Monday, May 13, 2013

KCAT CAN: Addressing a global issue

Addressing a global issue
By Maria Kathrina Lopez Yarza
Published: May 13, 2013

It’S my birthday today! The month of May has always been special to me not only because this is my birth month, but because of a couple of other reasons that calls for a celebration. Most of my family members were born this month – my uncle on the 6th, my dad on the 10th, my cousin on the 16th, my brother on the 17th, my grandmother on the 20thh and my mother on the 27th.

This May 18 will be our 7th annual gift-giving at the Philippine General Hospital and I’m certain that it will be as successful as the previous years. More importantly, it’s also Neurofibromatosis (NF) Awareness Month, and I’ll get to celebrate it with my NF friends who’ll be joining me in my upcoming birthday project to spread NF awareness on May 18. Someday, I wish that we’ll have our own NF event in the country.

When Rachel Mindrup posted a message on our Neurofibromatosis Philippines page regarding her advocacy, I was really amazed with what she did. It’s not every day that you get to receive a message written in Filipino by an American. She is the artist behind The Many Faces of NF, where she raises NF awareness through her art.

Rachel had never heard of Neurofibromatosis until nine years ago, when her son Henry, then only four months old, was diagnosed with it. She researched about her son’s condition but there wasn’t much information online or any book  about it in the library. She wanted to just forget about her son’s condition, but every time she tries, Henry would have some new complication. She realized that NF isn’t going away and trying to pretend it doesn’t exist isn’t going to help, so the best thing to do is just live with it.

In 2008, she joined Facebook and met a couple of parents whose children had NF. She was able to easily identify with them. They told her about the NF Endurance team and some of the walks that she could participate in.

“The truth is, I hate exercising. Even more than this, I hate fundraising. I do not like asking people for money,” shares Rachel.

That posed a problem because she needed people to raise funds for NF research in order to help her son. Then she learned about Reggie Bibbs, the founder of Just Ask! Foundation. The non-profit organization is dedicated to spreading awareness about NF and helping people affected by it lead a more productive and satisfying life. Rachel painted a portrait of Reggie as a token of appreciation for what he is doing.

“I wasn’t sure if he would like it or not. I just wanted to do something to keep him going out spreading NF awareness. It’s a token of appreciation from a mother of a child with NF,” Rachel says.

Reggie loved the portrait, word spread and before she knew it, she had already painted over 80 portraits. All she asks in return is for people to donate money for NF research and/or spend time raising awareness.

Because of this, Rachel learned that NF manifests itself differently from person to person. Some may have facial disfigurements while others have tumors growing internally. Still others may have no tumors, and suffer from severe learning disorders. There really isn’t just one “look” and that’s how she came up with the name “Many Faces of NF” on Facebook.

“I thought, and I think it is working, that if I started painting all of these portraits, people would notice how different everyone looks from each other and yet this is what binds us all,” relates Rachel.

Aside from doing watercolor portraits, she also delved into oil portraits of persons with NF while doing what they enjoy like drinking coffee, playing the guitar, building Legos, and playing a keyboard. She wanted the person’s personality to take center stage while the NF takes a back seat. She wants people to realize that just because someone has NF, it doesn’t mean that they are limited or that it is their defining feature.

“People often ask me if this is just something common here in Nebraska or the Midwest. I mean...really?,” Rachel says, hoping that people will see it as a global problem.

As for writing in Filipino, Rachel says that she intentionally tries her best to message people in their own languages so she would be able to effectively convey her advocacy.

She believes that if she paints as many different people, ages and ethnicities of persons with this disorder, it will help more people realize that this isn’t just something going on in one country, and that everyone around the world needs to work together to find the cure and treatment.

“I want to make NF well known all over the world. I want to take it to every country that’s willing to listen,” adds Reggie Bibbs.

Rachel hopes to turn these portraits into a full-color book so that everyone may learn about NF and how it affects the people that have it. To achieve this, she needs as many “Likes” on

Like the people with NF, Baby Belle Espeleta who was diagnosed with Biliary Atresia needs help. She has been inflicted with this rare disease in the liver, needs to have an operation before she turns one this coming May 25. The operation costs four million pesos. If you want to extend your help, call Abbey Espeleta at 0922-4517438.

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