The 2015 Sturge-Weber Foundation

       International Conference 

 Join My Family in Chicago for the 2015 Sturge-Weber Foundation Conference

Ferris Bueller spent a famous day off here andin 2015 The Sturge-Weber Foundation will be hosting its next conference in this jewel of the mid west!  Of course we are talking about our Sweet Home Chicago!  The summer of 2015 will bring the Sturge-Weber community to our fair city for what promises to be another powerful and uplifting gathering of love support, encouragement and unique insights into the condition we've all come to know so well.  Having attended my first conference in Denver last year, I can attest to the invaluable bonds that are forged at the conference.  You will have the precious and rare opportunity to meet face to face with individuals and families who have endured the same range of experiences as you have. For me, that experience along is worth its' weight in gold.  On top of that, you will have the chance to hear the most up to date information from the SWS medical community and be enlightened and encouraged by the strides that re being made every day in our common battle.  The Sturge-Weber conference is the perfect antidote to the feelings of anxiety, isolation and uncertainty that can prevail in the dark days of our individual battles.  The light of love, positivity and hope will be shining brightly in Chicago next summer.  We hope to see you there! 

Kris, Kellie, Silas, Celia and Syndey

 

Yes, the Denver International Conference was so uplifting and educational.  It was inspiring to see how many first time attendees blossomed over the weekend and made new friends. Of course, the returning attendees had been changed by their own first time encounters and exuded the confidence that shared experiences can impart.  It was exciting to have our 1st Route to a Cure Walk and we are looking forward to our 2nd one in Chicago!

I look forward to seeing y'all in Chicago!

With faith, hope and love,

Karen L. Ball, President and CEO

 

CONFERENCE OVERVIEW

Please make plans to attend as it is an event not to be missed. You and your family will benefit by:  Learning you are not alone and making those beautiful connections with others for a lifetime; Learning from stimulating discussions, as well as medical and research updates; Sharing personal connections with others who understand; Meeting others to exchange ideas, support and advice; Gaining knowledge of helpful resources; Finding participation opportunities in research to advance your understanding of Sturge-Weber syndrome and Port Wine birthmark conditions; Participating in the SWF Route to A Cure Walk in Chicago; Having a blast with new friends at the dinner dance on Saturday night!  

Thursday July 16, 2015

2:00pm-4:00pm Meet and Greet in the "Family Connect" lounge on Thursday afternoon.  This is a pre-conference gathering offering first-time attendees the opportunity to meet "veteran" families and our returning attendees will be able to reconnect with friends. Perfect place to reconnect and maybe make plans to go to the pool together!

3:00pm -7:30pm Registration Open, pick up your bag, conference materials, register for Corporate Kids Camp and Miracle Miles Route to a Cure Walk.

5:00pm - 5:30pm "First Steps" Navigating the SWF Conference and finding support along the way.  All welcome!

5:30pm-6:00pm You and the Sturge-Weber Foundation – Calling all heroes!  Come meet some real live heroes and find out how you can be one too.   

6:00pm-7:15pm:  Meet & Greet Dinner:  Enjoy dinner with old friends and new ones too! (dinner included in registration fee)

Friday July 17, 2015: Social/Emotional Topics

9:00am-3:00pm SWF Kids Camp: A sib shop will be included.  More information TBA

9:00am -3:00pm General Session and Breakout Sessions:  It’s time to celebrate that everyone has the opportunity to live the life of their dreams and learn techniques on how to negotiate any road blocks. (lunch included in registration fee).  Discussions Include:

• Bring your talents to the challenge: Panel Discussion lead by parents
• Difficulties and Grief and Caring for the Caregiver, Crystal Friesz
• Why Talk about Healthy Sexuality?  Linda Sandman, MSW, LCSW. Clinical Assistant Professor, Director of Clinical Services, Developmental Disabilities Family Clinics, UIC Department of Disability and Human Development
• Transition planning and Employment. Teresa Garate, PhD, CEO and President, Anixter Center, Research Associate Professor, University of Illino8is at Chicago
• The emotional burden of a facial port wine birthmark: Katie Grey and Solveig Hagen, medical students, University of Minnesota
• How do you seek support and how do you cope? Stephanie Tikkanen PhD, Ohio University, Assistant Professor, School of Communication Studies
• Sibiling Experience for Parents, Tammy Besser, LCSW, NCG, Jewish Child and Family Services
• How medical outcomes affect social outcomes and quality of life in adults.  Eric Segal, MD, Northeast Regional Epilepsy Group

Rick Guidotti, founder of Positive Exposure, will be at the conference taking beautiful photos as he has done at each conference.  He will also give a presentation about his work and the awarding winning On Beauty movie which Sarah Kanney, an adult with SWS. On Beauty follows Rick who refocused his lens on those too often relegated to the shadows to change the way we see and experience beauty. Check out the preview! 

4:00pm - 8:00pm 2nd SWF Route to a Cure Walk:  Working together we can make great things happen!  Our route is an approximate 1 mile walk in the Forest Preserve of Cook County ending with a picnic in a beautiful grove.  The walk location is about 12 miles from the hotel; roundtrip bus transportation will be provided. It is not too early to get started on creating your fundraising page!  Click here to join TEAMSWF Chicago Today!  

Saturday July 18 2015

9:00am – 3:00pm SWF Kids Camp

9:00am -3:00pm General Session an Breakout Sessions (lunch included in the registration fee)

Medical Speakers include:

• Kristen Kelly, MD:   Departments of Dermatology and Surgery, UC Irvine Health
• Amy Paller, MD:  Walter J. Hamlin Chair and Professor of Dermatology, Professor of Pediatrics, and Principal Investigator of the NIH-funded Skin Disease Research Center at Northwestern University’s Feinberg School of Medicine. 
• John Roarty, MD:  Chief of Ophthalmology, Children's Hospital of Michigan, Assistant Professor, Ophthalmology Wayne State University
• Jonathan Pevsner: PhD, Associate Professor in the Department of Neurology, Kennedy Krieger Institute and the Department of Psychiatry, John Hopkins Medicine
• Jeff Loeb, MD: University of Illinois, head of the Department of Neurology and Rehabilitation
• Csaba Juhasz, MD, PhD Associate Professor of Pediatrics and Neurology at Wayne Sate University, Detroit

3:15-5:00 Several Opportunities

• Private Physician Dialogs:  You will have opportunity to sign up for a 14 minute dialog with one of the medical presenters.  You will receive an email to sign up by the end of May. 
• Group Discussion with Dr. Jonathan Pevsner regarding research and GNAQ
• Advocacy meeting for those interested in getting more involved in advocacy with Dane Christiansen and Dale  Dircks of the Health and Medicine Counsel of Washington. 

6:30pm – 10:00pm Dinner Dance Party for All!  This festive event is a time for all to enjoy a lovely evening in the company of friends.  Don’t miss out on the conference video to rejuvenate us and remind us of the special bonds that have been formed during the conference. (dinner included in registration fee)  Special guests will be there to get the party going! 

Register Now!