neurofibromatosis cafe

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

“Dear Congressman, we need money for NF research!”

3273717777_fbd42738b0_bFriends and Colleagues –

As you may know I go to DC every year to ask Texas congressman to sign on to the below letter. Please help further these efforts by going onto http://www.congress.org/congressorg/officials/congress/?district=26&lvl=C&azip= 1) TYPE in your zip 2) get your congressman’s email (left side/ federal) 3) forward on the following letter (cut and paste).

It’s that simple – Again – this will help us get our 20 mill. for NF research. Each year we get closer and closer to a treatment for NF. Please help continue this process by taking 5 min. out or your time to write. Continue reading

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March 16, 2009 Posted by | neurofibromatosis, Research, Texas NF Foundation | , , , , | 7 Comments

A Meeting With Congresswoman Sheila Jackson Lee!

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I had a terrific meeting with Congresswoman Sheila Jackson Lee this morning!

Joining me at the Mickey Leeland Federal Building in downtown Houston this morning were Drs.Bart Moore and John Slopis from M.D. Andersen Cancer Center; Sandra Parker and her daughter, Emily,  Lou and myself. Sandra is a consumer reviewer for the research integration panel for the Department of Defense. She helps decide which NF research projects get funded based on consumer need and importance.

Congresswomen Jackson took time to meet with us even though she was hard-pressed for time having to fly back to Washington immediately after our meeting. I have to say she was great! She remembered me from a NF function years ago and was genuinely interested in everything we had to say. She seemed quite interested in our story (Emily’s and mine) and after getting all the information she needed,  told us that she would sign the petition to fund research for neurofibromatosis.

Congresswoman Lee also recommended other possible sources of funding that we should be aware of through the government. She will be signing on to keep funding research that will help neurofibromatosis, as well as other types of disorders that could lead to cancer. Everyone should be happy about that has happen today. All of us can benefit from this funding and from the wise support and leadership of Sheila Jackson Lee!         – Reggie

March 9, 2009 Posted by | neurofibromatosis, Research | 16 Comments

Carolyn Farb Endowed Lecture in Neurofibromatosis

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Reggie Bibbs, Dr. Bart Moore, Carolyn Farb, Roger Packer, M.D. & Dr. John Slopis

The Carolyn Farb Endowed Lecture in Neurofibromatosis,

“Molecularly-driven Clinical Trials for Children and Young Adults with NF1″

Speaker: Roger Packer, M.D.

Executive Director and Chariman, Dept. of Neurology, Childrens’ National Medical Center, Washington, DC

Today was the Carolyn Farb Endowed Lecture Dealing with Neurofibromatosis, Roger Packer M.D. Spoke on Neurofibromatosis type1 and other topics, what could be good news for those of us that are affected by Neurofibromatosis. Lou videod if so we hope to have the video on the site soon.

You can see what Doctor Packer spoke about. I was there and I met the doctor along with Carolyn Farb, who made it possible for the NF clinics at MD Anderson. I know I felt great after hearing the lecture. Maybe you will as well. When we load the video watch and comment here. It may take time to get the video on, but I know we will have it for you. Thanks

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December 15, 2008 Posted by | Awareness, M.D. Anderson, Medical, Medical Resources, News, NF1, Research | 17 Comments

Baylor College of Medicine monthly genetic series to focus on neurofibromatosis at Health Museum of Houston

logo.gifHOUSTON — (March 4, 2008) — A discussion on neurofibromatosis, a genetic disorder that causes tumors to grow on nerve tissue, producing skin and bone abnormalities, will be presented in a public forum March 25 at The Health Museum of Houston.Neurofibromatosis is one of the most common genetic disorders, occurring in approximately one in 3,000 births.

The forum will feature genetic expert Dr. Maria Blazo, assistant professor of family and community medicine and molecular and human genetics at Baylor College of Medicine in Houston. The parents of a child with neurofibromatosis are also scheduled to speak.

Organized by BCM and Texas Children’s Hospital, the event is part of a monthly “Evening with Genetics” lecture series organized by BCM’s Department of Molecular and Human Genetics. The series offers current information regarding care, education and research about genetic disorders.

