Kudos to These EB Champions

As you already know, one of the greatest challenges for the EB community is getting the word out about epidermolysis bullosa, so when well-known celebrities or a group of people committed to the cause step in to make something happen, we think it’s a beautiful thing. Here is a great trio that has done just that.

  • Patti Hansen
    Remember ’70s supermodel and wife to Rolling Stones rock legend Keith Richards? We were so excited to hear that Patti Hansen’s recently unveiled talent of making designer handbags for Hung on U was attracting Hollywood attention. But we were ecstatic to learn she was using all of the buzz to partner with EBMRF to raise funds for EB medical research by donating 15 celebrity-customized Hung on U bags for an online auction hosted by Charity Buzz. We say that embracing your style and fashion while supporting a great cause is a win-win. Thank you, Patti!
  • The Butterfly Fund
    This organization, led by founder and executive director Laurie Sterner, initially began with the purpose of raising awareness about EB and the need for support for those who suffer from the disease. Since then, the organization has grown to include support for children diagnosed with any serious life-altering disease or condition. For all Butterfly Fund events, all proceeds go directly to those families being supported, with no paid employees among the group’s team of supporters and volunteers. With food, housing, clothing, care or financial assistance, EB families are helped directly through The Butterfly Fund. This December, the group hosts its invitation-only gala, the 3rd Annual Butterfly Ball in Sonoma, CA. (For details, visit www.sonomabutterflyball.com.) We applaud The Butterfly Fund for all that it does to continue raising awareness and funding for EB families.
  • Delta Tau Delta Fraternity at Southeastern Louisiana University
    When we learned in late September about a fraternity chapter in Louisiana that had embraced the cause of EB Awareness as one of its missions, we knew we had EB champions in our midst! Fraternity president Brandon Colletti and his brother members of the Delta Tau Delta Fraternity of Southeastern Louisiana University launched a fierce campaign to raise funds and public support for the Roth family of Ponchatoula, LA, and specifically two-year-old Tripp, who has EB. Once the fraternity brothers learned of the expensive day-to-day costs for EB families, they set out to promote their popular fundraisers, known as Delts-do-a-Thousand, with not one, but two campaigns to raise support for Tripp and his family. The group led a three-day fundraiser by shaking cans and riding an exercise bike to collect spare change—in the spirit that every little bit of help matters. And we say, yes, it does. Kudos, Delta Tau Delta, for reminding us!

“Patti Hansen’s Hung on U Line Debuts at Barneys New York” (LA Times)
Hung on U
The Butterfly Fund
“Fraternity Helps Child with Rare Disease” (The Lion’s Roar, Southeastern Louisiana University)

Related Posts:
EB Champions, We Salute You!
Celebrating Moms Making a Difference
We Appreciate These EB Champions