United Survivors with Epidermolysis Bullosa www.ebsurvivors.org
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HAPPY NEW YEAR! As another year comes upon us we at USeb would like to thank all of our donors who have helped in making our dream and vision a reality. Without you we would never have achieved our first goal, USeb Summer Camp 2009. This camp was designed specifically for children and teens with all forms of EB and run by those with EB. Camp is often the first step a child or young adult with EB has at selfreliance and achieving independence. We gathered for one week of fun and laughter at the National Ability Center in Park City, Utah. Following Camp
our amazing leaders, Jamie and Taylor Hartley, hosted Wings for Us at the Covey Center in November of 2009, where many gathered for an evening of music and entertainment in an effort to raise money in support of USeb. This year we were also able to sponsor an essay writing contest for young adults and adults with EB to express them selves and share their lives living with EB. These amazing essays are featured on our website. This contest was just a jumping off point to our vision of creating a full scholarship program; this pro-
gram is not necessarily aimed towards tuition but the daily assistance those with EB need to obtain an education and independence. The types of assistance can range from having a nurse, special assistance devices such as a mobility scooter or a wheelchair. We were lucky enough to aide one couple living with EB this year to attend school and better support them selves financially in the future. None of these amazing accomplishments would have been a possibility without the help of YOU, our amazing and supportive family, friends, associates and
Wings For Us: Our 2nd Annual Fall Fundraiser USeb hosted a spectacular starstudded fundraising event on November 7, 2009 at the beautiful Covey Center for the Arts in Provo, Utah. The evening began with a fantastic silent auction with over 100 donated items! Artwork produced by children at our first annual summer camp, generously framed by Season's Gallery in Alpine Utah , was available for auction. We were also blessed with donated prints from renowned artist Carol Lee, Sigma Makeup makeup supplies, and 16 tickets to the Hale Center Theatre in Orem, Utah. The audience had the opportunity to watch an inspiring video about USeb, our
mission, and why we feel our work is so needed. Guests also enjoyed incredible performances by April Meservy, Rob Cox, Corbin Allred, the One Voice Children‟s Choir, and our very own Jamie Hartley! Special thanks to all of our performers for lending us their remarkable talents, your support means the world to us! The One Voice Children‟s Choir was a wonderful partner and we are honored by their desire to volunteer with us this summer at camp! We all felt that the night was a huge success and an amazing opportunity to spread awareness about EB! Thank you to all those that made the night possible!
grand donators. Every penny we received was put towards bettering the future of so many EB survivors. We may be small but we are growing strong with your help, and hope to make the following year an even bigger success. We look forward to USeb Summer Camp 2010, expanding our scholarship programs and growing our support network to help those with EB wanting to achieve independence for the future. Many Blessings! Jennifer Innes Vice President
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“I have a chance to have the independence I have always wanted. But, will my EB let me live that dream? Being independent to me means helping my kids not let EB hold them back. Letting them attempt anything their heart desires and live a full fun life. A life of not feeling unable to do and not feeling different than their friends.”– Sandy Snell, 43 yrs old, Mother of Children with EB
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USeb 1st annual Essay Writing Contest Contestants living with EB were asked to contribute an essay in which they expressed their feelings on one of the following Questions: What does having personal independence mean to me? OR If my EB went away today, ten years from now I would be…? We received some amazing pieces of writing but could only choose two winners.
“My mom and dad raised me to be independent as much as I can. They wanted me to try to do things and I am grateful that they did. Until the age of two I was carried around everywhere, I couldn‟t crawl because it would hurt my knees. So at the age of two I was sitting in a room by myself while my mom and dad were in their bedroom. Out of nowhere I get up and just start walking and I walk into my parent‟s bedroom. That is how long I have been trying to be independent.”Kyle Hicks, 17 yrs old
Chastity McNiel, was awarded a brand new Dell laptop for her contribution, and Lizie Fernandez, who was awarded a new digital camera. Congratulation Ladies! Please visit our website at www.ebsurvivors.org/ essays.html to read these amazing stories. And look out for next years contest!
“I personally don‟t think that EB is part of me. My body has it, it has aged me, and it has given me more life experience than other thirteen year old girls. But I don‟t think EB is a part of me, because I„m inside my body and on the inside I don„t have it.” -Lizie Fernandez, 13 yrs old
USeb Scholarship Recipients: Justin & Monique Roeder Through the generous support of its donors, USeb proudly presented Justin and Monique Roeder with the opportunity to better their future and become more independent. Monique is a bold and beautiful survivor of EB and Justin is her dedicated and loving husband. USeb discovered that in addition to facing all the normal challenges of a newly-wed couple they were struggling daily to care for Monique‟s skin and to support them-
selves. Justin was under incredible pressure to produce an income, maintain the vital health benefits for Monique‟s well-being, and be home to care for his wife. USeb granted Justin a much needed scholarship that has allowed him to enroll in a Radiology program online. This scholarship is allowing him to expand his knowledge and employment opportunities and enabling his family to feel hope for a brighter future. Both Monique and Justin
attended our first summer camp and served as a beautiful example of the possibilities of a beautiful caring relationship in the life of a survivor. They continue to face hardships such as adequate medical care for Monique, but we trust that their incredible determination and the benefits of this scholarship will be a success!
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First Annual EB Survivors Camp is a Triumph!
