Meet Advocates for Epidermolysis Bullosa

Christie BChristie Zink

Christie is a passionate advocate for EB awareness, EB family support, and for the research being conducted near her Minnesota home at the University of Minnesota by Dr. Jakub Tolar.

Christie became involved in EB advocacy after discovering Courtney Roth’s blog about her son Tripp about two years ago and not long after that, she began coordinating events as far away from her home as Louisiana to promote EB Awareness. See More

 

 

427785_4167900510412_784272834_n (1) CropMelinda Warner

Melinda became very passionate about advocating for those affected by EB when she learned of Tripp Roth’s passing after battling Junctional Epidermolysis Bullosa.    Melinda’s compassion consistently drives her to help make a difference any way that she can.   Melinda is active on a variety of levels, including supporting families, promoting awareness and supporting vital research.  See More

 

 

 

 544725_3515100109181_2064582826_n (1)Sharee Wells

Living in the small town of Ponchatoula, it was nearly impossible to not be affected by the life of Tripp Roth.  Sharee became actively involved in her community supporting Tripp and his mother Courtney.  This soon became more of a passion for Sharee and her advocacy spread to other families who were faced with the challenges of EB.  She wanted to do more and  became very involved in raising awareness and supporting research.  Sharee’s passion and compassion are truly inspiring. See More

Laurie SternerLaurie Sterner

Laurie’s passion and compassion are truly inspiring.  She is dedicated to support those who suffer, she is their voice, their comfort. ” Everyday, we as people have struggles and hardships. But everyday, I think about another family, who is living a life with TRUE struggles…the kind of struggles most of us cannot even begin to imagine.  I cannot fathom the sight of seeing my child in pain, fighting for his or her own precious life and experience the unspeakable pain of losing my child to some horrific disease or catastrophic event. THIS is the reason for The Butterfly Fund” See More

Aubrey's 5k (109)Kim Rosenbaum

Kim, not unlike many, came to know of EB through reading about Tripp Roth.  Astounded and moved by the tremendous suffering that this child endured, Kim made a conscious effort to do something. After researching, Kim found avenues in which she could help make a difference.  She has become part of a very dedicated network of advocates and her compassion drives her to do whatever she can.  See More


121Kerri Spinazola, Melina’s Mommy

Kerri is a fierce advocate for EB, despite dealing with the day to day challenges and how it affects her life.  Kerri’s daughter, Melina was born with EB Simplex Dowling Meara, a diagnosis that rocked Kerri and her family.  It was however this same diagnosis that drives Kerri’s passion and dedication to raising awareness and supporting research that was vital for a cure.  See More

546254_10150780234386862_541778157_nAndrea Ness

Andrea’s life took a drastic turn when the daughter of her good friends was born with Junctional Epidermolysis Bullosa.  In the six short weeks of Aubrey Joy Oberlin’s life, Andrea was affected deeply.  As she researched this devastating disorder and came upon other stories, she felt a call to action, a call to be a voice and to make a difference.  Andrea’s passion and dedication are truly something to be admired.  See More

 

907762_10151542098279687_1105925785_nAmy Spinelli

Amy has become very passionate about helping to raise awareness and supporting advocacy.  Her daughter Ayla was diagnosed with EB Simplex and inspires her to be on this path and to give of herself to help a community of children and adults who are suffering.  See More

SooAnn Roberts Pisano – Coming Soon

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