Meet Our Volunteer Team
We Would Like To Share A Little About Us Because Anyone In The E.B. Community Is Family. So Why Not Share Something About Us To Make You Guys Feel Like Family The Way We Feel About The E.B. Community.
HODGES R. CALDWELL JR.
Hello I am Hodges R. Caldwell, Jr. founder of EBLifeStyle.org
I have been involved in the EB community since I was 9 months old. (I have Junctional Severe Epidermolysis Bullosa) I attended the first Debra Conference, and have participated in several clinical trials. My first clinical trial was for the FDA approval of Bactroban which is used by many people today. I found EBLIFESTYLE, because I wanted to change the way people see Epidermolysis Bullosa. Therefore, our slogan is: It’s Not a Choice, It’s a LifeStyle. Emphasizing that we had no choice of being born with EB, but we are still people trying to live the best life possible, despite having this severe medical condition.
Hobbies: Movie Buff Foodie, love going out to eat.
Goals: To have EBLifeStyle known as one of the most recognizable E.B. organizations worldwide.
Favorite Foods: Chicken, Pizza, Spaghetti, Turkey
Favorite Movies: Star Wars. Dragon the Bruce Lee Story, Saga of IP Man, Avatar, Friends with Benefits.
Favorite TV: “The office”, Star Trek (Enterprise & Voyage), That 70’s shows, and Cobra Kai
Favorite Quote: But He Said To Me”: My Undeserved kindness is sufficient for you, for my power is made perfect in weakness. Most gladly, then, I will boast about my weaknesses.- 2nd Corinthians: 12:9
Personal Link: Hodges E.B. Journey
I grew up with 3 cousins with EB and now work in EB research. Currently working at Stanford University as a Clinical Research Coordinator
Hobbies: cooking, reading, cycling, binge-watching
Goals: Buying a house
Dream: travel the world with my family
Favorite Food: Chile relleno
Favorite Movie: Boy
Favorite TV Show: The Office
Favorite Quote: “Optimism is a strategy for making a better future. Because unless you believe that the future can be better, you are unlikely to step up and take responsibility for making it so” - Noam Chomsky
Heyyy everyone my name is Sarah R. Groome, I am a public notary, an elementary school teacher/tutor a devoted wife and dedicated mother of 3 boys! I am a VSU English Major Grad, who loves Jehovah God and Jesus Christ. Virginia Beach is where I reside I'm definitely a Beach Girl!
Hobbies: I enjoy taking care of my 3 boys and living it up with my hubby!
Dreams: Creating an invention that can change the world for the better and have a successful life with my family!
Favorite Foods: Shrimp & Mushroom pasta (alfredo)
Favorite Tv Shows: Power (HBO), Abbott Elementary, and The Fosters.Favorite
Quote: Everything happens for a reason!
My name is Kristen. I am 26 years old from Virginia Beach, VA.
Hobbies: Going to the Gym / Running
Favorite Foods: Spaghetti
Favorite Tv Shows: Girlfriends, Grace and Frankie
Dreams: To reach my highest potential, in all aspects of my Life
Favorite Quote: Psalms: 23
Hi my name is Hayley winder, I’m 22 almost 23 from Philadelphia PA. I have RDEB. I am a single mother of a healthy 2 year old son.
Hobbies: Music, makeup, and sleeping.
Dreams: to be the best mother I can be to my son, and show him that it doesn’t matter that mommy has a disability.
Favorite Foods: Mac and cheese, crabs, Chinese food.
Favorite Tv Shoes: the good doctor, Chicago fire, Chicago med, criminal minds, Wentworth.
Favorite Quote: “my scars tell a story, of when life tried to break me but failed”
I live with dystrophic Epidermolysis Bullosa (EB). I was born and raised in Canada but my nationality is Palestinian. I am the model of eb life style and I’m honestly grateful to be apart of this company. I speak 2 languages, Arabic and English. Whenever life knocks me down I try my best to get back up because life goes on and giving up should not be an option.
Hobbies/interest: I love to draw sketches of celebrities, people, nature and so on because it relaxes me. Makeup is one of the most things I love to do because it get my creative side out and shows people that even with my skin disorder/disability nothing is impossible when you’re passionate for it.
Dreams: My dreams are big, but hoping to have a stable job and travel, take care of my parents, buy a nice apartment, maybe get married. I also dream of having a business as a makeup artist.
Favourite Foods: middle Eastern food all the way, I also love sushi, I love Italiano food like lasagna, spaghetti, pizza. I love dessert too like cheesecake, cupcakes,
Favourite TV show: I’ve always loved FRIENDS. I love to also watch Turkish series because of the drama, romance and comedy.
Favourite quote: Why fit in when you were born to stand out.
I’m Ariana, I am 22 from Los Angeles. I am a disability advocate, model and content creator aiming to expand the conversation in regards to EB and other taboo topics. I have a Bachelors Degree in communications and I am a proud dog mom.
Hobbies/interest: music, concerts, amusement parks, makeup and anything that allows me to express myself and who I am.Dreams: educate as many people as I can about EB
Favorite Food: Pizza
Favorite TV Shows: 90 day fiancé
Favorite Quote: Expect the unexpected.
Personal Link: https://dazzleari6.wixsite.com/mysite
I’m an indie artist based in Nashville. I was born and raised in Tampa, Fl. Ihave 3 super cute fluffy children that are my whole world. i'm obsessed with the rain, space, & anything holographic.
Hobbies/interest: singing/songwriting, concerts/shows, painting, DIY crafts, thrifting, traveling, spirituality, collecting pretty rocks, trying not to kill my plants
Dreams: To tour & share my music all over the world while inspiring the younger generation to never give up on your dreams despite if the odds are against you. you can do anything that you put your mind to
Favorite Food: Pho
chocolate milk, breakfast foods
Favorite TV Shows:
avatar, ground control to psycho electric, girls Colby, Nashville law & order SVU, love is blind
Anything you can imagine is real” - Picasso“the mind is everything.
To love; that is our purpose”- Sammm
Personal Link: https://linktr.ee/holographicspacefreak