By: Vanessa Eberly USeb proudly and successfully held our first annual EB survivors Camp in Park City, Utah at the National Ability Center (N.A.C.) from August 9th through August 15th 2009. EB survivors Camp is a place for people to connect with one another, young and old, and share a week of fun without fear or judgment. For many, camp was their first experience away from home and family members. The week stretched their skills of selfreliance and promoted their independence in a safe environment. Our wonderful medical staff, led by Dr. Melanie Austin, provided compassionate and holistic care which allowed the entire community to participate in all activities. What sets our special camp apart from the rest? EB Survivors camp is held by people with EB for people with EB. We have a deeper understanding of our campers‟ specific needs and wants. USeb knew the National Ability Center (NAC) was the perfect setting for our new program from the start! Their motto, "If I can do this, I can do anything". They strive to find alternative ways to enable others in doing anything they put their mind to. We believe the NAC parallels our organizational goal to help people living with EB to become self-reliant. We were blessed to have over 30 volunteers at camp that helped with
all the food preparations, cleaning, and activity set ups. National Rehab also donated some of their time, EB supplies, and paid for a catered dinner. National rehab also sponsored our last evening together hosting live entertainment and comedy improve by Comedy Sportz USeb took a unique approach to the camp dynamic by developing more of a community experience where we support one another without labels such as “camper” or “counselor”. In this way everyone felt free to contribute and we all learned from each other. At camp we had many fun activities for all age groups to enjoy. One night we had the opportunity to attend an outdoor performance of “The Fantasticks” at the Sun Dance Summer Theater. We also enjoyed typical camp activities such as horseback riding and arts and crafts. We also took a trip to a nearby lake where some participated in fishing, while others participated in canoeing. A magic show put on for us by a close friend and camp volunteer Chris Matthai, who is a co-founder of EB Friends. One of the week‟s highlights was the Talent Show, where EB survivors were able to share their gifts and interests with the entire community. The rock wall was one of the most popular activities, where every EB survivor and staff member either climbed or cheered on others on as they conquered the 32 foot rock wall. The NAC facilities were perfectly equipped for our needs and their staff took exceptional measures to ensure the safety of everyone. The creative thinking of their staff helped climbers avoid trauma to the skin by using plenty of padding and an adaptable seated harness. The staff also stayed several hours longer than the allotted time to ensure that everyone was given this unique and empowering
opportunity. It was so great to see everyone who stayed to support one another, whether it was to witness their conquest or provide encouragement. The camp experience is so vital because it creates life long friendships and support systems between EB Survivors. Camp challenges and enhances who we are by allowing us to be more empowered, confident, independent, and self reliant. Camp is a new community, a new family, a new home to escape to every year. What a triumphant and remarkable start for our EB Survivors camp! We can‟t wait for next year!
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Personal Camp Story 1: Rock Wall Climbing “I would have to say that my highlight for that week was climbing up the rock wall. When I got down I was so exhausted, but thrilled at the same time. I knew I blistered my hands but as I kept going I honestly felt no pain because I was so determined to finish what I started. At first I wanted to do this to prove to everyone that even though my hands are webbed I could still do it, but when it came down to it I did this to prove to myself that if I believe I can do something I‟ll be able to be successful!”
Personal Camp Story 2: Talent Show “In the talent show at the end of the week I shared my drumming skills. Being able to play the drums has made me become more self reliant, because it is something I can use to exspress my feelings and emotions. It has allowed me to develop my creativity and knowledge. Without hands and fingers to hold the drum sticks I had to be creative and design a way to attach the sticks to play. I see it this way; I may not have the main body parts needed to play the drums. But I do have the brains; I just had to work around a few obstacles.”
United Survivors with EB 512 Hillside Circle Alpine, UT 84004 Chairman Jamie Diane Hartley epidermolysisbullosa@gmail.com Co-Chairman Jennifer Innes jennkinnes@hotmail.com Secretary Vanessa Leinert vlein934@gmail.com
“EB has taken so many things from me, but it has NOT taken my independence. I am a fighter.� Lori Lee Ryan, 53 yrs old
Fundraising Spotlight! USeb would like to recognize all the individuals who have worked tirelessly to raise funds for our programs over the past year! It is through your efforts we find hope and inspiration for the future of USeb. We would like to recognize three members of the board for their outstanding fundraising: Jennifer Innes, Novelette Munroe, and Vanessa Eberly! They have engaged in letter-writing to friends and family, hosted events at local restaurants, and even participated in a charity shopping event at Macyâ€&#x;s! When you live with EB or take care of family members with this disease it may seem like there is little time left in the day for anything-much less fundraising! However, we hope the example of our board members, all of whom live with EB daily, taking simple steps in their own community made such a difference! We will be putting together a step-by-step fundraising kit in the near future to help
you raise funds in no time at all! You can be a part of our mission and aid us in increasing the independenc of survivors everywhere.
Pie in the Sky: Spring 2009 Fundraiser On March 14, 2009 USeb held its very successful First Annual Pie in the Sky fundraiser in Pleasant Grove, Utah! Participants brought their delicious homemade pies that were then auctioned off to support our programs! We saw an amazing turnout and shared a wonderful day of friends, fun, and activities together. There was something for everyone with a hilarious pie-throwing event, a kite decorating contest with prizes, and kite-flying! It was a wonderful way to spread awareness about this disease and our organization and join together to support the mission of USeb!