EB Community Member, Susan Craighead, to be honored with Spirit Award

In Loving Memory of Susan Craighead (1964-2023)

On Saturday, November 4, 2023, Susan Craighead will be honored with the Spirit Award at the debra of America Annual Benefit at Georgia Aquarium in Atlanta, GA. RSVP here!

The debra of America Spirit Award recipient is a person with Epidermolysis Bullosa (EB) in the United States who possesses great courage and strength in the face of EB. Recipients rise above the daily struggle of living with this rare disease to serve as an example to others in their community and the world at large in understanding EB. 

“I wish my parents were here today to share the honor of the Spirit Award," Susan shares. “Before I knew the meaning of the word, they helped me become independent. They never told me my dreams were inconsistent with the medical literature. On the contrary, they reminded me often of my privilege, and encouraged me to use my gifts to help others. Yes, I have EB, but that never stopped me from serving my community. In fact, it made me a more empathetic servant.” 

Susan was born with DEB inversa in 1964, when no one expected infants with EB to survive. But Susan had something special on her side: parents — both physicians — who refused to give up. They encouraged her independence, letting Susan handle her own dressings from the age of four.  

While schoolwork came naturally to Susan, forming friendships proved to be more challenging. Yet, her parents instilled in her the values of serving her community above self —a lesson that would shape her path in the years to come. 

In her hometown of Burlington, Vermont, Susan blossomed into a community advocate. She was active in local politics, playing a pivotal role in helping the school district pass bond issues. Susan's academic prowess led her to Princeton University, where she graduated magna cum laude, and later to the prestigious halls of Oxford University in England as a Rhodes Scholar. 

Returning to the United States, Susan initially pursued a career in journalism, working as a reporter in Kentucky. However, she soon realized that her advocacy skills could make a greater impact in the field of law, so she went on to attend Harvard Law School. Following her studies, she and her newlywed husband ventured to Seattle, where Susan embarked on a career as a public defender.  

Over the years, Susan’s commitment to her profession saw her ascend to the judiciary. For an impressive 12 years, she served as King County Superior Court Judge, presiding over a county of 2 million people. 

Susan shares, “I know what it is to live with pain. Like the litigants who came before me, I understand how hard it is to navigate life carrying a burden. Epidermolysis Bullosa gave me the gifts of empathy, drive, and resilience. Those qualities helped me serve my community.” 

At the age of 56, Susan's health forced her to step away from the job she loved. Still, she finds happiness in her kitchen and her garden and satisfaction in continuing to parent her adopted adult son, who struggles with his own burdens. 

Susan's remarkable journey, from a fragile infant with EB to a fearless advocate for justice, is an inspiration to debra. Her story reminds us that the human spirit can conquer the most formidable obstacles, and that a life dedicated to serving others is a life truly well-lived. 

debra looks forward to celebrating Susan and her extraordinary achievements at the debra of America Annual Benefit on November 4th!