United Survivors with EB

About me:

..What We Do?..

USeb is a nonprofit corporation organized and run primarily by people with EB. Our Mission Statement is to provide services that will assist people with EB in becoming more self-reliant through social, cultural, recreational, rehabilitative, educational and occupational opportunities. We value self-reliance because it inspires individual productivity, builds self-esteem, stimulates human happiness, and heals the dignity of the soul. These benefits particularly enable people with EB to not merely cope, but to rise to a position where they can succeed independently, help others to do the same, and contribute to society in worthwhile ways.

Our first goal is to provide a specialized Camp designed specifically for children and teens with EB and run by adults with EB. Camp can be a huge step in becoming self-reliant by allowing campers to leave home, be away from parents, perhaps for the first time, and experience doing things on their own, while still receiving needed medical care and assistance. Camp will be an educational as well as a fantastically fun experience.

Our second goal is to create a Scholarship Program for people with EB. The need for a scholarship may not necessarily be for college tuition. There are many extra needs a student with EB would have that can create undue expense. Examples might be nursing care or special manual assistance. Daily tasks for a person with EB can be very exhausting and time consuming. With some personal assistance, a person with EB can have more time and energy to dedicate to their education.

Also, a person with EB may not want or be able to attend college but would like to develop a talent or skill that would require specialized training. With the scholarship program we can provide funds for programs such as art lessons, private vocational training, or online courses.

Our third goal is to create a Mentoring Program wherein we will pair up individuals with EB with a professional or expert as a mentor in their field of choice. The mentor will volunteer their time and expertise offering encouragement, positive feedback, and regular correspondence to assist that person with EB in reaching their goals.

Ultimately, our Dream is to build an EB House that will meet a variety of needs. It will be a place for people with EB to come for refuge and assistance. It will act as a halfway house for those transitioning into an independent life. It will be a place where parents of new babies with EB can come and learn from the real experts (those who have EB) who can offer hope and valuable experience and information about how to take care of their new family member.

Our final goal at USeb is to furnish any other necessary assistance that would include, but not be limited to, materials, services, and funds, which will help EB survivors become more self-reliant through social, cultural, recreational, rehabilitative, educational and occupational opportunities.

Thank you for your interest in USeb. Please frequent our site and watch US reach our dreams. We appreciate donations, suggestions and encouragement.

Contact Info:

..President..
Jamie Diane Hartley
epidermolysisbullosa@gmail.com

..Vice President..
Jennifer Innes
jennkinnes@hotmail.com

..Treasurer..
Taylor C. Hartley
taylorhartley@gmail.com

..Secretary..
Vanessa Leinert
vlein934@gmail.com


Jennifer, Jamie, Taylor

..Mailing Address:..
United Survivors with EB
753 E. 1000 N.
Pleasant Grove, UT 84062