to remove a brain tumor, blood clot and insert a vp shunt. For the past 18 months I have been in a clinical drug trial hoping to do my part in finding a treatment for NF and hopefully one day soon a cure for myself and all the people who suffer from NF. I have to go to the doctor in NYC once or twice a month for bloodwork, checkup and meds. Every 3 months I get a 2 hour MRI of my brain & spinal cord, to monitor the tumors that I still have - and an eccocardiogram and audiogram. I am now involved in the NF2 natural history study at NIH (national Institute of health), where I will go for testing every 6 months for 5 years, to help doctors and scientists to study and understand better and hopefully one day lead to treatments and a cure for NF! We NEED to find a cure and research medications to stop these tumors from growing REALLY SOON. I have BIG plans and dreams and I will NOT let NF2 stop me from doing what I want to do." NF2 is a genetic disorder which affects 1 in 25,000 births. 

May 14 2013, David Oosterloo

Meet David Oosterloo. David is from the Netherlands and has NF. His NF has manifested itself in several different ways including having about 7 or 8 neurofibromas (bumps). One is pretty big on his lower lip, where it hangs his lip down and has affected his teeth. This is actually the most tedious fibroma not because it hurts, but because he looks "different" because of it. The NF has also given him scoliosis. The doctors put it locks with two iron bars in his spine to help out, so they won't grow together. The downside is that his shoulders and lower back are taxed more. David's lung capacity is 70% and tires more quickly than other people. David has droopy eyelids and has difficulty reading something from long distance. For several years he has suffered from hyperventilation and panic attacks resulting from NF. David, who enjoys building websites, has started an online NF support group www.watisnf.nl to get everyone involved in NF awareness. He also has chat rooms and places for people to vent or exchange ideas about where to get the best treatments. NF is a genetic disorder which affects 1 in 3000 births. 

May 15 2013, Jacqueline Dunlap

Meet JoAnne Pastel's daughter, Jacqueline. Jacqueline has NF1 due to a spontaneous gene mutation. Jacqueline's mom, JoAnne, is consistently raising money and giving for the cause of NF. JoAnne is a Twin Cities children’s author who wrote “Bur Bur & Friends,” which features young characters with disabilities and medical conditions. But, to accomplish more for Jacqueline and other children with NF, JoAnne joined the Board of Directors for the Children’s Tumor Foundation, a group dedicated to “ending neurofibromatosis through research.” Jacqueline has multiple café au lait spots, a plexiform neurofibroma on the back of her head, a neurofibroma on the tip of her tongue, and a slight bowing of her left arm. However, Jacqueline is a typical preschooler with lots of energy and charm who is always trying to keep up with her 10-year-old brother. NF is a genetic disorder which affects 1 in 3000 births.

May 16 2013, Nick Stolzenburg

Meet Rebecca Schultz- Stolzenburg's son, Nick. Nick's NF was caused by a spontaneous gene mutation. Last year, Nick was diagnosed with cancer. On Dec.10, 2011 he had a tumor removed from his scalp. On the 19th, they called to tell his mom it was malignant peripheral nerve sheath tumor. Well, after more MRIs, a bone scan, a PET scan, more biopsies, & a mediport placed in him- he received his first round of inpatient chemo on Jan 23, 2012 (4 days, 3 nights). His next round of chemo was put on hold because he had to get surgery to remove the tumor in his neck, near the left carotid artery. His case was presented to a sarcoma board at St. Jude's hospital & Roswell & they all agree that the tumor needs to come out whether its benign or cancer. Rebecca and I wanted to paint Nick with all of his wonderful hair since he lost it all during chemo. As of one year ago, the doctors said that there were NO cancer cells and Nick's hair is finally starting to grow back. In his mom's words: "We continue to be extremely thankful for Nick's positive & incredible attitude through all of this. He is such an amazing young man with strength most of us could only wish for!!" NF is a genetic disorder which affects 1 in 3000 births.

