Celebrities With Spina Bifida

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:
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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
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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.
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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.
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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
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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
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