Neurofibromatosis Cafe A place to talk, have fun and share.

HOUSTON, Feb. 17, 2013 – The Just Ask Foundation and California NF announced today that Ricki Lake, host of The Ricki Lake Show,  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.”

The award will be presented to Ricki Lake by noted neurofibromatosis scholar, Vincent Riccardi, MD, Medical Director of NF 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 at www.NFCalifornia.org and www.justaskfoundation.org.

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

A while back, we asked Facebook friends of Reggie Bibbs to submit any questions that they may have about neurofibromatosis. We then asked our favorite NF doctor, John M. Slopis, of M.D. Anderson Cancer Center to share some of the answers he had to your questions. The attached video is what he had to say.

Yesterday, my friend, Connie, picked up Shiner, Reggie’s beloved Golden Retriever, to take him to the vet. Shiner was scheduled to have two large fatty deposits removed from his face.

While prepping Shiner for surgery, the vet noticed that Shiner had a hard time breathing and shot an xray.

He found large tumors on Shiner’s lungs.

The vet told Connie that Shiner had possibly three weeks to live but the humane thing would be to relieve his suffering.

Reggie agreed and Shiner was put to sleep.

Connie sent me this email this morning:

Good morning Lou,

Thanks for taking Reggie out last night, I know it was a huge relief for him to get out of the house.

Everything went well yesterday considering, like you suggested Jaen and I took an ultimate cheeseburger to Shiner. As Jaen was unwrapping the burger I told him to break off little pieces. Just as the words were coming out of my mouth, Shiner grabbed the whole burger and swallowed it leaving only Jaen’s fingers and the top bun. The bun was swallowed whole next. It gave us a laugh and another thing to remember Shiner by.

The process was very peaceful, Shiner was amazing and I think he knew we were going to ease his discomfort. He was surrounded by love I stayed in front of his eyes soothing him and rubbing his nose. More than anything I wished that Shiner had more time and we could have removed the tumors. I just didn’t realize how bad off he was and Dr. Loudat commented on how much his health had declined over two weeks.

My only regret is that Reggie and his family didn’t get to say goodbye but maybe it’s something they couldn’t do and maybe it would have upset Shiner. I knew it could happen but I didn’t think when I took Shiner yesterday morning that it would be the last time Reggie would see him. He commented on how strange the house felt after I left since Shiner had always been there when he was. I know Reggie is strong and has endured more suffering than all of us combined but I do hope this lose isn’t too hard on him.

Shiner’s ashes should be ready in a few days. I’ll let you know when they come in, maybe we can do something special for Reggie and his family to honor Shiner.

I told Reggie when the time was right for him there will be another four legged friend that will need him.

Love,

Connie