President’s Blog

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Faces of the Foundation:
2015

Condition:
Neurofibromatosis

Resources:
Mayo Clinic

U.S. National Library of Medicine

WebMD

National Institute of Neurological Disorders and Strokes

Just Ask

Additional Info:
Greg Taylor’s Facebook Page

 

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Meet Reggie

March 17, 2015, I came across a blog written by Lou Congelio titled “It Takes Reggie 25 minutes a day”… on a website I had stumbled across called Just Ask!Foundation. The article spoke to the very core of what our foundation is about… People!

It is about a person, Reggie Bibbs, who has an extreme condition of NeuroFibromatosis (NF). Over the years I have met a few people that have NF, so I was familiar with it, just not like Reggie’s. The blog asked if anyone had any solutions or ideas that might be helpful for Reggie regarding pants. I knew then and there, that I needed to reach out to Reggie, to learn more about his condition and what he has tried in the way of pants.

A week later Reggie and I spoke by phone and I learned that Reggie is going to MD Anderson, one of the Top Rated NF Centers in the United States. He has had 10 surgeries over the years only to have the tumors come back faster and more aggressive. He is hopeful that at some point new research will come up with some treatments to stop the tumors from coming back. However, at the current age of 51, Reggie has decided to not have anymore surgery due to the pain, recovery time of almost a year and the fact that it isn’t helping.

We talked about the morning ritual that he goes through to get his pant leg sewed on so he can be ready for the day. Because his left leg swells and will never be the same size as his right leg, pants are a huge challenge. I told Reggie about a good friend of mine, Greg Taylor who lives in Washington DC and is a fashion/clothing designer. I asked if it would be alright for me to contact Greg, tell him about the pants issue and ask if he would make a pair of custom pants. Reggie was excited about the idea, so my next email was to Greg, which included the story about Reggie so Greg could understand that making this pair of pants would be unique and different than anything he has ever done in his fashion career.

Greg immediately called me after reading my email and gave me a resounding YES! He would be happy to make Reggie a pair of custom pants, but he would need to measure him in person. We agreed that we would meet in Houston and that the foundation would cover the cost of his trip.

On April 6th Greg and I arrived in Texas and met up with my brother Bill, who was already in Houston for business. We drove to Reggie’s home, and met him, his mom, their dog Ginger, one of his sister’s and two of her daughters. We spent time talking with the family while Greg measured Reggie for his new custom pants. That evening we all went to dinner and learned more about Reggie and his five siblings. His mom is the carrier of the NF Gene and has a mild form of NF as do two of her daughters and one of Reggie’s brothers. Reggie shared that his brother with NF passed away at age 46 after having surgery to remove a tumor from his leg, which then came back aggressive and cancerous.

On June 16, Greg and I will fly back to Houston for the pants fitting and to make any adjustments needed at that time. Everyone is so excited about what custom pants will mean for Reggie. Such a simple thing will save him 25 minutes each day!

To learn more about Reggie and NF please read his story below.

Reggie’s Story

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Reggie has a rather severe case of neurofibromatosis which has caused his disfigurement. For the first 40 years of his life Reggie stayed safe within his home and neighborhood avoiding people and their stares or comments.

Then one day, he had an idea. Instead of hiding from these people who had no idea what kind of disorder he had, he decided that he wanted to help these people learn more about his disorder. He figured that the more people knew about his disorder, the more people would understand what he is going through and want to help.

By spreading awareness, Reggie could show that he is a person and let people know that, at heart, was no different than anyone else.

He wanted people to “Just Ask” about his condition – and ask they did!

The more Reggie put himself out there, the more positive responses he received from others. Now, rather than sitting in his house wondering what life was like, he started living it.

Reggie can now be seen at major Houston events all over town. The International Festival. The Art Car Parade. The Houston Roller Derby. There’s nowhere Reggie won’t go. And everywhere he goes; he makes new friends and spreads the word about NF.

Because of the success of his “Just Ask” movement, others with NF are following Reggie’s example. So, with help from a handful of friends, Reggie turned his simple idea and grassroots movement into the Just Ask! Foundation – an organization dedicated to spreading awareness about NF through the people most affected by it.

It is truly amazing what a simple t-shirt and a handful of business cards can do.

Reggie’s Videos

 

Reggie’s Photos

Reggie’s Blog

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