EB Champions, We Salute You!

We’re ready to strike up the band and let loose with the fireworks during this patriotic month of star-spangled marches and celebrations to honor a trio of EB advocates and who are seeking greater support and attention for EB patients and their families. We consider them EB champions and applaud their independent streak and fierce drive to lead the charge for raising EB awareness.

· Alison Ganson
Following the death of her son Scott last November, Ganson launched a new nonprofit, the Scott Ward Schofield Memorial Fund, with the help of friends and family. The intention, as articulated on the group’s website, is “to make dreams come true” by sending EB patients and their families across the world to “make memories that will last forever.” Ganson has channeled what could be solely a time of grief and sorrow into an opportunity to help other families create treasured memories with their children, and we think that’s courageous. As she shares background about her son Scott, Ganson notes at her website, “The photographs I have and the memorials of all those special times help me get through every day. I want others to have the same opportunities as Scott … I want their families to have what I have, treasured memories of a special child.” For more information about the fund or to donate, please visit the organization’s website or call the Manchester, England-based group at 0792-087-5564.

  • Miss Walking Tall 2011 Sarah Stonier
    We were thrilled when we learned that a pageant participant from Knoxville had selected as her platform for the Miss Tennessee competition—a preliminary pageant leading up to Miss America—the goal of raising awareness and research dollars for epidermolysis bullosa. Though she may not have landed the state or national crown, as the reigning Miss Walking Tall 2011 of her homestate, Sarah Stonier continues to spread the word about EB by leading the charge and initiating conversations about what she has termed EMBRACE (Epidermolysis Bullosa Research, Awareness, Cure and Education). We’ll have more on Stonier soon in an upcoming blog Q&A with the dedicated young woman. In the meantime, you can follow the reigning Miss Walking Tall at her Facebook page by clicking here.
  • Alex, Jamie and Jackson Silver
    After learning of an EB diagnosis for their son Jackson upon his birth in October 2007, Alex and Jamie Silver were faced with the same challenges as other families—what to do next to raise a child with epidermolysis bullosa. But this determined young couple took these challenges that lay ahead and embarked on a personal mission, launching the Jackson Gabriel Silver Foundation in honor of their son (now, over three and half years old) in an effort to, as they put it on their own website, “support the brilliant research focused on finding a cure for EB that will give Jackson, and other children afflicted with EB, a chance.” We tip our hat to the Silvers for seeing more than a hard road ahead but instead seeing a path they can help clear for others to come by focusing energy and attention on raising clinical research funds. For more information about how to get involved or donate to the fund, email info@jgsf.org.

Sources:

Scott Ward Schofield Memorial Fund

Miss Walking Tall, Sarah Stonier, Facebook

Jackson Gabriel Silver Foundation

Related Posts:

Celebrating Moms Making a Difference

We Appreciate These EB Champions

We Heart These EB Champions

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