May 17 2013, Siobhan Clarke

Meet Siobhan Clarke. She was diagnosed with NF1 at the age of 4. The doctors told her mom that she wouldn't live past 6 years old. Not only did she prove them wrong, she has endured quite a bit because of NF. In her words: "I am legally blind in my left eye, have NO depth preception, EXTREMELY limited to no periphreal vision, and SEVERE loss of field vision in my right eye. I also have a tumor on my optic nerve and my pituitary gland. My body is covered in hundreds of CAL spots and tumors; above and below the skin, but my brain, head, scalp and spine are the most effected-(my spine is covered in teeny tiny tumors). I've also had 28 surgeries. I spent 3/4 of my childhood at A.I. DuPont Hosptial for Children in Wilmington, DE seeing 16 specialists for my NF. Growing up was the most difficult challenge of them all. I had not one single friend. Everyone made fun of me and called me names like: tumor girl, tumor head, mountain range, lumpy lacky, one-eye, cyclops, polka-dot **** breath; I can go on. One time I was at the park by my house and about 10 kids surrounded me and threw rocks at me, spit on me until my Mom came up and freaked out and she got in trouble. I was thrown down a flight of steps, had lockers opened on my blind side and above me so when I moved I would hit my tumors or walk into it bc it was out of my sight range, tripped! I look back at all of these events; and I think, WHY?" NF is a genetic disorder which affects 1 in 3000 births.

May 18 2013, Anne Barron Shigley 

Meet Anne Barron Shigley. Anne was in first grade when the discovery of deafness in her right ear led to an MRI. This process revealed tumors on both auditory nerves and the spinal cord. She was diagnosed with neurofibromatosis type II (NF2). Eighteen months later, the tumor that deafened her right ear paralyzed the right side of her face. As a senior in high school, Anne completely lost her hearing. In her words: "I wake in the intensive care unit after the operation to remove the auditory neuroma; my head hurts; white gauzy bandage that looks like a large turban is wrapped really tight around my head. I hear sounds, but I soon realize those sounds are not real. That sound is silence; now I know what silence sounds like. Silence sounds like static, but sounds can be felt by vibrations; I have been told that silence is golden, calm, peaceful, sanctuary, holy. Wrong! Silence is dark, empty, mute, speechless, scary, sulk, and black like death." Anne has made it her life mission to find a cure. She is apart of the NF Endurance team and consistently participates in runs to raise money and awareness. In 2010, Anne personally fundraised a total of $10,122 towards helping to fund research and medical trials and treatments to help find a cure for NF. NF2 is a genetic disorder which affects 1 in 25,000 births.

May 19 2013, Kaitlyn Singh

Meet Michelle R. Singh's daughter Kaitlyn. Currently, Kaitlyn is on a weekly dose of interferon which is a low dose chemo to help shrink her plexiformas with the hopes of stopping the progression of her NF. NF isn't slowly Kaitlyn down too much as she is an honor roll student and loves karate. In fact, she just earned her gold belt recently! Last year, Kaitlyn's family participates in the CTF Race for a Cure program. The Racing4Research™ (R4R) program utilizes competitive, professional auto racing as a vehicle to increase awareness of neurofibromatosis and raise funds for research through corporate sponsorship, personal donations, and individual fundraising by NF Heroes: children and adults from around the country who live with neurofibromatosis. The Racing4Research program offers children and families living with the disorder a uniquely empowering weekend, and has raised more than $2 million dollars since its inception five years ago. NF is a genetic disorder which affects 1 in 3000 births.

