General News
Annual Tribute Dinner in San Diego

It's time to get ready to make plans to attend

The Sturge-Weber Foundation Dinner

to pay tribute to

Dr. Brian Zelickson and Dr. Eric Bernstein

 

Friday, March 16, 2012

6:30pm-9:30pm

On Broadway Event Center

615 Broadway, San Diego, CA  92101

 

CLICK HERE FOR COMPLETE DETAILS!

 

Check out 2012 Sponsors to date

 

Pay Now on secure webiste

 

 

 

 

Reserve your table today!  Contact Bonnie Ayers at 973-895-4445 x 106 This e-mail address is being protected from spambots. You need JavaScript enabled to view it

 

Thank you for your commitment to The Sturge-Weber Foundation.  Through our combined dedication and collective efforts, the SWF will always be a champion for those we serve.

 

 

 
Everybody Needs Somebody Video

Check out the 2011 SWF Conference Video: Everybody Needs Somebody Sometimes Video 

July 17-19, 2011

Orlando, Florida

 

 
2011 SWF International Conference Highlights
                                   img_6466                              

The 12th SWF International Conference welcomed 177 eager individuals ready to learn more, share experiences, reconnect with old friends and make new ones at the Marriott World Center Resort in Orlando, Florida July 17-19th

 

The conference kicked-off with a Meet & Greet Dessert Welcome Reception followed by 2 full days of medical and self help presentations by a prestigious panel of guest speakers.  A heart-felt thank you is extended to this prestigious group of professionals who took time out of their busy schedules to make the conference a success.  Available presentations are listed under each respective presenter.

 

 In addition to the prestigious guest speakers, we still have many people to thank for generously donating their time and talents:

Workshop Facilitators:  Lindsay Bach, Don Christian, Lisa Peterson and Julia Terrell

General Session Facilitators:  Jason Roffers and Jenna Simon

Dinner Dance Motivational Speaker:Joanne Tronconi

Child Care Volunteers:  Rosie Click, Ali Frana and Larissa Hoth

Men's Pizza Lunch:  Mitch Ribak

Registration Table:  Cathy McGee

SWF Water Bottles:Mitch and Jeanette Ribak

Video Assistant:  Kaelin Ball 

 

Thank you to everyone; your assistance was invaluable.  The SWF is fortunate to have such wonderful, caring individuals in our circle of friends.                  

volunteer

 

Conference Sponsors:  Conference sponsors made a difference to everyone in attendance at the conference this year.  A huge thank you is extended to the following individuals, foundations and corporations for making the SWF 2011International Conference a reality: 

 

pnc foundation

The $10,000 grant from the PNC Foundation and the $5,000 grant from the Robert & Joan Dircks Foundation afforded 46 children the opportunity to attend camp for 2 full days, lunch included both days, at no cost to their families.  This was a savings of over $300 per camper.  

dircks

 

The following sponsors helped 47 individuals receive some type of assistance to attend the conference this year through their generous gifts:

 

goldman

Goldman Sachs generously donated $50,000 last year.  The SWF allocated $10,000 to the scholarship fund.

 

The Doherty Family raised $1460.00 at a fundraiser to support the SWF Conference Scholarship fund in May.

 

Jerry Puorro donated $500 to the conference scholarship fund.  

                   chris                                                  

 

     

Thank you to our friends at Glytone and Avene for their generous product donations of Glytone Suncare30 SPF Sunscreen and AVENE Thermal Spring Water found in your registration bags.  

   

The conference wrapped up with a dinner dance with great food, dancing, conversation and fun!   Thank you to DJ Shawn of SubSonic Event Djs for keeping the evening fun and upbeat.

 

We hope everyone left the conference with new energy, increased knowledge, lifelong friends, inspiring ideas and more self confidence.  Through our combined dedication and collective efforts, The Sturge-Weber Foundation will always be a champion of hope for those we serve.

 

Don't miss out on the Conference Video and Photo Gallery!  PS:  Do you have pictures to share?  Send them to Bonnie at This e-mail address is being protected from spambots. You need JavaScript enabled to view it and we will add them to the gallery.

            avene thermal spring water 50ml      

 

 

 glytone

                          

  

 
Volunteers Happenings

Thank you to everyone who sponsors third party events to benefit The Sturge-Weber Foundation. So many aspects of SWS and associated Port Wine birthmark conditions are out of our control but our ability to raise money, raise awareness and support each other is within our control if we have the will to do it. As a part of the SWF community, we all need to join hands to keep the torch burning so the thousands of people being served over the past 24 years will continue to be served by the SWF’s toll free access line, family networking program education, physician referral service, medical education programs and research endeavors.  The SWF was here for you yesterday, is here for you today and with your help we will be here for you tomorrow and future generations.

