Spine-Line Online
Donors-2006
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REAL STORIES FOR ADULTS LIVING WITH SPINA BIFIDA
We are expanding the Real Stories section of our website!� Through our Recurrence Prevention Campaign, many young adults with spina bifida have contacted us with regards to our Real Stories section of our website.� They told us that they would like to share what it's really like to live with spina bifida.� If you're an adult with spina bifida and you'd like to share your Real Story, please email Adriane K. Griffen at [email protected] to receive a confidential questionnaire.� All submissions are subject to review and may be used, in part or in their entirety, for the purposes of programs of the SBAA. �Please consider sharing your Real Story experiences through this survey.�
Kris Chynoweth

Karyssa Miller

Graham Webb - Opening address at the International Conference

The Oldest Person with Spina Bifida

Good News from Raelene Decker

PA adults between the ages of 19 to 64 whose family income does not exceed  200% of the Federal Poverty Guidelines may qualify for AdultBasic insurance.  Some of the benefits  in the program include: doctor visits & preventative care, emergency and diagnostic care, X-rays, inpatient hospitalization, outpatient services, maternity care.   AdultBasic is funded from the revenues provided to the Commonwealth from the National Tobacco Settlement.  Eligibility requirements and enrollment forms are available at our office.
This newsletter is published 12 times a year by the Spina Bifida Association of Lancaster County (a not for profit organization), Patricia Fulvio, Editor.  Items must by received by the 15th of the preceding month to be considered for inclusion.  Newsletter items may be reproduced without permission, but with credit given.  Although every effort is made to ensure that information is accurate and current at the time of publication, the reader is advised that knowledge in the field of spina bifida is growing rapidly.  Views and opinions offered are those of the authors and do not reflect the opinion or the endorsement of the Board of Directors or the membership.

                       
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Board of Directors
Amy Graver, Chairman
Jim Brown, Vice Chairman
Jean Hopkins, Treasurer
Katrina Stirn, Secretary
Patricia Fulvio, President
Directors:
Dennis Carney
Sue Mooney


Committee Members & Consultants:
Clark McSparren, MD
Barry Bruce
Peter Faranda-Diedrich
Albert Fulvio
Don DeHart
Corey Craver

Family Councils:

Lancaster Council
Al & Patricia Fulvio 717-786-9280
Jim & Jean Hopkins 717-786-1047
Rick & Amy Graver 717-786-2233

York/Adams Council
Kim & Bob Gladfelter 717-235-3635
SB Council Central PA
Dennis & Linda Carney 717-258-6402

Committees:

Legislative Contacts
   Chester County
  
Deb Reinhart                  610-399-1290
   Cumberland County
  
Anne Falsone                 717-737-0175             [email protected]
   Franklin County
 
Pete Lagiovane              717-264-8231              [email protected]
   Lycoming County
   
Nancy Regopoulos        717-322-0431    

Early Intervention
  
Linda Radzik                 717-843-0942               [email protected]
Latex Allergies
   
Donna Verwey               717-687-7956
Lipomyelomeningocele Network
  
Chris McAfee                610-582-5937               [email protected]


SBAgPA Office
Hours             
9am-5pm, M-F, and by appointment
Location          
215 East State Street, Suite D, Quarryville, PA 17566-1268
Phone            
717-786-9280                     toll free in PA    888-770-SBPA (7272)
Fax.                  
717-786-8821
E-mail               
[email protected]
Home Page      
http://www.geocities.com/SBAofgPA


Spina Bifida Association of America
Phone..
202-944-3285
Information/Referral..
800-621-3141
E-mail..................
[email protected]
Home Page
http://www.sbaa.org
Spina Bifida-      Our Association        SpineLine Online
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PATF Offers a Vital New Funding Source for assisitive Devices

Are you in need of a ramp, hearing aid, adaptive seating or other type of assistive technology to help with everyday activities?  If so, Pennsylvania Assistive Technology Foundation (PATF) now has two loan programs to help people of all income levels purchase a wide range of assistive devices, many of which are not covered by medical insurance or other funding.

Since 1998, PATF has been helping Pennsylvanians purchase assistive technology such as adapted vehicles, wheelchairs, and home modifications with low cost loans.  The current interest rate is 4%.  Repayment periods are based on the useful life of the device, or up to ten years for a home modification.  PATF routinely extends loans to people who do not qualify for a loan through a traditional bank, or who receive social security or other fixed income source.

The newest program, the PATF �Mini-Loan,� provides 0% interest cash loans to purchase assistive devices costing between $100 and $1000.

For more information call PATF at 1-888-744-1938 or visit the website at
www.patf.us

Adult Get-togethers 

Do you want to meet other adults with spina bifida? 
We are scheduling summer get-togethers now!   If you would like to help with planning, call Pat.  We can meet in a restaurant or a meeting room where we can bring refreshments in or even a park!
Call or
email Pat if you would like to meet others in your area.  Please have the following information:
Name, phone number, county, city, email
Best day of week and time to meet       
Second best day and/or time
Suggested accessible location
We are looking for individuals aged 18 and older.  Your spouse or date is welcome.
Online Children�s Book

I just received a nice storybook/coloring book about a child that has spina bifida.  It is geared towards the 4-7 year age group.  It was put together by Children�s Hospital in Los Angeles, CA.

Right Under My Nose was created to help children with spina bifida understand their condition, discover new ways to enrich their lives and help their parents and caregivers answer many of the tough questions that arise.
With a fully interactive story, activities, tips, and a printable version of the whole book, this site is intended to be educational and fun. Enjoy! 

You can access it online at: 
www.MySpinaBifidaBook.org
You can also listen to an audio version of the book. 
A Spanish version is available at the same site.
Written by Claire Austin, MPh    and Stacey Mizokawa, PhD.
Housing
Looking for an Affordable Apartment?


Use the Pennsylvania Affordable Apartment Locator ! 
www.phfa.org/pal.
2007 SBA SCHOLARSHIP PROGRAM

The 2007 Spina Bifida Association (SBA) Scholarship Program is now open.  All students living with spina bifida are encouraged to apply.  With the assistance of donors who recognize the value of education, the SBA Scholarship Program offers two different programs for people living with spina bifida.

SBA Scholarship Programs:
1. SBA Four-Year Scholarship
2. SBA One-Year Scholarship
If you have any questions concerning the SBA Scholarship Program, feel free to contact:
Caroline Alston
Director of Programs and Field Initiatives
4590 MacArthur Blvd, NW, Suite 250
Washington, DC 20007-4226
800-621-3141 ext. 23   202/944-3295 (fax)
[email protected]

Download at:
http://www.sbaa.org/site/c.gpILKXOEJqG/b.2021333/k.5C5D/SBAA_Scholarship_Fund.htm
Membership Form
2007
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