December Town Hall
In our December Town Hall, we were honored to partner with the 501c(3) nonprofit EBLife to have a conversation centered on mobility needs in the EB community. EBLife's mission is to donate lightweight portable mobility aids to the EB community to help them regain their mobility & independence.
Our speakers:
Hodges Caldwell Jr.
Hodges is the founder and CEO of the 501c(3) nonprofit EBLife. Their mission is to donate lightweight portable mobility aids to the EB community to help them regain their mobility & independence. Hodges lives with the Junctional subtype of EB and understands the struggle of mobility first hand. He has been involved in numerous clinical trials and research programs since the age of 4 and was primarily raised at Rockefeller University Hospital in New York under Dr. Martin Carter where he successfully had one of the first skin graft procedures. He was also the 1st to participate in a clinical trial for pusedmonic acid also known as bactroban or the genetic version Mupirocin ointment. Hodges has also participated in clinical trials for Miami University and Stanford University under Dr. Jean Tang.
Katelyn Ward
Katelyn is a graduate of Mount St. Mary’s University where she completed a degree in Health Science of Nursing. She is also a passionate advocate for the EB community. Born with Dominant Dystrophic EB, Katelyn has faced immense challenges, including 28 doctors spanning across 4 states and 41 surgeries in the last 11 years, but she refuses to let the disease define her. Now working at WellSpan Health, Katelyn is actively pursuing her dreams of becoming a pediatric nurse. She also continues to give back to the EB community as EB Lifestyle’s Event Coordinator, helping to amplify the voices of everyone impacted by EB and filling critical gaps with mobility device donations.
Emily Houston
Emily is a 20-year-old living with RDEB and a junior in college majoring in Psychology. Driven by a passion for supporting children and families navigating medical challenges, she hopes to become a Child Life Specialist. Emily is deeply committed to uplifting the EB community and has found meaningful ways to stay engaged, including serving as a representative for Vyjuvek and volunteering each year at Camp Wonder. Through her advocacy, academic pursuits, and volunteer work, she strives to make a lasting impact on the EB community and beyond.
Our speakers:
Hodges Caldwell Jr.
Hodges is the founder and CEO of the 501c(3) nonprofit EBLife. Their mission is to donate lightweight portable mobility aids to the EB community to help them regain their mobility & independence. Hodges lives with the Junctional subtype of EB and understands the struggle of mobility first hand. He has been involved in numerous clinical trials and research programs since the age of 4 and was primarily raised at Rockefeller University Hospital in New York under Dr. Martin Carter where he successfully had one of the first skin graft procedures. He was also the 1st to participate in a clinical trial for pusedmonic acid also known as bactroban or the genetic version Mupirocin ointment. Hodges has also participated in clinical trials for Miami University and Stanford University under Dr. Jean Tang.
Katelyn Ward
Katelyn is a graduate of Mount St. Mary’s University where she completed a degree in Health Science of Nursing. She is also a passionate advocate for the EB community. Born with Dominant Dystrophic EB, Katelyn has faced immense challenges, including 28 doctors spanning across 4 states and 41 surgeries in the last 11 years, but she refuses to let the disease define her. Now working at WellSpan Health, Katelyn is actively pursuing her dreams of becoming a pediatric nurse. She also continues to give back to the EB community as EB Lifestyle’s Event Coordinator, helping to amplify the voices of everyone impacted by EB and filling critical gaps with mobility device donations.
Emily Houston
Emily is a 20-year-old living with RDEB and a junior in college majoring in Psychology. Driven by a passion for supporting children and families navigating medical challenges, she hopes to become a Child Life Specialist. Emily is deeply committed to uplifting the EB community and has found meaningful ways to stay engaged, including serving as a representative for Vyjuvek and volunteering each year at Camp Wonder. Through her advocacy, academic pursuits, and volunteer work, she strives to make a lasting impact on the EB community and beyond.
December Town Hall Summary
Hodges began by walking us through the founding of EBLife, including their mission and progress. He spoke about the impact of founding the organization and shared how meaningful it has been for him to see the tangible difference EBLife has made in the lives of those who have benefited from the mobility aids they provide.
Next, Katelyn shared how she became involved with EBLife. She also spoke about her deep friendship with Hodges and what working at EBLife has meant to her. Katelyn emphasized the importance of person-first care and action, and she shared some of her own struggles and what has been most helpful to her. She highlighted that everyone — with or without mobility challenges — has different needs and preferences, and that simply asking, “What can I do to make your life easier?” is an effective and compassionate way to offer meaningful support.
Lastly, we heard from Emily, who is a recipient of a mobility device from EBLife. She shared how much receiving the device has improved her daily life and great it was to work with Hodges, who works extremely hard with each individual to find the right mobility device for them. Emily also spoke about the emotional challenges she has faced, including feeling trapped and isolated due to her mobility limitations, and the overall mental toll that mobility struggles can cause.
Next, Katelyn shared how she became involved with EBLife. She also spoke about her deep friendship with Hodges and what working at EBLife has meant to her. Katelyn emphasized the importance of person-first care and action, and she shared some of her own struggles and what has been most helpful to her. She highlighted that everyone — with or without mobility challenges — has different needs and preferences, and that simply asking, “What can I do to make your life easier?” is an effective and compassionate way to offer meaningful support.
Lastly, we heard from Emily, who is a recipient of a mobility device from EBLife. She shared how much receiving the device has improved her daily life and great it was to work with Hodges, who works extremely hard with each individual to find the right mobility device for them. Emily also spoke about the emotional challenges she has faced, including feeling trapped and isolated due to her mobility limitations, and the overall mental toll that mobility struggles can cause.
EBRP live Town Halls
Our monthly Live Town Halls help drive research and awareness with informative discussions led by trusted specialists and advocates in the EB space. Topics include current research, clinical trials, caring for loved ones with EB, and more. Town Halls are open to anyone interested in learning more about EB and the future of EB treatment and care. Check out more of our Town Halls here.
To register for our next Live Town Hall, click here.
To register for our next Live Town Hall, click here.
