The Kids are the Stars at the First Annual Camp VIP

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1 Fall 2012 The mission of the SBA of AL is to promote the prevention of Spina Bifida and to enhance the lives of all affected. The Kids are the Stars at the First Annual Camp VIP Words do not describe what an incredible experience our first Camp VIP was for both our attending families and all SBA of AL staff and volunteers who were involved. We couldn t have picked a better name for this camp, because we were certainly surrounded by some amazing kids and families during our Labor Day Weekend camp. The weekend was packed full of both educational and fun activities that helped each child gain Victory, Independence, and Possibilities to help better their future. The weekend began with each family driving up to have volunteers open their car doors and assist them with their first walk or roll down the red carpet. After each family registered, paparazzi waited to take the individual family photos. Our VIP families then settled into their cabins while enjoying a popcorn bucket full of gifts and goodies to help make their cabin stay more fun and comfortable. After dinner, parents were educated on wound care and prevention during a presentation given by Cheryl Hutton, a nurse from National Rehab who not only volunteered her time and expertise, but who also traveled from South Carolina to provide our families with vital wound care information. During the parents absence, our Camp VIP kids and their siblings were treated to a special night of their own. Girls attended Diva Night getting primped with hair styles, pedicures, manicures, makeup, and a basket full of Diva items to take home. They ended their night with their very own walk down the runway. The boys had a blast building and painting their own Upcoming Events October is Spina Bifida Awareness Month. Take this time to educate others about Spina Bifida and its prevention! 6th Annual Gadsden Bowl-a-thon October 20th Paradise Lanes, Rainbow City 1-3 p.m. (12:30 registration) Annual Christmas Party December 2nd 2-4 p.m. Vestavia Lodge Contact Jamie Martin for more information at (jamie.martin557@gmail.com) RSVP by November 16th SBA of AL Info@sbaofal.org Continued next page

2 wooden cars while dressed in their Home Depot gear. They were so excited to then have car races against one another and be able to take home a big bucket of tools and other gifts. There is no doubt that all the kids slept sound Friday night after all of the fun! Saturday started a jam-packed day full of activities. Each family was given the opportunity to have Margaret Rice, a Children s Hospital urology nurse, visit their cabin for a one-on-one catheterization teaching session. We were so blessed to have Margaret share her catherization knowledge, and several children were able to self-catheterize for the first time during camp weekend, thanks to her. Camp attendees were also able to enjoy water skiing for the first time thanks to Joe Ray and Adaptive Aquatics out of Birmingham. To see the sheer joy on the children s faces as they experienced skiing for the first time was priceless! Local fisherman were so kind to volunteer to bring their boats and take our families fishing and for boat rides. Steven Horne used his boat to thrill the kids with tube rides. There were many other camp activities to enjoy such as canoeing, pool and lake swimming, and a water trampoline, but Saturday night most definitely ended on a high note with the family pool party. Children and adults, alike, enjoyed swimming, going down the water slide, eating fresh popcorn from the popcorn machine, and filling huge bags with candy from the very popular candy bar. The most invaluable part of camp weekend was the connections that were made between families. It was extraordinary to see families share personal stories and contact information so they could be sure to stay in touch. We were all sad to see camp come to a close Sunday, but it couldn t have ended any more special than by watching each attending child receive a gold medal to celebrate their camp accomplishments. We couldn t have provided this opportunity without the help of our sponsor, National Rehab, so we want to thank them for their generosity! We also want to thank Prospect Baptist Church for making a camp donation. Last but certainly not least, we want to thank all of our camp volunteers, who selflessly spent their Labor Day weekend making sure that all of our families felt like the superstars they are. You not only served them, but you also went the extra mile to form lasting relationships. All of us at the SBA of AL, the attending families, and camp volunteers have not stopped talking about the overwhelming impact that camp had on all of our lives. We can t wait for next year s Camp VIP Take Two! Camp VIP 2012

3 Thank you, National Rehab, for being our First Annual Camp VIP sponsors! There are more than 200 amazing camp photos, so please visit our Facebook page to view them all! Information on Camp VIP Take Two will be available next Spring. Watch for blasts, newsletter announcements, and Facebook posts.

