About the EB Hope Foundation
It all started with a walk … in the spring of 2008, family and friends came together for the first annual Walk for EB (epidermolysis bullosa) to support a little boy with EB named Carson. Our goal was simply to spread awareness about this widely unheard of skin disease and possibly raise a few dollars to help with efforts to find a cure. Little did we know that what started as a simple walk would blossom to a non-profit organization committed to providing a path of hope for the EB community.
In 2015, the EB Hope Foundation was established as a 501c3 tax-exempt, charitable organization as recognized by the IRS. Our mission involves spreading EB awareness, supporting EB organizations and families, and raising funds for research.
The primary initiative put on by the foundation is the annual Walk for EB, which typically takes place in early May in Cincinnati.
Meet Our Board
- President: Jonathan Kissell
- Vice President: Alex Long
- Treasurer: Tony Hautman
- Secretary: Renee Bernecker
We believe awareness about epidermolysis bullosa (EB) will change lives … awareness extends the path of people who can support efforts to help EB families and fund research needed for a cure. At the same time, awareness can also have a positive impact on the world around us by sharing the powerful stories of those living with EB.
Most of our stories come from our organization’s inspirations, Carson and Kolbe, sons of David and Kristy Kissell. Despite all that they endure, Carson and Kolbe walk their EB journey with great courage and a joyful spirit. Just as we work to bring hope to those living with EB, we must always remember how much hope and inspiration those living with EB bring us. As a post on the EB Info World stated, “someone with EB has taught me that I am stronger than I ever thought I was or could be.”
We raise EB a
wareness and financial support for research efforts and organizations that support EB patients and their families. Our primary initiative is the annual Walk for EB, which takes place in Cincinnati in early May.
In 2019 and 2020, the EB Hope Foundation contributed more than $100,000 to four amazing EB organizations:
- EB Center at Cincinnati Children’s Hospital
- dEBra (Dystrophic Epidermolysis Bullosa Research Association of America)
- EBMRF (Epidermolysis Bullosa Medical Research Foundation)
- EB Research Partnership
These donations were made possible thanks to the generosity of so many people and corporate partners. Thank you!!!
1) Attend the Walk for EB!
Rain, shine, or virtual … we welcome all to participate in the annual Walk for EB, typically held in May around Mother’s Day. Your presence at this special event each year means so much to families touched by EB and all those working to find a cure for EB.
2) Partner with the EB Hope Foundation and help raise funds for the cause.
Invite friends and family to make a donation and/or encourage organizations you are involved with to designate charitable funds to the EB Hope Foundation (example: a local high school rallied the student body to raise funds for the Walk for EB). If you would like help or have an idea for establishing any type of partnership, send an email to walkforEB@gmail.com.
3) Invite a representative from the EB Hope Foundation as a guest speaker at functions or organizations you are involved with, such as community organizations, churches, schools, etc.
EB is an extremely rare disease and awareness is a key step along the path to finding a cure.
We are always looking for opportunities to educate about EB, and welcome the opportunity to speak to your group or organization. Some previous speaking engagements have included: corporate meetings, church retreats and events, school PTO meetings, Business Exchange Club meeting, high school alumni event, non-profit association meeting and classroom presentations.
For more information or for questions about becoming involved with the EB Hope Foundation or the Walk for EB, send an e-mail to walkforEB@gmail.com.