Here are a few friends from one of the grocery story I love to shop, Fiesta. Everyone here is really nice. I ‘m here with the managers of the store, Curtis and Linda. It’s at South Main and Post Oak.
If you live in the area of this store, please stop and say hello to these nice people. Let they them know they are making a difference in the community they serve.
It’s sometimes very difficult going to new place where people don’t know you or are unfamiliar with neurofibromatosis. Nice people like Curtis and Linda make it very, very easy to live a “normal” life. They give me the courage and confidence to reach out to others about neurofibromatosis.
I just wanted to drop you a line and say how great you are! I have NF1 too and although it’s not too severe other members of my family have it pretty bad. Having the disease isn’t fun and the tumors cause a lot of pain. It doesn’t help that doctors over here in the UK know so little about it, I feel I’m teaching them sometimes! It’s put me off having children so I think I’ll stick to dogs!
I saw your video on You Tube and had a look at your website. It’s very cool and I loved the photos too. You have a gorgeous family and a good group of friends.
If one thing NF has taught me it’s never to judge anyone on the way they look and I get so mad when I see it happen on the tv or in the street. Anyway, congratulations on all that you have achieved and for making people more aware. You are an inspiration!
A friend sent me this link and I was blown away!!! They’re talking about me and my website. Here’s the link to the discussion group. I’m going to respond to their questions today! Maybe you can join me and help me out. Please?!! The Children’s Tumor Foundation is one of the leading organizations in the world involved in neurofibromatosis research and treatment.
A heartfelt thanks to our Neurofibromatosis (NF) families, doctors, volunteers, board members and donors for making the foundation a home for patient support and research for the past 25 years. You have made a difference in the most tangible, human way.
If you are new to the foundation, you have picked an important time to learn more. The year 2007 holds real promise for NF patients who have been told for decades to live with a crippling and sometimes fatal disease that has no cure and no treatment.
But critical research is going to clinical trial as I write this letter with signs that tumor growth can be stopped and implications that are enormous for both NF and cancer patients.
To ensure this kind of research continues, several NF foundations from around the country came together in D.C. this month to lobby Congress for continued research money. We are asking for $20 million in 2007 to continue the momentum of the $182.3 million dollars that have been invested in NF research since 1996 by our government and the Department of Defense.
I fully intend to look my son Drake in the eyes one day to tell him my husband Steve and I were part of a great big network of people who helped cure NF. I hope you will join us in whatever way you can to make that vision a reality for all NF patients.
Texas Neurofibromatosis Foundation
What can you do?
Join us for Dining Out in Dallas on April 12.
Write a letter to your congressmen or senator asking for continued research funding
Send an NF patient to NF Family Camp
Ok, Here is one for you. I am a lover of all desserts. Cakes Pies Cobblers, and the list goes on. My question is what is the highest amount you would pay for a specially ordered dessert? How much is too much? Whether it ‘s for yourself or someone else. One time, it was years ago, on my 18th birthday I bought myself a birthday cake. It cost me $75. At that time it was a lot of money. The cake above I can handle alone.
I had a tremendous day at the Houston International Festival!!! I made so many new friends and ate way too much food and I couldn’t be happier. Click below to see some fun photos and all the people who came up to me to “Just Ask!”
Today was another Terrific day. I had lunch with my friend Sebastian. It is always enjoyable to have lunch with friends. Sebastian works with Cirque Du Soleil. They are in town for the now playing show, Corteo. It is a very good show. You will be amazed at the talent displayed in the show. I will have a link for all of you that may want to see the show.
Texas Neurofibromatosis Foundation and
Texas Childrens Hospital/Baylor College of Medicine
2007 NF Symposium: Link to Education
Saturday, May 5, 2007
8:30 a.m.— 4:00 p.m.
Symposium Cost: Free
Overview: We are very excited to be able to provide the 2007 Annual Symposium to patients, their families, educators and caregivers affected by NF.
The Symposium is a full day program designed to address one of our most significant and endless concerns-neurofibromatosis.
For Ages 5-10
The Kids Konference will be held on the 2nd Floor Feigin Center, just around the corner from the Howland Auditorium. It will include children as arts and crafts, games, and a clown. There is limited space so sign up today for this exciting program where your kids interact with other kids with NF and their siblings.
We will provide breakfast and lunch for the children. Lunch will be cheese pizza. Please let us know of any allergies your child may have. You are welcome to bring them their own lunch or snacks for the day. Please let us know if you will be providing their own lunch. Please put your child all their belongings. Our volunteers will show you were to register your child and you will be responsible for picking them up at the end of the conference.
Parking and directions will be mailed with your confirmation packet. If you will be traveling out of town a list of hotels in the Medical Center will also be included in your packet.
The NF Symposium is approved for CPE Credit for educators. Encourage your child
Registration will begin at 8:30 a.m.
Registration Deadline: Friday, April 20
For more information call 972-868-7942
Symposium Cost: Free
Parking Cost: $10.00
If you do register and can not make it, please call and cancel by Monday, April 30 so, we do not include you in the food count.
Breakfast/Lunch : A continental breakfast and lunch will be served.