4 Make a Difference, with a few minutes of your time- The Spina Bifida Genetics Research Project has extended our study deadline to October 31st. The study is to determine if genetic variations in folic acid metabolism account for an increased risk of having a child affected by Spina Bifida. From the results of the study, it may be possible to develop a test that can identify women who may not be adequately protected by standard prenatal vitamins, but who might benefit from high dose folic acid therapy prior to conception. We are seeking mothers who have had children with Spina Bifida, and who did not participate in the first phase of this study, which was conducted in We are also enrolling mothers of children who have not had children affected by Spina Bifida to serve as controls for the analysis. Participants in the study are asked to complete a brief online survey and provide a DNA sample using a simple, at-home saliva collection kit that is delivered and returned by mail. For more information and to enroll in the Spina Bifida Genetics Research Project, please go to the website at and select ENROLL. The website and survey are available in both English and Spanish. Upon completion, participants may choose to receive a $10 gift card or we will donate $10 to a Spina Bifida organization of your choice. The Spina Bifida Genetics Research Project includes scientists from UC Berkeley, Stanford University, UC San Francisco, Children's Hospital Oakland Research Institute and VitaPath Genetics Horne Family Golf Tournament Take some of the most fun and laid back golfers, the amazing Horne family and all of the friends, two of the cutest kids on the planet, and what do you get? - The Horne Family Golf Tournament, that s what! What a great tournament we had this year! The event was held at the beautiful FarmLinks Golf Club on August 5th, and we couldn t have asked for a better turnout or a more perfect day. We are so grateful to the entire Horne family, and the rest of the golf committee which included the Swindle family, Wick family, Patrick family, Hyde family, Ana Gilleylan, and Haley Vance. Each year this event becomes bigger, raises more awareness, and is more Seth and Heath Horne successful, thanks to dedicated volunteers. We also want to thank the 125 golfers that came out to support our organization and those affected by Spina Bifida in our state and to the sponsors who helped us to reach the $21,700 in funds raised! Also, we have been blessed for the last two years to receive a grant from the Pursell Institute to help with the costs of this tournament. We want to thank the Fairly family, who oversee this grant, for this wonderful gift. The incredible generosity shown throughout the tournament has helped us and will continue to help us better support Alabama families affected by Spina Bifida. We also want to take a moment to say a very special thanks to Steven Horne who spends countless hours every year planning and working to ensure this tournament s success. He and his wife first started this event in the hopes of supporting families the way that they and their two boys, both affected by Spina Bifida, had been supported. It is not just a fund-raising event to them but also an opportunity to reach out and connect with other families. They truly have a heart for those affected by this birth defect. We are extremely grateful for their service to our families. Details on the 2013 tournament will soon be available, so stay tuned. Please experience the day through the wonderful pictures taken by our photographer, the talented Brandon Swindle.

5 Presented by Precision Coil Seko Worldwide Southern Company Biotech Limb and Brace Vineyard Brands Trish Acton and Paul Hopkins in honor Sunshine Supplies of Reagan Bush Buckelew Family Hyde Family/Biggs Family Coosa Pines Credit Union Coca Cola Wick Family in honor of Tucker Wick

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7 SBA of AL Membership Form There is no fee to join. Your name: Address: City: County: State: Zip: Phone: (Day) - - (Evening) - - (Cell) Name of person with Spina Bifida and date of birth: / / Person with SB is (circle) Male / Female Please check all items that best describe you. Parent of a child w/sb Adult with SB Family member with SB (not parent) Friend/Supporter Medical Professional Other I am: White Black Asian Hispanic Other Send a copy of this to: SBA of AL P.O. Box Birmingham, AL Donations are welcomed! You can also join by visiting and clicking Join now I/We am/are willing to be included in the directory I/We am/are willing to be contacted as a source of support to individuals/families affected by Spina Bifida.

8 P.O. Box Birmingham, AL Phone: Website: RETURN SERVICE REQUESTED Come enjoy food, fun, music, presents, and a visit from Santa! Be sure not to miss out on one of our most exciting events of the year. For more information contact Jamie Martin at (jamie.martin557@gmail.com) RSVP by November 16th. Annual Christmas Party December 2nd 2-4 p.m. Vestavia Lodge