SPINA BIFIDA ASSOCIATION
OF ARIZONA

News archive

3/1/2010
Wine tasting and fundraiser a huge success

On a beautiful moonlit night on February 27, 2010 the Board of Directors hosted a Wine Tasting and Fundraiser at Kokopelli’s Winery and Bistro in the Old Town section of Chandler, AZ. Approximately 60 friends, family, and acquaintances, enjoyed the fine art of tasting wine while helping to raise funds to support the programs and services of the Spina Bifida Association of Arizona. Everyone commented on what a good time they had and actually caught the fever. All evening long offers came in for hosting future events, to be part of committees, ideas for future venues, and help with upcoming events such as the Golf Tournament and the Walk-n-Roll a Thon

If you would like to be part of these events or have any ideas please contact any one of the board members or Sharri Muscarella, or office manager at 602.274.3323.

Thanks to Kokopelli’s Winery and Bistro, New Front Reality Group, and all who helped to make this happen.

2/25/2010
Proposals for Spina Bifida Association’s 2010 Young Investigator Awards are now being accepted

Launched in 2005, Spina Bifida Association’s (SBA) Young Investigator Awards research program is unique in that it fosters scientists who are early in their careers and who will dedicate their skill and expertise to improving the lives of those with Spina Bifida. The purpose of the awards is to provide either initial or continuing financial support to a newly-independent investigator in an established research program. The research to be conducted by the fellow may be basic or clinical research but must be relevant to Spina Bifida.

This year SBA and Spina Bifida Foundation (SBF) are pleased to announce the continued availability of funding for research through this program. The 2010 Young Investigator Awards will be providing up to three fellowships. They are:

• The Ashley Rose Advancement in Research Award will provide up to $50,000. The Ashley Rose Foundation was established by Raymond and Linda Pitek in 1997 in honor of their baby, Ashley Rose. Areas of particular interest are epidemiology and causes of miscarriage related to neural tube defects, although other related research is welcome.
• The Tethered Cord Research Award provides up to $40,000. Areas of particular interest are Tethered Cord Syndrome and related clinical and scientific areas.
• The Schneider Charitable Trust Award for $25,000 was established by Hollister, Incorporated in 2008. Areas of particular interest are continence and related clinical and scientific areas.

Project length: One year

Deadline:
All proposals are due before 9:00 pm EDT on Monday, May 10, 2010.

Additional information:
For detailed proposal requirements and more specific information on each award please visit SBA's online Research Center at www.spinabifidaassociation.org. You may also email Joe Giffels, Research Director at jgiffNoels@sbmoreaa.ospamrg.

1/26/2010
SBA scholarship

The Spina Bifida Association is now taking applications for the 2010-2011 scholarship program. These scholarships are granted for up to $2,000 for one year. The applicant must be a high school graduate or possess a G.E.D. There may be up to six scholarships awarded.

View the full details and the application »

12/04/2009
Special announcement from the Centers for Disease Control and Prevention (CDC)

2009 H1N1 information for parents who have children with high-risk medical conditions is now available in a podcast from the CDC.
Listen now »

11/20/2009
2009 Walk-n-Roll for Spina Bifida

Dear Participants, Donors, & Sponsors:

Thank you all for the time, money and support you gave on October 31st and before to help make our first annual Walk-N-Roll for Spina Bifida successful! Because of your dedication and work we were able to collect over $31,000 and counting! We are excited to add this new event to the current line of events that we provide here in Arizona.

The Spina Bifida Association of Arizona is dedicated in promoting the awareness of Spina Bifida as well as helping make life a little easier for all those affected. Now because of all your hard work we will be able to improve the programs and services provided.

We are grateful for the generosity of all our sponsors that helped make this event possible. With the help of our presenting sponsor, SBGenetics along with all other sponsors we were able to end Spina Bifida Awareness month with a bang. Thank you Hard Rock Café AZ, Trader Joes, Dunkin Donuts, TropicalSno as well as all other sponsors who made this event possible.

We are also grateful for the support of all the volunteers that helped with the setup and logistics of the event, including all board of directors with their tireless efforts.

Warmly,
SBAAZ Board of Directors

Event presented by...

Research has shown that genetics play a role in Spina Bifida. The Spina Bifida Genetics Research Project (SBgenetics.org) is conducting research to identify genetic factors associated with an increased risk for Spina Bifida, so that some day it may be prevented.

The study is analyzing the genes involved in how the body utilizes the vitamin folic acid. One potential outcome of this research could be a genetic test to identify women at-risk for having a baby affected by Spina Bifida, who then would be prescribed high dose folic acid. This is the standard treatment for women who have had a previous Spina Bifida affected pregnancy.

The Spina Bifida Genetics Research Project is seeking mothers of children with Spina Bifida, and if possible, their child, to participate in the study. Participation entails completing a short survey and providing a saliva sample. When the research project is complete, participants will be given the opportunity to receive their personal genetic information.

Visit www.SBgenetics.org for more information and to enroll. Participants may choose to receive a $10 Target Gift Card or have a $10 donation made to the Spina Bifida Association on their behalf.

