SBARV Welcomes New Executive Director
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May Is Spina Bifida Awareness Month
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April Support Meeting:
Will be at BRILC, April 5, 3:30-5:00 p.m. Those living with Spina Bifida, their famililies, or anyone interested in just learning more about the Spina Bifida Community is welcome!
Childcare availble.
Dear SBA Chapter Executive Director or Officer,
I am emailing you to ask for your help in recruiting subjects for a
research study on bowel and bladder continence among children with spina
bifida. This study is funded through the CDC National Spina Bifida
Program and the Association of University Centers on Disabilities. We
feel that this is a very important study, yet we have had difficulty in
recruiting subjects.
It is our aim to see if behavioral therapy can improve bowel and
bladder continence and increase overall quality of life in children with
spina bifida. We are hoping to enroll 60 children into the study, with
half the study participants randomized to a behavioral therapy group and
half to a control group. Children in both groups will continue to
receive usual care from their regular health care providers. We feel
that behavioral therapy should improve compliance and help to overcome
barriers to adherence to a child’s prescribed bowel and bladder
regimens.
Children with spina bifida, 5 through 18 years of age, who have bowel
and bladder continence problems are eligible to participate in this
research study. All study visits will take place at the Kennedy Krieger
Institute in Baltimore, Maryland. Study participants will receive $60
for each study visit. We also hope to reimburse families for miles
traveled for each visit.
We could use your help in informing parents of children with spina
bifida about this study. I have attached a recruitment flyer describing
the study. The flyer has been approved by the Johns Hopkins IRB for
distribution to potential participants. We would very much appreciate
any help that you can provide.
Any parents that are interested in enrolling their child in this study,
or in finding out more about this study, should contact our research
coordinator, Michelle Campbell, at 443-923-9132 or 800-873-3377
extension 9132.
If you have any other questions, please do not hesitate to contact me
at 443-923-9130.
Thank you in advance for your support and Happy New Year!
Sincerely,
Eric B. Levey, MD
Director, Keelty Center for Spina Bifida and Other Related Conditions
Kennedy Krieger Institute
Assistant Professor, Department of Pediatrics
Johns Hopkins University School of Medicine
Kennedy Krieger Institute
707 North Broadway, Room 100-K
Baltimore, MD 21205
Office (443) 923-9130
Fax (443) 923-9145
Pager (410) 408-6697
Appointments (443) 923-2600
Email:Levey@kennedykrieger.org
Congratulations!
SBARV's Mens Softball Team
THE ROCKETS
For taking home this year’s Championship Parks & Recreation “Open Men’s League” Trophy! Thanks guys, for representing our group by sharing the SPina Bifida Message each night you played…it takes all OF US to “promote the prevention of Spina Bifida and enhance the lives of all affected,” and you have certainly been another effective tool in this effort. GREAT job!!
Roanoke Times/SBARV News
New Officer Nominees
Jim Whitley, has begun structuring a slate of officer nominees for '08 and '09. New officers will be elected and assume office in May of '08. Any interested can email Jim at pwhitley@aol.com.
Congratulations go out to SBA of Roanoke Valley
At the Leadership Institute [at the SBAA Annual Conference], John and
Sheryl Paul extended a challenge to all Group Members; the first three
Group Members to bring in $4000 in individual contributions would
receive a $1000 matching donation from the Paul's. Congratulations to
SBA of Roanoke Valley who accomplished this within the first week they
arrived home! Who will be next? Maybe you! [Excerpt from the
SBAA Leaders Online Field Update, July 13, 2007]
- In response... to recent inquiries regarding life insurance coverage for those living with spina bifida, we want to share the following:
Life of Georgia Insurance Co., Customer Service Center # 1-888-968-5433 Local Representative, Larry Richard Cook @ 540-381-9382
Thanks so much to Jim & Phyllis Whitley for bringing the above to the group's attention! As all of you probably know, it's not easy to find this type of coverage. [May 2007]Inclusion of products/services on this web site does not imply endorsement by the SBA of the Roanoke Valley
In an effort to strengthen and increase family involvement in Virginia's early intervention system, DMHMRSAS, Virginia's Lead Agency, funds the Family Involvement Program housed at
The Arc of Virginia -- A network of parents helping parents one-on-one. [Dec 2006, Updated May 2007]
SBARV is a member of the Sherwin-Williams "Neighbor -to-Neighbor" Program which offers a 20% discount on all regular priced items or 5% off sale prices! No strings attached.......just contact us for a discount card, save yourself some money, and as a result S-W gives an annual cash-back bonus to our group! For more details, or to ask for a Discount Card, please contact us @ 540-342-1231, x4010, or pick one up at monthly meetings! They are also available at your local S-W store, 3574 Electric Rd., Roanoke. [Nov 2006]
Friday Night Friends started in Dallas, is a respite/recreational program designed specifically for those with special needs. A similar program is currently in the planning stages here in the Valley. SBARV the
Roanoke Valley Baptist Association and other special needs organizations have joined forces to make this monthly event a success. Click here for more information and application forms. [Oct. 2006]