May 20 2013, Grace Giannotti

Meet Dara Dandrea-Giannotti's daughter, Grace. Several years ago, Grace went to the ER because she was losing weight and within hours the family had an MRI that confirmed she had a PNET (medulloblastoma). She went through massive amounts of chemo as well as a stem cell rescue (they froze her stem cells then at the end of her 6 rounds of chemo wiped out all her bone marrow and gave her back her own cells to regenerate). She managed to make it through all that only to have it return in 2009. This time they did chemo but they wanted radiation as well, they were told as an NF patient she was at twice the risk for secondary cancer from radiation treatment. Learning about proton radiation and its lowered risks, Dara asked her docs who agreed that would be the better option for her but there were only 5 centers in the whole country, not all did children nor would take our insurance and they doubted we could get into one in time. Dara moved mountains and got it done. In Novemeber of 2010 Grace had a stroke, we were told that the full brain radiation she had to get done was now damaging the blood vessels in her brain and causing a condition they find in NF called moya moya, they knew there could be these effects but it seemed that they were finding it was accelerated in their NF patients. She has been having mini strokes and is on meds and oxygen treatment as needed and has so far had 2 cranial bypass surgeries to move arteries into her brain from her scalp to replace what is disappearing. So far she is doing as well as can be expected and we have a long road ahead but Grace smiles through it all and in an inspration to all around her and shows no signs of letting this keep her down. NF is a genetic disorder which affects 1 in 3000 births.

May 21 2013, Maurice Simpson 

Meet Maurice Simpson. As a child, the right side of his face was engulfed with fleshly lumps that obscured his eye. After seven painful operations the tumors continued to grow but Maurice didn’t let the stares or cruel comments get him down. “My parents taught me to be happy with who I am,” said Maurice. “At the age of fifteen I got tired of all the operations and decided to just get on with living.” Currently, Maurice is a happily married man and a father to five children. A few years ago, kind anonymous donor gifted him the $3,000 to pay for surgery to help alleviate some of the sagging of the tumors on his face. Maurice was thrilled with the surgery because it now meant his motorcycle helmet would fit again. NF is a genetic disorder which affects 1 in 3000 births.

May 22 2013, Jeff Hanson

Meet Julie Hanson's son, Jeff Hanson. Because of NF, Jeff is visually impaired from an optic nerve tumor (he nick-named "Clod"). The tumor started causing severe vision loss in 2005, and Jeff received radiation and chemotherapy in 2005-2006. Jeff never had a "pity party" about his medical condition. He kept a great attitude throughout his treatment, despite losing his hair and all the usual "chemo" side effects. Jeff said good-bye to his home school friends, and spent three years at the Kansas State School for the Blind. He took all of this in stride, and used humor, creativity, and a headlong immersion into his artwork to defeat "Clod." On his last day of radiation, Jeff showed up for treatment in a tuxedo! "Clod" was not going to win--or be taken seriously. Jeff started painting watercolor note cards when he was 12 years old to raise money for NF. It was a hobby since his visual impairment prevented him from doing sports and the usual kid stuff. Jeff's art was totally abstract, with bright bold colors. His vision did not permit him to create any concrete images. But his color combinations were explosive! His mom then bought him some acrylics and canvas and the entire Hanson family is proud to announce that as of last week Jeff's artwork has generated over ONE MILLION dollars for charity and he is only 19 years old. Jeff isn't just some kid down the street who lost his vision because of an NF tumor, he has redefined himself. Jeff is an artist and a philanthropist and an inspiration. NF is a genetic disorder which affects 1 in 3000 births. 

May 23 2013, Nic Cohoon

Meet Sheila Bouford-Cohoon's son, Nic. He is 4 yrs old, he is beautiful and he has NF. Nic's NF symptoms are a bilateral optic "thickening" gliomas, 9 degree curvature of his spine and the biggest issue is his low muscle tone. He gets PT and OT for his low tone along with doing karate once a week. He has come so far from where he was and they couldn't be prouder of the person he is becoming. He has his dad's love of cars and his mom's love for everyone. Sheila relates that "Life isn't perfect for anyone and no one ever said that life was fair. We live in today. Tomorrow is not a guarantee for anyone and we try to enjoy each other as much as we can". Additionally, Nic has inherited his Uncle Doug's way of retaining everything. His uncle was known for his motto "LIVE LIFE"! And Nic and his family are doing just that while consistently raising NF awareness along the way. NF is a genetic disorder which affects 1 in 3000 births.  