 

 

Check out Volunteer Happenings to see what volunteers are doing to help.  Don't see your listed?

Contact Bonnie at This e-mail address is being protected from spambots. You need JavaScript enabled to view it .

 
SWF Textbook, 2nd Edition

 

 

Text Book

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Sturge-Weber syndrome is an enigmatic disorder, seldom

difficult to diagnose but often difficult to treat.  This book

consolidates what is known about Sturge-Weber syndrome

in the hope that this information will be useful in the care of

patients and serve as a stimulus to encourage research on

some of the remaining questions about the syndrome. 

 

The second edition is edited by two fo the world's key opinion

leaders in the field of Sturge-Weber syndrome clinical and

scientific research. 

 

To purchase a textbook:

Domestic Orders Click Here 

International Orders Click here

 

 

 

CONTENTS
Dedication............................................................................................7
Contributors.........................................................................................9
Foreword............................................................................................13
Preface to the First Edition.................................................................15
Preface to the Second Edition............................................................17
Chapter 1
Overview of Sturge-Weber Syndrome................................................19
Chapter 2
Cutaneous Manifestations of Sturge-Weber Syndrome ....................33
Chapter 3
Ophthalmological Features of Sturge-Weber Syndrome....................53
Chapter 4
Neurological Features of Sturge-Weber Syndrome............................69
Chapter 5
Psychological Dysfunction from Sturge-Weber Syndrome................95
Chapter 6
Radiographic Features of Sturge-Weber Syndrome.........................109
Chapter 7
Neurosurgical Treatment of Sturge-Weber Syndrome......................149
Chapter 8
Other Congenital Vascular Abnormalities.........................................157
Chapter 9
The Sturge-Weber Foundation.........................................................165
Appendix
Resource Guide................................................................................169
Index 174 or 175

 

CONTRIBUTORS
Bálint Alkonyi, M.D.
Research Associate
PET Center, Children’s Hospital of Michigan
Detroit, Michigan

Karen L. Ball, President and CEO
The Sturge-Weber Foundation
P.O. Box 418
Mt. Freedom, New Jersey 07970-0418
(973) 895-4445
(800) 627-5482
FAX: (973) 895-4846
This e-mail address is being protected from spambots. You need JavaScript enabled to view it
www.sturge-weber.org

John B. Bodensteiner, M. D.
William Pilcher Chair of Pediatric Neurology
St. Joseph’s Children’s Health Center
The Barrow Neurologic Institute Phoenix
Phoenix, Arizona

Joanna M. Burch, M.D.
Associate Professor of Dermatology and Pediatrics
University of Colorado School of Medicine
Director, Pediatric Dermatology Clinic at Denver Children’s Hospital
Denver, Colorado

Lynn Chapieski, Ph.D.
Associate Professor of Pediatrics
Pediatric Neuropsychology
Baylor College of Medicine
Texas Children’s Hospital

Harry T. Chugani, M.D.
Professor and Division Chief
Pediatric Neurology and PET Center
Children’s Hospital of Michigan
Detroit, Michigan

Anne M. Comi, M.D.
Associate Professor of Neurology and Pediatrics
Kennedy Krieger Institute
Johns Hopkins School of Medicine
Baltimore, Maryland

 

Sharon F Freedman, M.D.
Professor of Ophthalmology and Pediatrics
Duke University Eye Center
DUMC 3802
2351 Erwin Road, Durham, North Carolina 27710
(919) 684-0584
FAX: (919) 684-6096

Ronald T. Grondin, M.D., MSc, FRCSC
Assistant Professor of Neurosurgery
Ohio State University College of Medicine Attending Physician
Nationwide Children’s Hospital
Columbus, Ohio

Geoffrey Heyer, M.D.
Division of Child Neurology
The Ohio State University College of Medicine
Nationwide Children’s Hospital
Columbus, Ohio

Csaba Juhász, M.D., PhD
Associate Professor of Pediatrics and Neurology
Wayne State University School of Medicine
PET Center, Children’s Hospital of Michigan
Detroit, Michigan

Joseph G. Morelli, M.D.
Professor of Dermatology and Pediatrics
University of Colorado Denver School of Medicine
Head, Section of Pediatric Dermatology, Denver Children’s Hospital
Denver, Colorado

E. Steve Roach, M.D.
Professor of Pediatrics and Neurology
The Ohio State University College of Medicine
Nationwide Children’s Hospital
Columbus, Ohio

Tammy L Yanovitch, M.D. MHSc
Assistant Professor of Pediatric Ophthalmology
Duke University Eye Center
DUMC 3802
2351 Erwin Road, Durham, North Carolina 27710
(919) 684-0584
FAX: (919) 684-6096
This e-mail address is being protected from spambots. You need JavaScript enabled to view it

 

 

 
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