neurofibromatosis cafe

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

PLEASE HELP ME & THE TEXAS NF FOUNDATION SET-UP HOUSTON NF SUPPORT GROUPS AND EVENTS

logo.jpgDear friends, while I was up in Dallas last week helping with the Denise Terrill Golf Classic benefitting NF, I got to talking with a few members of the Texas NF Foundation and we think it’s time that Houston had their own NF support group again.

Back in the 90’s, the Texas NF Foundation actually had an office here in Houston to help those in the area afficted by NF to get the medical help they needed. And just as important. support in their daily lives. Continue reading

October 28, 2007 Posted by | Benefit, Favorite Places, Friend, Friends, Friends of NF | , , , , | 58 Comments

Reggie Bibbs – Denise Terrill Golf Classic Benefitting NF

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Reggie was asked to say a few words and, from what I heard, did a tremendous job!

The Denise Terrill Charity Classics is an organization of volunteers whose purpose is to organize and operate the Denise Terrill Charity Tennis Classic and the Denise Terrill Charity Golf Classic. The goal of these charity tournaments is to raise money for research to find a treatment and cure for neurofibromatosis-2.

CLICK HERE TO WATCH NEWS STORY ON DENISE TERRILL

CLICK HERE FOR PHOTOS

October 25, 2007 Posted by | Awareness, Denise Terrill Golf Classic, Fundraising, neurofibromatosis, Research, Texas NF Foundation | , , , , , | 15 Comments

Minerva and Robert Terrill’s Story (Video)

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Raising awareness of the disease their daughter has been fighting since she was 4 years old has been a top priority for Minerva and Bob Terrill of Dallas. Denise Terrill, now 29, has neurofibromatosis, a disease that has caused tumors to grow along her central nervous system, severely damaging her brain stem.

Dr. Bob Terrill, Denise’s father and a dermatologist, diagnosed his daughter’s disease when she was a toddler. Since then, Denise has endured 18 major surgeries, the first of which occurred in 1990 and resulted in her hearing loss. Confined to her bed for almost 10 years, she has lost sight in one eye. She requires a ventilator to breathe and receives nourishment through a feeding tube. Continue reading

May 22, 2007 Posted by | Friend, neurofibromatosis, Texas NF Foundation | , , , , , | 5 Comments

SHARE YOUR NF EVENT PHOTOS

charles-reggie-bob.jpgI set up an Flickr account for Texas NF photos and I would like people to go to Flickr and upload your favorite photos. Or if you don’t know how, you can send them to me. I will upload them for you. Here is the link. http://www.flickr.com/groups/344939@N24/

Maybe you have pictures from camp you want to share. Or maybe a support group. I hope to see your photos soon.

May 21, 2007 Posted by | A MESSAGE FROM REGGIE, Links, neurofibromatosis, News, nf, NF1, Photos | , , , , | 5 Comments

Texas NF Foundation, NF Family Camp, September 7-9, 2007

camp_all.jpgNF FAMILY CAMP, CAMP FOR ALL
SEPT 7 – 9, 2007, Burton, TX

Texas NF Foundation is thrilled to bring you the 16th Annual NF Family Camp. The purpose of this camp is for families affected by NF to connect with one another in a place where our commonality is NF. It will be a time to learn and laugh as we make meaningful relationships with new friends and grow closer to our own families. Continue reading

May 20, 2007 Posted by | Favorite Places, Friends, Fun, neurofibromatosis, Texas NF Foundation | , , , , , , | 5 Comments