Vision and Eye Issues Associated with NF
Dr. Richard Alan Lewis
Professor, Departments of Ophthalmology,
Medicine, Pediatrics, and Molecular and Human
Genetics and Faculty Associate, Huffington Center for Aging
Tumors of the Head, Neck, and Skull Base in patients with NF1 and NF2
Dr. John S. Oghalai
Assistant Professor, Otology, Neurotology, and Skull Base Surgery,
Baylor College of Medicine
NF Patient Panel
Tentative other topics:
Dermatological Issues and Education/Behavioral
2007 NF Symposium Registration
Please provide a list of attendees for symposium on
the back of this form or separate sheet of paper if more than one person is attending for
name tags and lunch count.
Any special needs?
Please list children attending Kids Konference and their age (5-10): attach separate sheet
Please list any special needs for the children attending Kids
May we publish your name, address and phone in a directory of attendees?_________
Check if receiving CE Credit: ______CPE
List of Attendees
Please list names and addresses of those attending symposium, Use separate piece of
paper if necessary.
Please mail registration form to:
TEXAS NF FOUNDATION
6555 Sierra Drive
Irving, TX 75039-2479
Today, I again went to Cavender’s. Of course if you have been keeping up with my blogs, you know it is one of my favorite places to shop. I met with Bryan Hurta, he works there.
I shared with him the reason I was there. Its because of the star treatment I always receive when I go. Everyone in the store have always given me excellent service.
Some may feel what’s the big deal? Well any one that suffers with neurofibromatosis can understand. And you can read their stories on my blog as well. They understand what its like when people don’t understand or worse, don’t even try.
It’s not always easy walking into a new environment and wondering how people are going to react to you or treat you based on how you look. Many times I feel I need to be among friends before I can go someplace new. I get butterflies. I get concerned for my friends. I feel bad for the people working there and how they might respond.
At Cavender’s I feel like I’m among my friends! I can go there alone, be treated with respect, get help like any other customer and also get a “God Bless You!” when I leave. And you have no idea how that makes me feel!
It makes me feel TREMENDOUS!
When I meet people like I have met at Cavender’s you want to acknowledge them. Thank you Bryan Hurta for your time today. I salute you all.
Today I’m writing about one of my favorite trees. Next to the Weeping Willow it would be the California Redwood Tree. From what I have read, the Redwood grows only in California? Maybe it’s true. The Redwood trees are quite large. That is one of the reasons I like it. The Weeping Willow is a great looking tree. I love the way the leaves or the branches hang. Tell me your favorite tree and why.
What is your favorite tree ? do you have one?
You may see my spots as scattered
patches of dark merely punctuating.
But I know them merged into a tattered
cloak, enveloping and suffocating.
You may see my coarse and fleshy lumps
as merely clusters of excess tissue.
Until one sweetly human gesture stumps
you: my desperate move to kiss you.
Thus I know them as negation,
a zero in the critical equation
by which to calculate my reality,
an absence replacing personality.
You may see my face as a residence
of tumors, or challenge to a noble task,
an unsolicited testament of courage.
But I want to hide, to place a distance
between us, or interpose a gilded mask,
or, better yet, deny or even purge
my face, presenting you a void, simply
the final denial of who I am or could be.
I am phantasmagoria, a specter merely,
that we both some way deny or recant.
Thus, I stand before you vague and clearly,
cloaked and masked and vacant.
Vincent M. Riccardi
Copyright © 1989 Vincent M. Riccardi
I wanted to post a poem that was written by a dear friend of mine, who was my doctor at one time.
I am so thankful to know him.
I wanted to thank all of you who are wearing my JUST ASK! t-shirt. A lot of my friends have ordered my shirts to support me in NF awareness. Dr. Vincent Riccardi, Caren and Larry Kender, Greg Gorman, Sugar Ray Leonard, Mike and Rosie Moncrief, Dr. Bartlett Moore, Dr. John Slopis , Arthur Meyerson, Meko White , Elene White, Lou Congelio ,Elena Congelio, Peggy and George Newton, and Carmen Thomas. To name a few. It’s important to me to make sure everyone know the shirts can be ordered from my website. Thank you for your support
To those of you wearing the t-shirts, are you getting any questions or comments from people about the shirt? If so what are they saying?”
Here is a picture I found that shows a reason why anyone would enjoy a vacation in Australia. It’s called Blue Mountain. Someone else wrote to me about wonderful places to visit when in Australia. If you have had the opportunity to visit, please post your experience.
Someone also mention Melbourne, a beautiful city in the suburbs. I have also seen pictures that are truly beautiful. If you see pictures, you would be surprised. Its a lot of felmiler places form well known movies. Type it in and you will see just how beautiful places Australia has to see.