The program is free and open to the public. It will be held at 7 p.m. at The Health Museum of Houston, 1515 Hermann Drive. For more information or to register, contact Susan Fernbach at 832-822-4182 or fernbach@bcm.edu

March 11, 2008 Posted by | Awareness, Medical, Medical Resources, neurofibromatosis, Research | 49 Comments

Ok, Reggie, whose butt did you have to kiss for this?!!

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Reggie,

Per our conversation on the phone, I would like to welcome you to the Honorary
Board of the Texas Neurofibromatosis Foundation. It is a privilege to have you on the board.
The foundation appreciates all you have done for Texas NF and NF awareness.

We look forward to working more with you in the Houston area.
Talk to you soon.

Cindy Hahn, M.Ed., Managing Director, Texas Neurofibromatosis Foundation Continue reading

January 17, 2008 Posted by | About Me, Awareness, Fundraising, neurofibromatosis, nf, NF in the News, Organizations, Research, Texas NF Foundation | , , , , , | 218 Comments

HAPPY NEW YEAR 2008

01a-wrap-cover_splash.jpgHappy New Year 2008!!!

Well, a year has passed and we are at a new beginning. I look forward to great things this year. Maybe something new for NF research. Let’s keep hope alive. Now lets talk resolutions. Or promises, or whatever you want to call it. Something I want to do this year is build up my friends list to at least 200 or 300 friends with NF on myspace.com dailystrength.com or youtube.com Any one of the three. Oh yea, one more thing. drink more Starbucks and hopefully meet with some of my friends that I talk with everyday about coffee.

On a serous note. Please remember our real HEROS in 2008 in the U.S. ARMY, and military service members. When you see someone in uniform say thank you.

January 2, 2008 Posted by | About Me, Awareness, Friends, Friends of NF, Fun, Fundraising, Just Ask!, neurofibromatosis, Research | , , , , , , , | 150 Comments

Reggie Bibbs Wikinews Interview

17115693_160x120.jpgReggie Bibbs was interviewed on Nov 23, 2007 for Wikinews describing what it is like living with neurofibromatosis and what he has done via his website, blog and other resources to increase awareness of NF.”

Click to watch Reggie Bibbs interview on Neurofibromatosis

November 29, 2007 Posted by | About Me, Awareness, Blogs, Celebrity, Friends with NF, M.D. Anderson, neurofibromatosis, Research, Texas NF Foundation, Video | , , , , | 24 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

Texas NF Foundation presents $90,000 check to MD Anderson

thecheck6.jpgToday I was invited to join members from the Texas NF Foundation and doctors from MD ANDERSON HOSPITAL for a special presentation.

Minerva Terrill, a board member of the Texas NF Foundation, presented a check for $90,000 to the hospital for NF research. This is something all of us who are affected with NF can be very excited about.

Great researchers and clinicians are out there looking for a cure and there are great people like Minerva and Cindy Hahn who are doing what they can to raise the funds needed to fund that research. We have a lot to look forward to. Stay tuned! I know more good news is ahead.

June 21, 2007 Posted by | Awareness, CTF.ORG, Friend, Friends, Fundraising, http://www.ctf.org, Medical, neurofibromatosis, News, nf, NF Bulletin Board, NF1, Photos, Research, Texas NF Foundation | 5 Comments

HOPEFUL NEWS IN NF RESEARCH

NZ bee compound gives tumours the buzz-off

By Martin Johnston

Bees collect propolis to seal their hives.

Bees collect propolis to seal their hives.

A bee product from New Zealand has been shown to suppress tumours in mice, says a study presented to a scientific conference in the United States.

The researchers at a German hospital tested propolis against tumours that can occur in the nervous system and on skin in a condition called neurofibromatosis. Continue reading

June 14, 2007 Posted by | Appearances, Awareness, Medical, neurofibromatosis, News, nf, NF1, Research | 4 Comments

Barack Obama Doodle Earns $2,000 for NF Research!!!

A doodle by Senator Barack Obama sold for over $2000 on eBay today. The drawing, featuring fellow senators Harry Reid, Dianne Feinstein, and Edward Kennedy, was sold as part of the National Doodle Day initiative. National Doodle Day sells celebrity sketches to raise funds for Neurofibromatosis, Inc.

May 30, 2007 Posted by | Awareness, Fundraising, neurofibromatosis, Research | , , , , , , , , | 5 Comments