May 24 2013, Ben Monterotti 

Meet Ben Monterotti. When Ben was 3 yrs old, he started getting sick for no apparent reason. After a referral to a neurologist, an MRI showed that a large brain tumor was the cause. The tumor was removed and Ben simply spent several years having appointments and MRIs. Later in life, two tumors were located on the acoustic nerves and this was the first time he and his parents heard the word “Neurofibromatosis”. An eventual diagnosis of NF2 was made. MRIs became more frequent and a 2003 scan showed that the AN located on the left side was growing too fast and action needed to be taken. Rather than having surgery to remove the tumor Ben decided to go to the University of Pittsburgh Medical Center and have gamma knife performed. A few hours after the procedure the quality of hearing in his left ear started to decline and within a week he could no longer hear out of his left ear. Maintaining a job became difficult because of the hearing loss and in 2007 it was decided that it was time to remove the AN on the right side as well - this being the surgery that would leave Ben completely deaf. Ben was not quite 24 years old yet at the time of the operation. While the doctors were able to remove the entire tumor, they also completely severed Ben's facial nerve, leaving the right side of his face paralyzed. In 2009 Ben's family hosted the first “Ben”efit for NF2, a social event that featured live and silent auctions, entertainment, and an appearance by two-time Heisman Trophy winner Archie Griffin. This event was very successful and would be held once again the following year, this time featuring appearances by Jack Hanna and the president of the CTF, John Risner. The third event took on a different form – a raffle for an Ohio State football ticket package. Since the inaugural event in 2009 the “Ben”efit for NF2 has raised over $94,000 for the Children’s Tumor Foundation. NF2 is a genetic disorder affecting 1 in 25,000 births. 

May 25 2013, Izzy Mick

Meet Marianne Hughes Mick's daughter, Izzy. As an infant, a neurologist erroneously told the family that Izzy had a rare disease and would not live to see her third birthday. The neurologist was wrong, what Izzy had instead was NF1. On March 18th, 2009, the day before her 3rd birthday, Izzy had surgery to place a port in her chest. Chemo was started that evening. Hours after she received her first round of chemo drugs, her little body began attacking her immune system. Izzy handled all of the subsequent drugs very well and completed the chemo. Unfortunately Izzy has 2 new tumors to watch; one on her brainstem and a plexiform tumor on her face. In Marianne's words "Some days it feels like we will never have a normal life. I want to complain about ear infections...We have tried to keep life normal, but normal is hard when you spend hours in a car to get to appointments and hours getting chemo each week. We also struggle to make sure that her older brother, James, is not getting lost in everything that is going on. Our lives have been turned upside down. At times, I feel like I am drowning." But the Micks have not let NF get the best of them. They have organized the successful yearly fundraiser "Izzy's Tumor Trample" with all proceeds going to the Children's Tumor Foundation. Additionally, Marianne helped create the NF forum "NF Moms Rock!" which allows moms (and dads) to swap information, ask questions, share treatment ideas and trial information, discuss medical information and pretty much serve as an overall support group for any parent who is trying to navigate how to raise a child with NF. NF is a genetic disorder which affects 1 in 3000 births.

May 26 2013, Presli Collins 

Meet Andy Collins's daughter, Presli. Presli was diagnosed with NF1 in 2007. Presli had brain surgery in 2008 to fix a chiari malformation and during that surgery the doctors removed a tumor from her back as well. She has seen all kinds of doctors at CHOC in Orange County, CA. and is now starting to see doctors in Colorado and The Children's Hospital in Denver. Presli's scoliosis had progressed too fast and she had to have anterior and posterior spinal fusion surgery. Last year, Presli helped bring awareness for NF when her family reached out to the Tim Tebow Foundation. Presli got her wish and met her idol, Tim Tebow. Tim took her out as his date for the Cartoon Network awards and spent an entire day with her. Tim allowed Presli to be just simply be a kid and have an amazing time and forget about her NF for a bit. However, as most of you know, with NF you take the good...and you take the bad. As of last Monday, the plexiform Presli had removed is back and it is bigger. The family suspected that would probably happen, but as a parent you always have that little hope that it won't. The Neurology and Oncology departments want brain and full torso MRIs so they can see where everything else is at in the next few months. Presli's family simply asks you to pray for her and have set up a page on Facebook called "Pray for Presli". NF is a genetic disorder which affects 1 in 3000 births.