Commercials, what is your favorite commercial? We all have them. The one that come to mind for me is. Real Men of Genius. All of them make me either laugh or smile. Post one of your favorite
French Drs. Perform New Face Transplant
PARIS, Jan. 23, 2007
(AP) French doctors said Tuesday that they had performed a partial face transplant on a man whose face was disfigured by a genetic disorder, giving him a new nose, mouth and chin and replacing part of his cheeks.The 15-hour operation Monday was the world’s third partial face transplant.”The patient is doing well from a surgical point of view,” said Dr. Laurent Lantieri. Still, he added, “We will have to wait many months for the results.”The 29-year-old patient suffered from a genetic condition known as neurofibromatosis, which causes tumors to grow on nerve tissue throughout the body, the doctors said. The condition is similar to the disorder that affected Joseph Merrick, who was depicted as “The Elephant Man” in the theater and on screen.The patient had undergone about 30 or 40 surgeries over 10 years to try to improve the appearance of his face, Lantieri said. The tumors on his lips had grown so large that he could no longer eat properly or speak easily, Lantieri said.”It was the only solution,” he said.Doctors said one of the patient’s main sources of suffering was the fact that he could not get a job because of his appearance.
Despite the lifelong risks that a transplant surgery poses — episodes of rejection or even death — the patient “didn’t hesitate a single second,” Lantieri said, adding that the patient was “completely serene” going into the surgery.
The man remained sedated Tuesday, and still had not seen a picture of himself. The doctor did not release any identifying information about the patient or the donor.
Lantieri carried out the operation at Henri-Mondor hospital in the Paris suburb of Creteil.
In 2005, Frenchwoman Isabelle Dinoire received the world’s first partial face transplant after her dog mauled her. Since that surgery, a Chinese farmer also received a partial face transplant after he was disfigured in a bear attack.
The latest procedure is different because the patient was disfigured by a genetic condition, not an accident.
Lantieri, an adviser to the French medical ethics panel, had criticized the first partial face transplant, saying Dinoire’s surgeons should first have tried reconstructive surgery.
On the anniversary of Dinoire’s procedure in November, doctors said her operation was a success and that she is gaining more sensitivity and facial mobility.
Doctors in Britain and the United States are also working toward similar procedures.
In October, an ethics panel approved plans by surgeons at the Royal Free Hospital in London to carry out what could be the world’s first full-face transplant, though it said no patients had been selected yet. The Cleveland Clinic in Ohio is also working on plans for full-face transplants.
I thought this would be a good place to start. Most of you know about me, by your visit to my site. Let’s make this a meeting place for us that have neurofibromatosis, and other disorders. Anyone that would like to express there feelings and experience can post here. We can be a support to each other. Let’s start blogging. You know about me. What would you like us to know about you. You can post here. I also have my personal email for contact aswell.
If I had to choose, I would say Blue Mountains, from there it would be Sydney. See told you it hard to say just one. The pictures I saw are breath taking. I would like to know what you think? It would really be nice to hear from someone in Australia.
1. obstructive 2. central,and 3. mixed. Of the three, obstructive is the most common.
Despite the difference in the root cause of each type, in all three, people with untreated sleep apnea stop breathing repeatedly during their sleep, sometimes hundreds of times during the night and often for a minute or longer.
Obstructive sleep apnea (OSA) is caused by a blockage of the airway, usually when the soft tissue in the rear of the throat collapses and closes during sleep. In central sleep apnea, the airway is not blocked but the brain fails to signal the muscles to breathe.
Mixed apnea, as the name implies, is a combination of the two. With each apnea event, the brain briefly arouses people with sleep apnea in order for them to resume breathing, but consequently sleep is extremely fragmented and of poor quality.
Sleep apnea is very common, as common as adult diabetes, and affects more than twelve million Americans, according to the National Institutes of Health. Risk factors include being male, overweight, and over the age of forty, but sleep apnea can strike anyone at any age, even children.
Yet still because of the lack of awareness by the public and healthcare professionals, the vast majority remain undiagnosed and therefore untreated, despite the fact that this serious disorder can have significant consequences.Untreated, sleep apnea can cause high blood pressure and other cardiovascular disease, memory problems, weight gain, impotency, and headaches.
Moreover, untreated sleep apnea may be responsible for job impairment and motor vehicle crashes. Fortunately, sleep apnea can be diagnosed and treated. Several treatment options exist, and research into additional options continues.
This a question, I would like to know, have there been any studies on nf patients that believe they may have sleep apnea? I ask this, because it’s a problem I have been dealing with. I wonder if Neurofibromatosis and sleep apnea be related to the other? Is there anyone else that with nf, believe they may have sleep apena?
- 2008 Houston Highlights
- A MESSAGE FROM REGGIE
- abc news
- About Me
- ADDY Awards
- Astros Game
- Denise Terrill Golf Classic
- Emily's Name-My-Baby Contest!
- Favorite Places
- Friends of NF
- Friends with NF
- Greg Gorman
- Houston Art Car Parade
- houston astros
- houston livestock show and rodeo
- Houston Roller Derby
- Houston Texans
- International Festival
- Laurie Selzer-MNI
- M.D. Anderson
- Martina McBride
- McKee Street Bridge
- Medical Resources
- national doodle day
- NF Bulletin Board
- NF in the News
- nf inc
- Porch Swing Pub
- Some People
- Texas NF Foundation
- TEXAS RENAISSANCE FESTIVAL
- Valentine's Day
- Web Technology