Screen Shot 2013-02-18 at 2.22.39 PMHOUSTON, Feb. 17, 2013 – TheJust Ask Foundation and California NF announced today that Ricki Lake has been named the recipient of the 2013 Reggie Bibbs Humanitarian Award for her work promoting awareness of neurofibromatosis.

The award is given to an individual who has improved the lives of those challenged by neurofibromatosis, (NF) by making NF an important part of their lives.

“Those of us who have NF,” noted Just Ask Foundation founder, Reggie Bibbs, “are very sensitive to how we appear to people who don’t know about our disorder. It is so wonderful when we meet a special human being, like Ricki, who has embraced us and made us part of her life.”

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The award will be presented to Ricki Lake by noted neurofibromatosis scholar, Vincent Riccardi, MD, Medical Director ofNF California and past Director, Research Cytogenetics Laboratory at Baylor College of Medicine in Houston, Texas.

Ricki was first made aware of neurofibromatosis when she met a brave little girl, Tori, and her mother, Michelle, during a taping of Dancing with the Stars in which Ricki was competing.

Since then, Ricki and Tori’s family have formed a special relationship as Tori has appeared on The Ricky Lake Show several times to tell the world about her battle with NF.

Dr. Riccardi commented that “before and during the taping, I could see the special attachment Ricki had made with Tori and her family.

On a recent episode, Ricky introduced Tori to the audience by saying, “I want you to meet this sweet little girl. She is the most inspirational person in my life and I’m so excited to introduce my friend Tori. She is the bravest little girl I know.”

Later in the show, Ricky promised Tori, “We’re going to do everything we can to raise awareness and find a cure for this disease.”

Tori suffers from NF-1, or neurofibromatosis, a genetic condition which causes tumors to grow along nerve fibers in the body. According to Tori’s doctor, Dr. Riccardi, who also appeared on the show, kids with NF-1 can lead realistically normal lives.

Tori’s mother, Michelle, added later on Tori’s website, www.torigaga.com, “We are so grateful that we had the opportunity to talk about NF on Ricki’s show. So grateful. We would love for you to join us on Facebook or on Tori’s website. I would love to feature stories about you or your children who are bravely fighting NF. We can all learn from each other and find a cure! Please email me at michelle@torigaga.com if you’d like to talk! Thank you for watching and thank you, thank you, thank you to Ricki and the Ricki Lake show!”

NF California is the premier California NF patient support group, assisting the more than 13,000 persons with all types of NF in California. Unlike other NF organizations that focus only on children and tumors, NF California emphasizes all age groups and the many non-tumor problems.

The Just Ask Foundation represents the resourcefulness of one person with NF1 – Reggie Bibbs. Over his lifetime he often sensed that people were “put off” by the disfigurement resulting from the neurofibroma involving the entire left side of his face. He sensed that many people were distressed by his appearance and he often felt that if they would just ask him about his condition, it would be easier – for him and for them. Thus, he began a campaign to encourage people to “Just Ask!” him about his NF.

More information and opportunities for sharing are immediately available atwww.NFCalifornia.org and www.justaskfoundation.org.

 

This is a special message to all of Reggie’s friends!

Our friend, Scott Dickson is creating a video in honor of Reggie Bibbs. Scott has asked me to spread the word about this video because he needs your help to finish it.Scott would like all of Reggie’s friends who have purchased Just Ask! tshirts to send him photos of yourself in the shirt. His email is Scott Dickson wlwl@me.com

If you watch the video, you’ll see a little flying saucer flying around. Scott needs similar doodles to insert into the video. They can be of anything: stick figures of people, drawings, etc.

But hurry, to be included in video, Scott must receive by November 9th.

Take a look at the video. It is really cool and it will be even cooler with your help!

Go to https://vimeo.com/50184355
The password is Reggie1

Thanks!

Reggie Project – Open Invitation
A Note from Scott: “I hope to include lots of people in this… but I need your photos (or doodles/illustrations) no later November 9th! (the sooner the better) If you don’t have a “Just Ask!” t-shirt you can order one here: justaskfoundation.org/ E-mail me at wlwl2001@gmail.com for more instructions. [Please be sure to include “Reggie” in the subject line!] I’ll be making a “music video” with all this by the end of the year. I HOPE to eventually make something like this as well: vimeo.com/48668720 (it depends on what kind of response I get.)”
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"Just Ask!" Goes to Antartica

A friend of mine, Chad Leathers sports his Just Ask! shirt in Antarctica for a race4 research. nf. Chad and I have been friends for abut a year. He has a great story. If you enjoy good music and concerts follow the link. Tumorators. Chad has  projects going on to help fight for

a cure for nf.  Please visit his page to learn more as to how you can attend one of his concerts. I know I plan to make a surprise visit.  But don’t tell Chad. I want it to surprise him.  Thank you Chad for spreading awareness by wearing  my just ask shirt.

