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General News
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Annual Tribute Dinner in San Diego |
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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
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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.
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Everybody Needs Somebody Video |
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Check out the 2011 SWF Conference Video: Everybody Needs Somebody Sometimes Video
July 17-19, 2011
Orlando, Florida
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2011 SWF International Conference Highlights |
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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.
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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.
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| 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: |
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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.
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| The following sponsors helped 47 individuals receive some type of assistance to attend the conference this year through their generous gifts: |
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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.
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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
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and we will add them to the gallery.
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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
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SWF Textbook, 2nd Edition |
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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
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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
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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
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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
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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
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