Thursday, February 27, 2014

Thank You, Thank You, Thank You....10,502 times Thank You!

"Many Faces of NF" Team - Top Fundraising Team for Omaha - $10,502 for CTF
This past February 15, 2014 was the inaugural run in Omaha for the Cupid Undie's race with all donations going to the Children's Tumor Foundation. I want to publicly thank my teammates for making this happen: Lisa Rabbe, Mike Rabbe, Judy Blecha, Emilie Mindrup, Cat Koehler, Jaim Hackbart, Cortney Christensen, Mindy Rabbe-Miller, Steven Sherman, Sue Lyons, Teresa Armagon, Kourtney Greenfield,  and Tricia Heger. While running around in our skivvies in the middle of February is absurd (and terribly embarrassing for me!) the donations that came in really mean a lot to me and all the families affected by NF. All the money donated goes directly to the Children's Tumor Foundation (CTF). CTF is the leading charity in the fight to find a cure for Neurofibromatosis (NF). My son, Henry, was diagnosed with NF1 when he was only four months old. I had never heard of it.

Neurofibromatosis encompasses a set of distinct genetic disorders that cause tumors to grow along various types of nerves and, in addition, can affect the development of non-nervous tissues such as bones and skin. Neurofibromatosis causes tumors to grow anywhere on or in the body. NF1 is the most common neurological disorder caused by a single gene; occuring in one in every 3,000 children born. The Neurofibromatoses are genetically-determined disorders which affect more than 2 million people worldwide; this makes NF more prevalent than cystic fibrosis, Duchenne muscular dystrophy, and Huntington's Disease combined. NF is worldwide in distribution, affects both sexes equally and has no particular racial, geographic or ethnic distribution. Therefore, NF can appear in any family and it happened to appear in mine.
My Top Fundraiser award ($4550 in donations!) was a medal in the shape of underpants.
Trust me, if you have kids, winning a big medal of a pair of underpants makes you "Mom of the Year".

I want to share a little bit more about what my role in NF awareness is and how I got involved in this race, and therefore how my friends and family got involved in asking and running for donations.

In 2010, I decided to paint a portrait of Reggie Bibbs, mostly as a "thank you" to him for all he has done to raise awareness. With his face completely disfigured with tumors, he started the "Just Ask!" Foundation and wears a "Just Ask!" t-shirt because he knows people are wondering what happened to his face. After the initial portrait, I was surprised by the incoming requests via Facebook to paint more portraits of NF heroes. All people with NF who had help raised awareness and/or donated to NF charities. Soon parents began requesting portraits of their kids who had NF. I am happy to say as of today, I have painted 107 watercolor portraits and everyone depicted has fundraised to help find a cure. And, the people depicted are from all over the world: The United States, The United Kingdom, Australia, Ireland, the Netherlands, Colombia, Chile and the Philippines to name a few.

My amazing mother took the 2nd place
Fundraising Award with bringing in $2305 for CTF!
CTF Nebraska Chairman, Andy Schafer was stoked!
He and his wife, Amy, also have a son with NF
and work tirelessly to help raise awareness.
To view the online project, please click here:

In 2012, I took the project farther and wanted to start showing people with NF as something other than a statistic. Painting is a way that allows viewers to look at people with NF without the awkwardness of face to face interaction. It gives them permission to gaze. And with gazing, comes learning and education. Taking my cues from Vermeer and Hopper, I decided upon was placing them within familiar contextual frameworks so the viewers would just happen upon paintings of people doing their everyday activities only to realize that each person painted has NF and has a complicated life story. Each painting also has a placard with the person's story next to it. In some sense, the NF is just apart of the individual, but it is not the defining characteristic.

If I want my son (and other kids with NF) to grow up happy and secure, it was my thought to make sure he realized he was not alone with this disorder. And by redefining what "normal" is by having him participate in getting to know each person with NF that I paint, I believe I am on the right track. The more awareness I can create for NF, ultimately means the more people will be likely to donate. The more money that is donated to researchers increases the likelihood of finding a cure.

In October 2013, CTF and the Cupid Undie's Omaha Race directors, Suzanne Gibbs and Hannah Patrick approached me to form a team as this was the first time the run was here in Omaha. I cannot lie. I about died. I even told them that I wasn't really the "right" person for this and I wondered if I could just offer to volunteer to take bags, pass out water or do something as a way to get out of actually doing the race. Anyone who knows me, knows that I do not exercise...I hate the cold, running around in my undies sounded horrible and even more than that, I hate fundraising. To ask people to give up their hard-earned money to help my son and other families? I just wasn't sure.

I was actually relieved that my boys were wearing stocking caps
and had their coats zipped up even though
I am standing around in a sports bra.
How ridiculous is that?
Well, I decided to step out of my comfort zone (aka the safety of a studio) and just do it. And so did my mother, mother-in-law, sister and her husband, and several of my friends. I was stunned that 1. friends and family joined my team and 2. that we were really doing this. My husband was dubious for a long time as to whether or not I would really run around in my undies.

Well...we did it and my friends and family had a lot of fun. Henry was beaming that the entire city of Omaha would run around in their underpants for him and for other kids with NF. After the race was over, donations still kept coming in, much to my surprise. The city of Omaha raised over $35,000 for CTF and my team, Many Faces of NF, raised $10,502. Now that is really amazing and it is all thanks to all the amazing donors.