Logo anniversary  Sturge-Weber Foundation
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Roots to a Cure 25th Anniversary Campaign
25th Anniversary Yearbook
Chase Community Giving - THANK YOU!
2012 Philadelphia Marathon
Thank You!...Thank You!
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October 2012
Roots to a Cure 25th Anniversary Campaign

 

The Sturge-Weber Foundation is 25 years young and we're celebrating with the launch of our Roots To A Cure 25th Anniversary Appeal Campaign.

  

Our journey began in 1987.  My daughter was born with a rare disease know as Sturge-Weber syndrome.  There was little information available and few medical professionals with much knowledge to share.  Since then we have learned a great deal and taken significant steps forward.

  

As our year-long Campaign gets underway we have several goals:

 

  • raise money (of course) to continue to fund research into a cure

  • provide educational resources to families affected by Sturge-Weber, Port Wine birthmarks and related conditions

  • increase awareness about these rare diseases to a larger audience

  • offer a place where individuals and their families can share experiences and stories of hope with each other

    •  

      

    We're going to visit with you periodically throughout the year, but today, there are just a couple of things I'd like you to do:  click here to learn more about the ways you can get involved; make regular stops at our SWF website - read the stories of our champions and get to know us better; share your lives with us.

     

     

    One more request - Partner with us in our Roots to a Cure  25th Anniversary Campaign...we have so much more to do.

     

    In faith, hope, and love,

     

    Karen Ball

    President and CEO

    25th Anniversary Yearbook

    Logo anniversary As we enter our 25th year it is a good time to reflect on special memories and special friends. The Sturge-Weber Foundation story began with one woman's spark which ignited others to carry the torch; establishing a supportive network, facilitating vital research and creating hope for thousands around the world. The Faces of Miracles Anniversary book will include Foundation history, accomplishments and program information along with personal stories and memories from Foundation staff and YOU, our cherished members. 

      

    We are asking for your help to capture all the memories that have made the Foundation a global resource and respected partner. Please share your story in the Anniversary book through one or more of the participation opportunities below:

     

    Stories/Photo

    • Stories and pictures featured in the book will be of an individual with a Port Wine birthmark condition 
    • Photos should be high resolution, jpeg photos
    • Stories should be no more than 580 words but of course, do not need to be this long.

     

    Memoirs:  Click here and tell us how The Sturge-Weber Foundation has been a part of your life with 6 words.

     

     

    Foundation Tributes: Tell us what the Foundation means to you and how it has helped you through your journey. Include your name and a picture.

     

    Pictures:  Events - Did you hold an event, attend an event, educational forum or family day? Please share your pictures and include a caption!   Favorite photo - Do you have a favorite photo? Submit a photo (must include the individual with SWS, KT or PWB but can be entire family/friends, etc.) along with names and date

     

    Items must be submitted to Bonnie at bayers@sturge-weber.org by Friday, August 2, 2013. Of course we would love to have them sooner! Thanks for your help in advance! Books will be available in November 2013. What a great way to raise awareness - the stronger the wind, the tougher the trees...  

    Chase Community Giving - THANK YOU!

     

      

    Chase Community Giving had a technical glitch showing "$10K recipient" on some charity pages erroneously; we were one of them. We got a call from Chase Community Giving on 9/24/2012 and Chase is graciously awarding those charities a Chase grant award. We are so thankful to Chase for awarding the Sturge-Weber Foundation $10,000 - their generosity is truly appreciated!

     

    We did make great strides - TOGETHER! As we kick off the foundation's 25th year, we are so appreciative of your support. 29 votes away were so close and to receive the $10,000 anyway is so generous! A special thank you is extended to Jim Zelasny for nominating the Sturge-Weber Foundation, to everyone who got involved, and to Chase for being so supportive to the non-profit community.

     

    We do have another Chase opportunity around the corner: On Saturday, December 8, 2012 Chase will honor amazing charities, community heroes and award life-changing grants to deserving charities across the country. We should be receiving information on how the Sturge-Weber Foundation can participate over the next 3 weeks. Please check back for updated information on how you can help the Sturge-Weber Foundation become one of these charities!

     

     

    2012 Philadelphia Marathon
      
    The Sturge-Weber Foundation is excited to be one of the 2012 Philadelphia Marathon Charity Partners this year. Thank you to volunteer Susan Arnold for encouraging our participation this year. We look forward to making it a tradition and growing the team in future years. The Philadelphia Marathon partners with many wonderful and worthwhile programs that support local initiatives and benefit people in the Philadelphia region, nationally and around the world.

     

    Race Day is Sunday, November 18, 2012. Thank you to our runners for raising awareness and support for Sturge-Weber Foundation Programs!

     

    Check out their pages and show your support. 

    Thank You!  Thank You!  Thank You!
    We cannot say thank you enough to everyone who had awareness events and/or fundraising events and to everyone who has made generous donations to the SWF.  You generosity of your time, talents and donations never go unnoticed!  Please check out what families have been doing to support programs of the Sturge-Weber Foundation - Click here!
    As a small Foundation of a rare disease, we need to join hands to help raise funds and spread awareness and hope for individuals affected
    byand living with Sturge-Weber syndrome and related port wine birthmark conditions.   So many aspects of these rare conditions are out of our control but our ability to support each other, raise awareness and raise money is within our control if we have the will to do it. 

     

    Please contact the office with ideas, suggestions, things you want to do in your area; we are here to help. Contact Bonnie at
    bayers@sturge-weber.orgor 973-895-4445 x 106.
    What we do today makes their tomorrows even better.