Spina Bifida Association of Northwest Ohio Summer 2006 Celebrities With Spina Bifida By: Cassie Mangas Hank Williams, Sr. was born on September 17, 1923. He was born with an undiagnosed case of Spina Bifida occulta. The disease, which caused life-long pain, led him to later abuse alcohol and drugs. He died at age 29. Hank was an American singer, guitarist, and songwriter. He became an icon of country music and one of the most influential musicians of the 20th century. Bruce Payne was born on August 22, 1960. At the age of 14, he was diagnosed with Spina Bifida. At 16, he went through a 2 year situation which required surgery to correct. He was in his hospital bed for 6 months after overcoming the possibility of becoming paralyzed. Bruce is best known as an actor. His movies include: Privates on Parade, Alan Clarke’s Billy the Kid and the Baize Vampire, and Operation Julie. John Mellencamp was born on October 7, 1951 with Spina Bifida that necessitated a lengthy hospitalization as a baby. John is a successful recording artist. His career is highlighted by a string of 1980’s hits including: “Jack and Diane,” “Pink Houses,” and “Small Town.” Mellencamp lives in Monroe County, Indiana and has been married to Elaine Irwin Mellencamp since 1992. He has 5 children from three previous relationships: Michelle, Teddy Jo, Justice, Hud, and Spec Wildhorse. Taking Charge of Your Future: A Financial Guide for People with Spina Bifida and Their Families The National Spina Bifida Association has created a new online publication, Taking Charge of Your Future: A Financial Guide for People with Spina Bifida and Their Families, is now available in a printer friendly format. This is the first financial guide prepared specifically for the Spina Bifida Community. This online publication helps to take some of the mystery out of your financial planning with two sections: 1. Financial Planning Guide for Parents/Caregivers of Children with Spina Bifida 2. Financial Planning Guide for People with Spina Bifida Check out this guide at http://www.sba-resource.org/NEFE/. This is a great resource to use while serving parents and young adults in your community. Back to School It’s back to school time for everyone and we all wish you a wonderful year. The Myelo Clinic wants to remind you to make sure your IEP is up to date and meets the educational needs of your child. Remember that Beth McBurney-White is available to attend IEP meetings or talk with teachers and the school nurse over the phone if misunderstandings occur and it is difficult to get resolution. Latex precautions are always a difficult thing for schools. The 2006 list is attached to the newsletter. National Convention I have received word that next year’s National Conference will be held in Louisville, KY. Since this location is much closer, there is a better chance we can send more people to the conference in June 2007. Ginette Clark and Heather Sting represented our Spina Bifida group at the National Conference this year. She has written the following article regarding her experience. The Spina Bifida conference has been the learning experience of the year for Heather and I!!! We feel very fortunate and thankful for the opportunity to attend the conference. It was held at Atlanta, Georgia June 24th through June 28th, 2006. We both learned many countless things; here are a few that stand out: • • • • • • • • There has been a 26% reduction in the occurrence of Spina Bifida worldwide today. Spina Bifida is registered with the CDC – they help us with awareness concerning latex allergies and standards of care for all clinics. Over $4 mil. has been funded in research toward the causes and prevention of Spina Bifida We have a Spina Bifida caucus on Capital Hill The caucus has enabled the Spina Bifida Association approximately $5 mil. dedicated to research and awareness in the year 2006. We are looking and petitioning Capitol Hill for $6 mil. for next year. On average, eight (8) children are born with Spina Bifida each day in America. The Spina Bifida Associations are only reaching 3,000 of the 70,000 people affected with Spina Bifida nationwide. The conference sessions were also informative. Heather and I went to sessions that were geared mainly toward things that we were interested in. There were a total of 40 sessions during the five days that we were in Atlanta. Each topic ranged from focus on the neurogenic bowel to psychological changes in your child from birth to adolescent. The best part though, was the massive amount of people that attended the conference. I have never seen so many people dedicated to our cause in one place. Heather and I got the chance to meet other parents, medical professionals as well as other children and adults with Spina Bifida. We were able to exchange information and insight into many things that have been tried and failed, or tried and succeeded with our children and within our group. Sometimes we lose sight of the fact that we are not the only ones out there who face physical and developmental opportunities with ourselves and/or our children. We forget that it is important to our children that they belong and not feel alone, especially when they become adolescents. This SBA of NWO Summer 2006 Newsletter -2- conference helped me remember how important it is to stay connected with each other for support and encouragement. Who better to give us that than those who share the same experiences and frustrations? Spina Bifida Camp Recreation Unlimited was the host again this year for our camp. Jenna Kohler told me that a fabulous time was had by all. The dance theme was Mardi Gras. Everyone danced and had a great time. The train went so fast, Cheri could only get blurred pictures. Some pictures did come out well and they are below. Thank you Cassie! Each group made a camp signature canvas poster which was then drawn as a prize within their group at the dance. One very large canvas was signed and decorated by everyone and DJ Huggins won it for being the newest camper who had the most fun. Justin Martin, Cristin Glashauser, Donnie Putinta