Lou and I went to the Psych Ward Siren Fundraiser. It was the perfect thing to do today. I had a terrific time with great friends. What made it fun, was I had a chance to talk to the siren’s away from the ring. It was my time to be there supporting a team that have been there for me, Supporting my Just Ask campaign. Also I met a few new friends. Jimmy Brewer, and his Brother. Jimmy’s brother introduce me to the band. If you like the bag pipes, you will love this band. The music was great. They played Amazing Grace. That was the best. Houston Highlanders Pipe Band. I can get you in contact with them if you are needing a Bag Pipe Band. Enjoy the photos, and yes I was playing the bag pipes NOT!
Doyle Brunson #1 (The Legend of Poker: 10 Time WSOP Champion)
Bruce Robison (TX songwriter & recording artist)
Kelly Willis (Alternative Country’s Golden Goddess; wife of Bruce Robison)
Darden Smith (TX singer-songwriter – “Loving Arms”, “Levee Song”)
Sara Hickman (Official State Musician of TX)
What a great night at the Roller Derby. Please meet my new friends in the photos above. The friends above made the night special f. I don’t remember the little girls name in the photo. She was specially nice, and caring. Seem to be concern about me. I hope she knows that because of her and her Dad and friends I had a terrific night. Thank you for asking about nf, and for taking a photo with me.
Of course it is always fun watching all the roller derby action. All of the teams are good at what they do, Roller Derby, a good place for anyone to go, and get treated as if, you of you are the champs. All the teams treat the fans as if we are playing. Hats off to all of the HRD for treating the so special.
Hooray! It’s National Doodle Day! The eBay auction to benefit NF, Inc. begins today, May 13th, at 6pm ET, 3pm PT, 10pm GMT. We have an awesome combination of celebrity Doodlers and superb artists, illustrators, cartoonists and caricaturists for a total of 161 Doodles!
Before the auction begins, view the Doodles alphabetically or by category at www.doodledayusa.org/gallery/v/2010/.
Once the auction begins, you can go straight to eBay and search on seller nfinccharity or you can click on the eBay link at www.doodledayusa.org.
The doodle auction started about an hour and a half ago!
I have made links that go directly to your auction page as well as the auction pages of Kevin Nealon, Sarah Silverman, and Sugar Ray Leonard.
And this is the link to NF, Inc.’s eBay page with all the doodles
THANK YOU VERY MUCH!!! 🙂
My friend Donna St. Pierre, from facebook contact and ask if she could paint a portrait of my face. After see her amazing work of other people with facial differences as well as ll the other faces. I was impressed. I felt honored Donna ask to do a portrait of me. Please visit her website to see more of her work.
Reggie Bibbs is a highly inspirational man living in Houston, Texas. He was born with neurofibromatosis (NF), a genetic disease which causes him to develop tumors on his body. NF can be a subtle disease, but in Reggie’s case it has left him with a disfigured face. After years of public frustration, he launched a unique one-man campaign to call attention to this disease.
“I have neurofibromatosis. It’s a disorder that causes tumors to grow along my nervous system. In my case, it’s fairly disfiguring. When I would go out in public, people would stare or, worse, walk away. So I came up with an idea for a t-shirt and the rest, as they say, is history.”
With the help of a friend at a local advertising agency, Reggie Bibbs created a t-shirt that would invite people to come up and talk to him about his disorder. “I figured the more they knew about my disease, the more they would understand me.”
“When Reggie called me with the idea for a t-shirt that read, ‘Just Ask’, I literally had tears in my eyes, said long-time friend Lou Congelio, president of STANANDLOU Advertising. The idea was so simple and so powerful that I immediately offered him a position in the company.”
The t-shirt features on the front an abstract outline of Reggie’s face and, on the back, large type that simply says,’JUST ASK!’. Also included on the back is the url for Reggie’s website, www.reggiebibbs.com.
Today, Reggie is also on MySpace and Facebook and has an online store on his website. He’s been interviewed by Wikinews too.
Earlier this year, STANANDLOU and Reggie won 2 Gold ADDY Awards, one silver ADDY, and a Special Judges Award for Public Service Adversiting for their new “Just Ask” ads!
Reggie said, “I am thankful that the work here on the Just Ask campaign is getting noticed. More people will learn about NF as we keep pushing forward. Thank you all for supporting the site with your visits.”
On April 14, 2009, the Just Ask Foundation became exempt from Federal income tax under section 501(c)(3) of the Internal Revenue code.
To learn more about NF and Reggie, visit Reggie’s award-winning website and join him and his friends at the Neurofibromatosis Cafe.
Our friends William Hughes and Matt Jones produced this amazing video to honor Reggie and to help him in his effort to increase awareness of neurofibromatosis. Well done, guys!
I was invited for the second time to attend the Walk With Grace event for the Neurofibromatosis Support Group of West Michigan. I’m thankful to be included. I will be a guest at the home of my friends, Debbi and Matt Hanlon. I’m looking forward to the visit and seeing the Hanlon family once again and their beautiful daughter, Grace, as they are very nice people who really care about raising awareness of NF.
The Neurofibromatosis Support Group of West Michigan was founded in January, 1985 by Sue deGroot, MSW, a social worker at Spectrum Health in Grand Rapids. Of the 45 people who attended the first meeting, most had little or no information about NF or were misinformed. Nearly everyone thought neurofibromatosis was a rare disease, and theirs was the only family they knew affected by it. Today we know that NF affects one in every 3-4000 births and is the most common genetic disorder affecting the nervous system.
usually at the Blodgett Campus of Spectrum Health. Families come to meetings from Kalamazoo, Holland, Muskegon and parts in between, as well as from Grand Rapids. Meetings usually feature a speaker on a topic related to NF and ample time to meet people with similar concerns. The annual picnic (last Sunday in July) and Christmas Party (first Saturday in December) are both popular events.
Educational materials are provided free to NF individuals and families and to their physicians, teachers, social workers, etc. Newsletters and email messages keep the membership informed of group activities, research developments, available services, and more. In 2004 the newsletter is reaching nearly 800 households and 400 professionals. The support group is particularly proud of the NF Clinic which opened at Blodgett in 1989 – the only NF Clinic on the west side of Michigan.
It is extremely stressful, even frightening, to have a family member diagnosed with a genetic disorder. The support group wants every person and family affected by neurofibromatosis to have somewhere to call for information and someone to talk to. No one should feel alone in dealing with these concerns.
The goals established for the neurofibromatosis support group in 1988 are still valid and viable in 2004. Our goals are:
1. To provide emotional support for persons affected and their families.
2. To assist NF families in getting appropriate medical care.
3. To educate ourselves and the public about NF.
4. To assist the medical community in better recognizing and diagnosing NF.
5. To encourage research through participation and, for those able, through financial contributions.