About The Tumornators

The Tumornators is a fundraising team started by the Leathers/Cone family in conjunction with the Children’s Tumor Foundation that is dedicated to raising money and awareness to end. Neurofibromatosis (NF) and Schwannomatosis through research.

On Christmas Eve 2006 while driving back to Georgia from one of Drew’s many surgeries at Johns Hopkins Hospital, the family decided to take a more active role in Drew’s illness. The foundation was born February 2007 when they put together a compelling slideshow telling Drew’s story that, accompanied by a heartfelt song written by Drew’s brother, Ben, appeared on the newly-formed web site.

boyspresurgeryThanks to the generosity of people like you, the grassroots campaign has raised over $100,000 to date through fundraisers, donations and with the help of friends like Atlanta Braves right fielder Jeff Francoeur and former NFL player Matt Stinchcomb and New Orleans Saint, Jon Stinchcomb.

All funds raised are donated directly to the Children’s Tumor Foundation so that Drew and others like him can live a life free of the devastating impact of tumors.

I got the surprise of my life today. Well it shouldn’t have surprised me. Sugar Ray has always been a supporter of my work in JUST ASK.  Sugar Ray wrote me.  He said, he needs a new Just Ask t-shirt, so he can continue to wear my shirt and help spread awareness of neurofibromatosis when he travels to other countries.  This is great to have someone as famous as Sugar Ray Leonard to be involved with making a difference in the  JUST ASK! campaign.  Sugar Ray always ends his notes by calling me the Champ. Sugar Ray is the real Champ!

Thank you Sugar Ray.

The University Of Texas, Health Science Center, is in the process of conducting Rapamycin clinical trials, to treat NF patients with tumors on the body.  I’m happy to say that I’m one of those being treated.  I feel hopeful as well as others members in my family. My mother and sisters are happy to take part in this study.  Second day in the study, and looking forward to what I believe will be a huge step in finding a cure for NF.   I also plan to give updates on any improvements I see on my tumors.

Anyone needing information about taking part in the study, stay tuned. I will have more information on who to contact in Houston, for The Rapamycin Therapy.

picture-1Another nite at Lou’s.  Last night steak nite,  became Music and Pizza nite.  It was quite different from our regular Thursday nite.  All of the guy’s though it would be a good idea to work on our  music and eat pizza.  Mark Sansoucy new to the Reggie Bibbs Orchestra, alone with the regulars 2William Hughes,Matt Jones, and Supporters Geo Austin  and Lou Congelio.  Our friend  wrote a song that  we loved. Mark was  inspired by JUST ASK, to write a song. The name of the song?   JUST ASK. You will enjoy it as much as I do, I’m sure of that. We hope to have the photos and videos  on the blog soon.  I would love to hear your thoughts on the idea. And I know I can look forward to terrific comments of the music.

Download Lyrics to “Just Ask!”

Watch the video.

Just Ask (A Song for Reggie Bibbs)
Music and Lyrics by Mark Sansoucy

Just ask
Just ask
And I’ll tell you all you want to know
Just ask
Just ask
All you have to do is say Hello

I see people staring at me in restaurants
When I’m hanging out with my good friends
Yes, they see the way I look
And they get a little spooked
But that’s because they don’t know what I have

So, just ask
Just ask
And I’ll tell you all you want to know
Just ask
Just ask
All you have to do is say Hello

Pull your chair on up and come on over
I don’t bite, but sometimes my friends do.
Yes, we like to clown around
When we hit the town
But just like you they stepped on up and asked

So, just ask
Just ask
And I’ll tell you all you want to know
Just ask
Just ask
All you have to do is say Hello

Living a life like mine it isn’t easy
Sometimes I don’t want to leave my house
But I can’t live in fear
For those who hold me dear
Cause they know it’s what’s inside that really counts

So, just ask
Just ask
And I’ll tell you all you want to know
Just ask
Just ask
All you have to do is say Hello
All you have to do is say Hello

donate_onlineThank you for your interest in helping raise awareness for NF. With your help, I hope to spread the word about neurofibromatosis through web, viral, web-related resources, and personal appearances at events throughout the country

Unfortunately due to my not being rich, i.e. poor, I don’t have the financial resources to underwrite all the funding we need to meet my objectives. Thanks to Lou, I have been able to attend all of the functions you see in these photos courtesy of Lou.

I want to raise awareness of neurofibromatosis so that people affected as severely as myself can be accepted into society and lead a “normal” life. That’s why Lou and I and Matt and Geo and William and Shana go out together. When people see other people acting normal around something they don’t understand, they feel ok about it and figure there’s nothing wierd happening and they’re fine. Continue reading

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