neurofibromatosis cafe

A place to talk about NF, have fun and share.

Philanthropy World Profiles Texas NF Foundation by Bob Hopkins

Bob HopkinsThe Texas Neurofibromatosis Foundation was founded in 1978 by an Austin mother whose son had NF, a genetic disorder that causes disfiguring tumors. While the disease is not uncommon, most people do not know of the disease, partially because people who have it tend to shield themselves to avoid public ridicule.

During the ten years after it was founded, the families involved with the foundation raised money any way they could – from walkathons, skateathons, garageKathy Price and NF board members sales, and all the other means “families” use to help their own.Relief for the group came when the Dallas and Houston NFL alumni adopted their cause. Annual golf tournaments were established to support a small office in Austin and raise limited funds to support budding research projects.

Further help came from the Mark Wagner family in Dallas, who came aboard in the early eighties when their daughter, Elizabeth, was diagnosed with the disease. The involvement of Mark and Suzanne Wagner, a high-profile couple in the booming Texas real estate business, gave the organization much-needed support and recognition.

In 1987, when the Texas economy took a downturn, the NF Foundation, like many budding organizations, was forced to raise money by using professional fund raising techniques. Their challenge was to broaden their base, create a marketing plan, and develop a strategic program of outreach to people who had never heard of the disease. They established an annual campaign and began writing grants.

The board of directors created a board of trustees – a group of highly motivated, energetic, socially connected young volunteers eager to get involved in a worthy charity. Over the next four years, the NF Foundation parent group rallied friends, next-door neighbors, bankers, ministers, relatives, and work associates behind their cause with the mission of finding a cure for the disease.

Hundreds of people got involved in NF events, and the Foundation became a social gathering place for young professionals. While a cure has not yet been found, the money raised by this group for research aided in the search to find the cause and helped to identify the gene and chromosome responsible for this insidious disease.

Because of this active board of trustees, special events were created which not only raised money, but awareness, about NF. A video was produced with support from the Meadows Foundation, the RGK Foundation, and STANANDLOU of Houston.

Marketing materials were developed. Booths at business fairs were manned by the trustees. Crawfish Festivals, events that are largely responsible for the success of the organization today, were created by the trustees.

Young professionals and their friends gathered in the name of neurofibromatosis and had fun doing it. A cause with a mission and a direction, plus the element of “fun,” was a recipe for success for the Texas NF Foundation.

Please Note — Shown above is the beginning of this article. Please see the July/August 2000 Philanthropy World Magazine magazine (Volume 5, Issue 3) for the rest of the article.


May 10, 2007 - Posted by | neurofibromatosis, Texas NF Foundation


  1. Boy do I remember the good old days! Bob Hopkins put together one of the best volunteer groups I had ever encountered. Everybody wanted to work and contribute. The board was a nice mix of families with NF and businesspeople who knew how to run an organization. The mix between the two was perfect: the parents made sure the needs of the patients were met while the businesspeople made sure we had the capital to fund those needs plus contributing to vital research.

    Having Vic Riccardi as our medical director wasn’t too shabby either!

    Comment by adgiant | May 11, 2007 | Reply

  2. Emily, Great contribution to the blog! I have posted it as a new entry. It needs whatever attention we can give it. Please send directly to Reggie or I whenever you have something important like this. Thank you so much!!!

    Comment by adgiant | May 11, 2007 | Reply

  3. I am just trying to do my part to spread awareness of this situation. I am just so mad that they have cut funding like this. Who knows if I can do anything about it, but I am definitely going to try!
    I used Reggie’s entry about it as a model for the petition itself.

    Comment by Emily | May 11, 2007 | Reply

  4. That was great. I started with the foundation in 1987, after Bob H. started it in Dallas. Stayed with Kathy P., Deann B., and now with Cindy. In 1992, the Texas NF Foundation premire the NF Family Camp, which other NF originzations follow having their camps. This year, we will have our 16th Annual NF Family Camp. Being to 13 of the 16 camps, it just get better each year.

    Comment by JPTEX | May 11, 2007 | Reply

  5. I’am so happy with what is going on with this site. We will be heard. We will make a difference. Full steam ahead.

    Comment by Reggie Bibbs | May 11, 2007 | Reply

  6. I have a nephew who is probably the oldest one with stugdwebber and his dad is a single dad. His mother died when Justin was 13 now he’s 22. His mother also spent like 9 months waiting for a heart tansplant, channel 7 in austin has a film on her where she was interviewed erging people to give their organs when dead, she did, her name was Elitha Alvarez, she died very young in middle thirties. She was from Idaho. My brother is trying to get a new van, with a lifter and they are very expensive. He has to keep him self heavy weight 5’5″ weighs 225 so he can carry Justin who weighs 130 and is my bother’s height. Justin is severely handicaped, can’t talke, blind, has to be fed, etc.. It’s a miracle my brother has been able to carry such a cross. please let me know what can be done for him. If you want more information, please email me.

    Comment by Fidel Alvarez | December 11, 2007 | Reply


    Comment by Crysti aka Chocolate Monster | December 30, 2008 | Reply

  8. Hi Cryati,

    Thank you for posting. Where di you live? If you email me direct I can ask afew people how to find a doctor. Here is my email

    Comment by Reggie Bibbs | December 30, 2008 | Reply

Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

%d bloggers like this: