The Sturge-Weber Foundation Education Day was hosted by Dr. Alex Levin and

Wills Eye Institute of Thomas Jefferson University Medical School in Philadelphia on Saturday, July 17, 2010.  Dr. Levin is the Chairman of The Sturge-Weber Foundation Medical Advisory Board and the primary contact of The Sturge-Weber Foundation Center of Excellence at Wills Eye Institute.

The following topics were discussed:

• Sturge-Weber Syndrome and Glaucoma, Dr. Alex Levin
• The Choroidal Hemangioma of Sturge-Weber Syndrome, Dr. Carol Shields
• Update on Seizure Management in Sturge-Weber Syndrome, Dr. Michael Sperling
• Who is Quarterbacking your Child’s Care – an introduction to Medical Home, Dr. Gary Emmett
• Research being conducted and future directions, Karen L. Ball

There was an active Q & A session where parents brought their concerns and questions.

Twenty-eight families attended for a total of 55 adults and 18 children.  The children enjoyed a “Kids Camp” coordinated by college volunteers, Julie Ayers, Penn State and Allie Tabakin, Rutgers University.

Photos of the day

Coming soon – Video Presentation of Education Day  

Jessica Melo is ready to particiate in the CIGNA Falmouth Road Race, a nationally know race run by thousands of people on August 15, 2010. The process to procure sponsorship took several months. But, just recently the Melos received good news. Falmouth had accepted the SWF as one of their official charities and voted to provide the foundation with five race numbers exempt from the lottery for Jessica and four friends. Each runner must commit to raising at least $750 for the Sturge-Weber Foundation. Every penny will go directly to the foundation in hopes that continued fundraising efforts such as this one will eventually raise the amount of funds necessary to back the research that will one day lead to a cure.

Check out the article in the Grafton Times; great article Jessica!

Each participant is raising funds through the SWF firstgiving site.  Check out their fundrasing pages below and help fight for a cure!  Update July 1, 2010:  Jessica and her team of runners won the FirstGiving Early Bird Special and have receviced 2 extra Falmouth Road Race entries!  Congratulations - we are so excited about your great work!  To learn more about the Falmouth Road Race visit http://runners.firstgiving.com.

www.firstgiving.com/kevinmelo

www.firstgiving.com/helencollins

www.firstgiving.com/kristicallaghan

www.firstgiving.com/pammcintyre

www.firstgiving.com/jessicamelo

www.firstgiving.com/elizabethmcmullin  

The Faces of Miracles campaign was launched at the end of 2009 and is our way of raising awareness of Sturge-Weber Syndrome and the vital  support we need to continue our mission.  Faces of Miracles brings awareness through the calendar filled with fourteen miracle stories and pictures.  Calendars tell us what day it is.  The Faces of Miracles calendar tells us every day there are people who need our love and support.   Now it's time to begin thinking of creating our 2011 Faces of Miracles Calendar.  Would you like to be featured in the calendar?  The 2011 calendar will feature 13 calendar stories, one for each month and one for the "year at a glance page."  The goal of the calendar will be to feature:   3 calendar pages of children newborn to 5 years of age 3 calendar pages of children 6-12  years of age 3 calendar pages of teenagers 13-18 years of age 2 calendar pages of young adults 19-25 years of age 2 calendar pages of adults over 25 years of age   Interested?  Please email your story (no more than 580 words) and photo to Bonnie at This e-mail address is being protected from spambots. You need JavaScript enabled to view it by Friday, September 24, 2011.

 Calendar Stories....

A special thank you is extended to our Faces of Miracles Committee - Jeanie B, Jessica M, Norma S, Brandi S, and Rachel W for helping launch the first annual Faces of Mircales event along with staff support from Bonnie Ayers and Anne Howard and board support from Linda Cohen and Martin Schmieg.  Their ideas and input were invaluable as were the families who raised funds for the SWF. Visit the SWF marketplace  to purchase calendars while the supplies last!  Only $15!