8/26/2009
Spinal Cord Injury Wellness Clinic

The Spinal Cord Injury Wellness Program at St. Joseph's Hospital and Medical Center invites individuals with Spina Bifida to participate within their Spinal Cord Injury Wellness Clinic for Comprehensive Annual Evaluations.

At Clinic, assessments will be completed by their spinal cord injury experienced team:

• Clinic Physiatrist-Board Certified in spinal cord injury (optional)
• Occupational Therapist
• Physical Therapist
• Registered Nurse-Certified in Rehabilitation
• Social Worker
• Therapeutic Recreational Specialist

Recommendations are then forwarded to your referring physician for the follow up management of your medical and rehabilitation needs relating to Spina Bifida.

This clinic is usually scheduled the 2nd Thursday of every month.

For more information, please contact:

Sonya Perduta-Fulginiti, RN, MS, CRRN at 602.406.5195
Spinal Cord Injury Wellness Program, Outpatient Rehabilitation
114 W. Thomas Rd.
Phoenix, AZ 85013

8/20/2009
2009 National SBAA Conference overview

The Spina Bifida Association of America (SBAA) recently concluded its 36th National Conference held in Orlando, Florida. Many thanks and recognition goes to all of the speakers, volunteers, and attendees for contributing to what was an amazing event!

Held jointly with the International Federation for Spina Bifida and Hydrocephalus (IF), this year's Conference welcomed over 760 attendees from 46 states and 17 countries.

We can't wait to see you all next year in Cincinnati from June 27 - June 30 for the 37th National Conference! Registration will be available online in early February 2010.

Conference presentations

Weren't able to attend this year's conference or didn't have a chance to attend all the sessions on your list? Presentations from this year's conference are available on the 36th National Conference website. As more presentations are sent to us by speakers, they will be added to the site so check back!

Plenary session

This year's plenary session, "The Impact of Advocacy: Taking Action and Making a Difference", highlighted the persuasive power that each individual in our community has to invoke real change. If you are interested in the power of advocacy, visit SBAA's online Legislative Action Center to see the many ways that you can help! And don't forget to sign up to receive SBAA Action Alerts — with just the click of your mouse, you can help make real positive changes for our community.

My Spina Bifida Story project

Riding the momentum gained during the conference plenary session, we are asking that everyone in our community tell their story and make a real difference by submitting it to the My Spina Bifida Story project. At the heart of the challenges faced by the Spina Bifida community are compelling accounts that can be the key to positive change. Imagine our nation's policy makers working more effectively for you, motivated by the compelling story of you, their constituent.

SBAA will share the stories you submit during our visits to Capitol Hill in a continuing effort to advocate to improve the quality of life for the 180,000 Americans living with the challenges of Spina Bifida. Don't miss this opportunity to share your story with the Members of Congress who make decisions that affect each of our lives.

For more information on this project, or to submit a story, visit the Tell Your Spina Bifida Story and Help Our Community page.

John Kemp, Disability Activist

Many of you were fortunate enough to hear our wonderful keynote speaker John Kemp during the Conference's Celebration Luncheon. Mr. Kemp's impactful story about living life as a disability activist was delivered with humor, wit, and inspiration. If you are interested in purchasing Reflections from a Different Journey, the book co-authored by Mr. Kemp which features 40 stories by successful adults who grew up with disabilities, please visit amazon.com.

View past conference information »

4/6/2009
A President's Welcome

Hello, my name is Benjaman David Scanlan and I am the new President of the Spina Bifida Association of Arizona (formerly the Arizona Spina Bifida Association). My life changed on October 17, 2005 when my son Gabriel was born with Spina Bifida in Nashville, Tennessee under the MOMS study. We have met and become acquainted with many wonderful families facing the same obstacles we have and will face. My wife, Sandee and I have since become involved with the local golf tournament as well as the association in many ways. We feel that there needs to be more awareness of Spina Bifida because of the amount of lives that it affects. With the increased awareness, more innovative technologies will begin to emerge to help those living with Spina Bifida as well as more funding for programs to help those here in our Arizona community.

As you can see from the name change there are a lot of exciting changes happening with the Association. As a board of directors we have just renewed our commitment with the Spina Bifida Association. We are now a chapter under the Spina Bifida Association nationwide. By joining together as a chapter of a national organization we will be able to tap into the resources they have as well as stay up to date with the most recent updates on medical advances. Another change that has been made is the update of this website; www.sbaaz.org. The new website now has all the information you need to keep you informed of upcoming events as well as programs and fundraisers. If you have any information that you would like to update/add to the site let me know. We want to make sure that you use the site for the most up to date information on medical advances as well as events in our area.

I am grateful to have met so many wonderful people in the community and hope to meet many more. Please don’t hesitate to contact me directly by email at bscNoanlan@MoresbaaSpamz.org with any questions or concerns. We as a board need your input to help make this association better than ever.

To become a member of the Spina Bifida Association of Arizona is completely free now. We encourage you to help us find everyone with Spina Bifida in the state of Arizona by having them contact us with updated information. There are numerous ways to contact us.

Thank you,
Benjaman David Scanlan
President/Board Chair