President’s Blog

Meet Reggie

  • Courageous & Joyous Personality
  • Loves to bake and spend time with family and friends
  • Wants people to know they can “Just Ask” when they

see someone with a difference

  • Condition: Neurofibromatosis

When your appearance is as different as Reggie’s, it’s easy to withdraw from society and not want to be out in public. Reggie has a severe case of neurofibromatosis (NF) which greatly affected his face and left leg. For the first 40-years of his life, understandably Reggie stayed safe within his home and neighborhood avoiding people and their stares and comments.

On the rare days Reggie would go out, he would have to spend hours a day sewing himself into pants due to a 48” tumor on his lower leg.  The Courageous Faces Foundation reached out to master tailor Alan Rouleau and his Association, who made Reggie an entire new wardrobe. Then, the Foundation connected with Village Shoe Shop for custom shoes. Reggie is now the “Million Dollar Man” and he can get up and get dressed each day like anyone else.

Reggie is now committed to no longer hiding from people who have no idea what kind of condition he has and instead helps them learn more about his differences.  By spreading awareness through Just Ask, Reggie now shows that he is a person just like anyone else.  He tells people to “Just Ask” about his condition – and ask they have!  The more Reggie puts himself out there, the more positive responses he has received from others. Now, rather than sitting in his house wondering what life was like, he has started living it.  Reggie can now be seen at major Houston events, and in multiple states.

Recently, Reggie reconnected with former SNL actor and comedian, Kevin Nealon (whom Reggie had met two years earlier), who provided a special table for him, his family, and two Courageous Faces Foundation staff members at Nealon’s show in Houston at the Improv.

(show pix and video)

There’s nowhere Reggie won’t go. And everywhere he goes; he makes new friends and spreads the word about NF and other rare & severe medical conditions. He says he’s thankful for the Courageous Faces Foundation because “…nobody’s consistently accepted and cared for me like the people at the Foundation.”

Why I am thankful for the Courageous Faces Foundation:

I’m thankful for the Courageous Faces Foundation because of the quality of life and day to day comfort I now have because of them.

  • They step in when discrimination happens such as when an Uber driver pulled up in my driveway and turned around after seeing me. They took active measures to end that kind of discrimination and arranged for me to have consistent personal transportation. I can now get to my doctor appointments so I can get the care that I need.
  • They provided me with custom built shoes and an entire custom wardrobe.
  • The Foundation installed heating and cooling in my house which has a huge impact on my health.
  • I’m very thankful for the Foundation for being available when there is a need, because someone is always there.
  • It seems like I always have something exciting to look forward too. It’s been exciting getting to know all the other faces. Life is brighter since Courageous Faces Foundation started and continues to show me love.

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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