May 27 2013, Mia Rashkind 

Meet Danny Rashkind's daughter Mia. Mia was diagnosed around 8 months old with NF1. At the same time the neurologist also informed Danny that he also had NF, he was 31 years old at the time. It was discovered that Mia had two brain tumors, optic gliomas, one on each optic nerve. The tumors were large enough that they were going into the chiasm. Since Mia had two and due to the fact that they were not present on her previous MRI , her neurologist wanted to treat the tumors aggressively. Mia had surgery on September 15th, 2008 to have a port implanted in her chest. Because of an allergic reaction, Mia had to start over from day one with a new chemo treatment. It was at her next MRI that the family found out that the chemo was not working, and that her tumors had, instead, grown. She was then placed on another mix of meds, again chemo meds, and was on this for one year. At that point, all MRI's had shown stability (no growth) and it was decided to end chemo. Mia will get MRI's every three months for 5 years from the date that Chemo ended. In Danny's words "Mia has had to deal with two brain tumors, two years of constant chemo, numerous MRI's, blood work, tests, and visits to numerous doctors. Our lives have been turned upside down by this disorder, not all in a bad way though. The NF community that we call our NF Family, is a wonderful group of people who understand the fear that we have for Mia and the desperation to find a cure. I don’t want my child to suffer, or her children or anyone for that matter." Danny participates in the Run for a Cure in the Virginia Beach Rock n Roll Half Marathon to support his amazing and wonderful daughter, Mia. NF is a genetic disorder which affects 1 in 3000 births. 

May 28 2013, Kcat Yarza

Meet Kcat Yarza. Kcat lives in the Philippines and is a contributing writer to the Manila Bulletin. Kcat has NF2 which had left her deaf and one side of her body paralyzed. She cannot walk because of the NF. In fact, prior to the paralysis she was left handed and that was the side of the body that became paralyzed. Kcat practiced using her right hand and went back to creating artworks through her computer, and did self study through the internet until she developed her skills in graphic design again. She currently designs t-shirts and is able to use the money raised to help offset her own medical bills. She's had surgery to save her eye from a bulging tumor and had a cochlear implant to restore some hearing. In Kcat's words "Neurofibromatosis is a continuing battle. We may never know when and if the tumors will strike again. There are still a lot to "get better” from. Besides, why do I have to worry? Worrying would just add to our burden. What I need to do now is to be strong and find ways to raise funds for my medical expenses. God is with me. His will be done". Blessings came pouring. In 2010, Kcat was chosen as one of the 7 finalist in the Cebuana Lhuillier’s Search for Happiest Pinoy. In the same year, she became the grand winner of Pagbabago blog contest sponsored by Nuffnang and Goldilocks. She was invited to give a talk and inspire more people in different events and did a couple of TV, broadsheet and radio interviews. To share all these blessings from God, Kcat launched her “MAY Birthday Project” in 2007, where she asked her friends for hospital necessities and toys and birthday gifts to distribute among the Children’s & Neurosurgery Wards at Philippine General Hospital. NF2 is a genetic disorder which affects 1 in 25,000 births.

May 29 2013, Dakota Anderson

Meet April Anderson's daughter, Dakota. Dakota was born June 26, 2005. She was just a couple of weeks old when her mom first noticed what I thought were 2 birth marks on her leg. At her 2 month check up she pointed them out to her pediatrician. The pediatrician seemed a little concerned and measured them and noted them in her file. She called them cafe au lait spots. She told me that we would watch for any more and then told me a big name, that I could later not remember, and said that this could be what the elephant man had. April mused that she laughed to herself and thought how could 2 flat brown spots turn into what the elephant man had? It turned out that Dakota was diagnosed with NF1 due to a spontaneous gene mutation. (Elephant man did not have NF, he had Proteus syndrome.) When Dakota was about 18 months old she started having balance problems. A couple of times a month she would have trouble walking and holding herself up. One day she could not stand up in her crib. She kept falling over and over as she was trying to get up. April called the doctor and she said take her to the Emergency Room. They did a CT scan and found a mass in her brain. Later to be diagnosed, with an MRI, as a hypothalamic chiasmatic glioma (brain tumor) involving both optic nerves and tracts. The family was devastated. After getting MRI's every 3-6 months for the past 4 years, it has been decided to go ahead and treat Dakota with chemotherapy to slow down the growth of her optic glioma and try to save her vision. Dakota lost all the beautiful hair that you see in the portrait, but her chemo is now over and her hair is coming back in. The Anderson family is very involved in raising awareness and funds for the Children's Tumor Foundation and specifically for the California Chapter of NF. NF is a genetic disorder which affects 1 in 3000 births.