and DJ Huggins enjoyed the drive in movie. Everyone won at Bingo. New heights were reached on the Tower this year especially by Cristin Glashauser. Matt Lewis, Cassie Mangas, James Maynard, Stephanie Glashauser and Charles Walker had a great time catching about 100 crayfish during creeking. The water fight outside the cabin was refreshing as usual. Anna Baldonado, Abby Avery, Jade Everett, Suzanne Volkman and Gabriella Garcia chilled out in the pool during hot days while Kyle Krohn and Bronson Williams scored big on the water ball net. Nourm Freyer proudly displayed his love of the Browns at the pool. Thanks to Cheri Lee, the camp nurses and all the OTA students from Owens Community College for making camp so much fun. Photos at the Mardi Gras Party at Spina Bifida Camp It looks like “the fashion police” are strutting their stuff. SBA of NWO Summer 2006 Newsletter -3- Dates to Remember October 1st- The Glass City Corvette Club will also be holding their fall corvette show on October 1, 2006 from 9:00am until approximately 3:00pm. The show will be held at Ed Schmidt on Conant St. in Maumee, which is the usual location for this event. Please take time out to try to attend one or both of these activities to show that we appreciate all of the effort that goes into raising money for our organization. Thank you. There is going to be a meeting of the Spina Bifida Association of Northwest Ohio on October 1, 2006 at the Corvette Show at 1:30pm. At the meeting, we would like to discuss any ideas for the Christmas party, as well as packages to distribute to new Spina Bifida families. December 3rd- Spina Bifida Christmas party. More details will be forthcoming. SBA of NWO Summer 2006 Newsletter -4- Kroger Fundraiser Update Each quarter, I will provide updates on the Kroger fundraiser. To date, the purchases of Kroger gift charges plus reloads onto the cards equal $5090. We received a check for $254.50. In the last month, only two cards have been reloaded. Included in this newsletter is another sales form to sell Kroger cards. They can be purchased in denominations from $5 to $500. The forms can be mailed to me at : 15-518 County Road F, Holgate, Ohio 43527 along with the check made out to Spina Bifida Association of Northwest Ohio. I will handle the processing of forms and the ordering of cards. Nancy Feldhaus will take the money to the Kroger store to pick up the needed gift cards and mail them to you. There is a space on the form for your address where the gift cards should be mailed back to. I will also print information forms about the card to be provided to each customer when they receive their card so they know to keep recharging money to the Gift Card. You should have your Kroger cards in approximately one week from the date I receive your order. Keep Us Informed What have our Spina Bifida members been up to? I would like to include information on what are members are doing each quarter; such as involvement with school groups, outside activities, sports, academic achievements, etc. If you have them, I will also include any individual photos of our members involved in their activities. Don’t be shy! Be proud of your accomplishments! My e-mail address is [email protected]. If you do not have access to a computer or scanner, any updates and pictures can be mailed to the address below. I will return the pictures after I have scanned them into my computer. Monica Mangas 15-518 Co. Rd. F Holgate, Ohio 43527 Another update I need is any change of address, telephone number, or e-mail address. We are hoping to put together a current membership booklet. I have realized that some of the e-mail addresses are incorrect when I attempt to get information out between newsletters and the message is returned. Folic Acid Based on the information from the National Council on Folic Acid, folic acid is a B-vitamin that is necessary for proper cell growth. If taken before and during early pregnancy from a multi-vitamin or fortified foods, folic acid can prevent from 50% up to 70% of some forms of birth defects called neural tube defects. In 1998, the Food and Drug Administration required the addition of folic acid to enriched breads, cereals, flours, pastas, rice and other grain products in order to increase the amount of synthetic folic acid in the general population’s diet. Most experts recommend that women of childbearing years should take 400 micrograms (0.4 mg.) of synthetic folic acid daily, from fortified foods and/or a daily multi-vitamin, and eat a variety of foods as part of a healthy diet. The easiest way to be sure to get the recommended daily amount of folic acid is to take a multi-vitamin every day. New research suggests that folic acid can also help prevent other birth defects, such as cleft lip and cleft palate. Additional health benefits associated with folic acid include reductions in cardiovascular disease and colon, cervical and breast cancers. Studies have shown that folic acid, in combination SBA of NWO Summer 2006 Newsletter -5- with vitamins B12 and B6, can help prevent recurrence of blocked arteries in patients who have undergone angioplasty (a procedure to unblock an artery of the heart). Folic acid may also help prevent Alzheimer’s disease by protecting the neurons critical for learning and memory. Emerging research suggests that folic acid deficiency can also increase the brain’s susceptibility to Parkinson’s disease. Resources: www.cdc.gov www.sbaa.org www.marchofdimes.com www.jama.ama-assn.org content.nejm.org Spina Bifida Assoc. of NWO Officers for 2006 President: Vice President: Treasurer: Secretary: Newsletter Editor: Newsletter Asst.: Membership Coordinator: Ginnette Clark Vacant Nancy Feldhaus Monica Mangas Monica Mangas Beth McBurney White Lori Lindau Grant/Fundraising Coordinator: Clinical Nurse Specialist: Vacant Beth McBurney White SBA of NWO Summer 2006 Newsletter 419-206-2903 [email protected] 419-473-0260 419-264-1131 419-264-1131 [email protected] [email protected] [email protected] [email protected] [email protected] 419-878-8472 419-251-8008 or 877322-2200, ext. 8008 -6-