Posted on

ATTENDING THE MAY 5TH NF SYMPOSIUM

To all of you have have been supporting me, by your visit to my site and leaving comments on my blog. I do plan to attend the nf symposium. May 5th is the day I have marked on my calender. I would love to meet all of you that have been a part of the great things that are happening on my site. I will be proudly wearing my JUST ASK t-shirt. I hope to see you there. If you plan to attend. post it here. Looking forward for making new friends.

Posted on

TEXAS NF FOUNDATION SYMPOSIUM, MAY 5, 2007 IN HOUSTON!

nflogo.jpg

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

Phone: 972-868-7942 Email: [email protected] / Website: www.texasnf.org

MD Anderson NF Clinic

Baylor College of Medicine

Texas Children’s Hospital

2007symposium-1.pdf

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.

Kids Konference
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.
Other Information
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.
CE Credit
The NF Symposium is approved for CPE Credit for educators. Encourage your child
Other Details
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.

TOPICS

Update on Genetic Testing in NF1 and NF2
Dr. Sharon Plon
Clinic Chief, NF Clinic, TX Children’s Hospital
Associate Professor of Pediatrics and Molecular and Human Genetics, Baylor College of Medicine

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

Research Update
Dr. John M. Slopis
NF Clinic Medical Director, MD Anderson Cancer Center
Associate Professor of Pediatric Neurology
MD Anderson Cancer Center

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
Issues

2007 NF Symposium Registration
Name: _________________________________________________________________
Address:________________________________________________________________
City:___________________________________________________________________
State/Zip:______________________________________________________________
Home Phone:____________________________________________________________
Email:_________________________________________________________________
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?
________________________________________________________________________
________________________________________________________________________
KIDS KONFERENCE
Please list children attending Kids Konference and their age (5-10): attach separate sheet
if needed
_______________________________________Age:_______NF:_______
_______________________________________Age:_______NF:_______
_______________________________________Age:_______NF:_______
_______________________________________Age:_______NF:_______
Please list any special needs for the children attending Kids
Konference______________________________________________________________
_____________________________________________________________
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.
Name:_____________________________________________________________
Address:____________________________________________________________
Phone:_____________________________________________________________
Email:_____________________________________________________________
Name:_____________________________________________________________
Address:___________________________________________________________
Phone:_____________________________________________________________
Email:_____________________________________________________________
Name:_____________________________________________________________
Address:___________________________________________________________
Phone:_____________________________________________________________
Email:_____________________________________________________________
Name:_____________________________________________________________
Address:___________________________________________________________
Phone:_____________________________________________________________
Email:_____________________________________________________________

Please mail registration form to:
TEXAS NF FOUNDATION
Attn: Symposium
6555 Sierra Drive
Irving, TX 75039-2479
Phone: 972-868-7942

Email: [email protected]nf.org / Website: www.texasnf.org

MD Anderson NF Clinic

Baylor College of Medicine

Posted on

My Friend, Doctor and Hero – Dr. Vincent M. Riccardi

reggievmr1.jpg

Posted on

A POEM FROM A FRIEND OF MINE

phantasm.jpg

Reggie’s lament

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

docric.jpg

 

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.

 

Posted on

MY HEART BELONGS TO CAROLYN FARB!

bigredheart3.jpgI want to thank Dr. Carolyn Farb for the difference she has made in my life. My friend Carolyn is a big part of my success. It was Carolyn who had the idea to put on a huge fashion show on Valentine’s Day in the middle of the Galleria Ice Skating rink. She called it MY HEART BELONGS TO DADDY and had a lot of celebrities in it like Warren Moon, Carl Lewis, Governor Bill White, and lots more!

It was very successful and all the money went to open the NF Clinic at M.D. Anderson Cancer Center.

I am so thankful to Carolyn for making it possible for all of us to have a place to go who suffer with NF. That is just one of the many fundraisers that Carolyn has done for the foundation I’m happy to be a part of. Of course Carolyn has helped tons of other organizations like the Texas NF Foundation.

Everything that I have learned from Carolyn has gone into my “Just Ask!” awareness campaign. My website is to bring awareness to NF, and I hope all of us that have NF can meet here for support from one another.

I thank you Dr Farb. My Heart belongs to you.