Walk-n-Roll for Spina Bifida 2010
Dear Participants, Donors, & Sponsors:
Thank you for being a part of the success of the 2nd Annual Spina Bifida Walk-n-Roll!
Through your participation and efforts we were able to raise over $25,000.00 to be used in programs and for services to enhance the lives of our friends living with Spina Bifida.
As we prepare for the upcoming Holiday Party, 2011 Cycle Event, and our 2011 Camp COWABUNGA, we continue to serve through our Urinary Care Supply program, Welcome Baby Packets, CRS lunches, Monthly Support meetings, Awareness & Fundraising and Family Events.
Please know that your contribution is appreciated and making what we do possible.
If we have your confidence as an organization that strives to meet the needs of our SB community, we would ask you to please consider regular monthly support either online or by check. Our office staff is available to assist you with this process.
If you made a financial contribution online or through a team member and did not receive a charitable gift receipt, please contact our office.
A message from a member
I just wanted to let you all know about an awesome experience I had this past week at Arizona Snowbowl. As an individual with Spina Bifida, I am limited to certain physical activities, including skiing. Or so I thought! Arizona Snowbowl has a fantastic adaptive skiing program, for all ability levels.
When I first heard about adaptive ski lesson, I was interested but a little nervous at the same time. Would my braces fit inside a ski boot? Would I hurt myself because of my lack of balance? Would I tumble down the mountain on the bike? How would I get on and off of the ski lift? What if I couldn't do it? All of these questions were running through my mind on the drive up from Phoenix, but I had finally told myself that if I never try I'll never know. I'm so glad that I did, because I had such a great experience and I want to continue to get on the mountain! The whole staff really made my experience, the girls in the ski school were very welcoming, Jaime and Tommy found a way to get my brace in the boot, Chuck helped with the lesson and took the bike up the lift each time, and the staff working the ski lift stopped the lift and helped to safely get me on and off. I have to say that I couldn't have asked for a better instructor than Tommy. He was patient the whole time, and shared my excitement every time I showed improvement. He had faith in me when I got reluctant to go out of my comfort zone and go further up the mountain, and I'm so glad he did because I had a blast on Bambi and Hart Prairie! In addition, I found out that Tommy experienced paralysis, and that he went through extensive therapy to get back on the mountain. That has inspired me to go through my own therapy to try to one day ski without the bike.
For more information, please contact Jaime Gonzalez at jgonNozalez@arimorezonasnspamowbowl.com and let him know I sent you. :)
Here are a couple videos from my trip:
2010 Cycle Event
On Saturday March 20th we were able to deliver 23 bikes to those living with Spina Bifida. We are proud of this annual event and are forever grateful for Barb Farmer and Chandler Regional Hospital Volunteers for organizing this event every year. We are also grateful for all the donors that make this possible every year including and Sponsored by: Thunderbird Charities, CHW East Valley Volunteers, United Methodist Church of Sun Lakes, and friends of Volunteers: Mike and Barb Farmer, Lynne and Bruce Wright, Jack and Peggy Humphreys.
We would also like to give a massive thanks to Jeff Leeden who is able to sacrifice hours of his time fitting everyone to their bikes before the event and spending the day of the event making sure everyone is comfortable and safe.
Thank you all and see you next year!
New folic acid training program
The Spina Bifida Association of Arizona (SBAAZ) is dedicated to preventing Spina Bifida and thanks to a grant from the March of Dimes, the SBAAZ is set to be the leader in this effort.
Folic Acid and Spina Bifida Awareness and Culinary Training Program
On average 95 babies per year are born with neural tube defects (NTDs) in Arizona and about 48 or more cases are related to the lack of folic acid. Additionally, Latinas have a risk 1.5 to 3 times higher than non-Hispanic white females of having a baby affected by these birth defects; recent research has shown that the consumption of multivitamins with Folic Acid 400 mcg complemented by a folate rich diet at least three months before pregnancy and during reduces the incidence of neural tube defect affected pregnancies by 60-80%.
The SBAAZ program which spearheads this effort is the Folic Acid and Spina Bifida Awareness and Culinary Training (FSACT) program which is currently managed by Maricela Espinar. The mission of the FSACT program is to reduce neural tube defect birth outcomes in Latinas, and upon future expansion of the program, we would aim to reduce neural tube defect birth outcomes in all Valley females of child-bearing age.
The program consists of three components. The first component is a classroom training session which emphasizes the importance of folate rich diets and folic acid vitamins, as well as neural tube defects. The second component is a culinary training session conducted by celebrity chefs, executive chefs, and student chefs at various locations. The last component will provide participants with an opportunity to submit their folate-rich recipes and photos in an upcoming cookbook.
Want more information?
If you would like to support or participate in the FSACT program and fall in one the categories below:
- High school student(s) interested in participating
- Chef offering in-kind donation of culinary expertise
- Culinary school offering your facility for class and kitchen space
- Community or civic organization interested in partnering
- Corporation offering in-kind donation of products for program usage
then please contact: folNoicacid@MoresbaaSpamz.org or 602.274.3323.
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 Kokopelliís 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 Kokopelliís Winery and Bistro, New Front Reality Group, and all who helped to make this happen.
Proposals for Spina Bifida Associationís 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
All proposals are due before 9:00 pm EDT on Monday, May 10, 2010.
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.
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.
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 »
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 Cafť 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.
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.
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
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.
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!
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.
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 donít 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.