May 30 2013, Jesse Sorman

Meet Connie Brisson Sorman's son, Jesse. When Jesse was 3 months old, Connie took him to the pediatrician for his "well-baby" visit, as all mothers do with their infants. During this routine visit, the doctor noticed some brownish colored patches on his skin. She called them cafe-au-lait marks (CALs) and told her that a neurologist should evaluate him for "Neurofibromatosis". It was the first time Connie had ever heard that term, but certainly not the last. On her way home she called Peter, her husband, a Neuropsychologist, to give him the usual update of Jesse's growth and development. When Connie spoke of the neurology referral and the reason for it, she was met with dead silence on the other end of the line. Once Peter did speak again, it was to try to reassure Connie that there was no need to worry. She couldn't help but notice the concern in his voice. Fourteen years later, Jesse has some learning delays and struggles with some minor obsessive compulsive behaviors. He has a plexiform tumor on his right ankle and a limpoma over his sacrum. He has uneven bone growth in his legs, which he had growth plate surgery to correct in July 2009, March 2011 and March 2012. The family has discovered that he also has a thickening of the left optic nerve and optic chiasm and several small tumors along his spine. Jesse has an IEP which addresses his needs for support on many different levels and he enjoys school for the most part. Of course he'd rather be home playing video games, lounging in bed with the remote in one hand or hanging with his friends, but he is an enthusiastic learner, a hard worker and has made huge strides in his cognitive development. Jesse loves animals and has a keen interest in the sciences. Jesse hopes to become a Veterinary Technician or a Radiology Technician after attending college in his future. Connie is very active in the NY Western Chapter of CTF and she, Peter and Jesse are always constantly raising awareness about NF. NF is a genetic disorder which affects 1 in 3000 births. 

May 31 2013, Reggie Bibbs

Today is the last day of National NF Awareness month and the last day for me to share a story. I realized I have about 50+ more stories/portraits I could share so narrowing it down to just one final one isn't easy. I decided to end this month with the man responsible for the entire project. Meet Reggie W. Bibbs. Reggie is the director of the "Just Ask! Foundation" a non-profit organization dedicated to raising NF awareness by simply wanting people to start dialogues about NF and become informed about the disorder. Reggie is blessed to have a wonderful and supportive family that has always been there to protect him and help him out. Growing up he had his challenges of surgeries and hurtful episodes. He remembers one incident which he recalled, "Most of my teachers at Pershing were nice to me, but one incident haunts me still. I was waiting for the bus when I was 15. A teacher walked towards me yelling, where did you get that thing? Take that thing off! He was accusing me of having a mask on. It was no mask, it was just me. When he realized what he had done, he simply turned away. never mind, he mumbled. I did not know what to say or think when he first said that I had a mask. I realized then that I was angry. I had been going to the school for years. How could he be so unobservant? Even if he thought I had a mask and suddenly realized that I did not, his attitude was still offensive. By turning away from me with no apology, he did not acknowledge my humanity. To him, my humanness was hidden, my face was like a mask to him. If he had looked into my eyes, he would have seen a child who was hurt; he would have felt repentant. But he did not look at me long enough to see anything, it wasn’t worth the effort." Today, Reggie is one of the leading spokesmen about NF awareness and has positively changed the lives of countless people within the NF community. I hope to someday meet Reggie and simply say "thank you". NF is a genetic disorder which affects 1 in 3000 births.