October Spina Bifida Awareness Month, by Robin Smith

Friday February 27, 2015

Every year during the month of October, GRSBA and many others celebrate Spina Bifida awareness Month. We spend the month sharing facts about spina bifida, participating in social events and spreading awareness through our own personal accounts of living with spina bifida or raising a child with spina bifida. This year was no different, although preparations for Spina Bifida Awareness Month started long before October 1st.

Over this past winter, GRSBA (with the help of Tom Turner and Robin Smith) partnered with Senator Robach and his office to get a resolution passed that officially recognizes October as Spina Bifida Awareness Month in New York State. You can view the resolution online at http://open.nysenate.gov/legislation/bill/J2747-2013. A few GRSBA Board members met with the Senator on October 1st to thank him for his efforts and spent a little time discussing spina bifida and some of the challenges that are faced by the group; specifically health care costs and how difficult it is to qualify for assistance. Senator Robach was also nice enough to stop by our annual bowling party later in the month and meet some more of our members.

This year GRSBA also hosted two informational sessions for our members and the  general public during October. The first session was on the Cincinnati Children’s Hospital’s bowel management program. and the second session focused on executive functioning difficulties and  non-verbal learning disabilities. We were very pleased at the
turnout for both nights and look forward to planning more events like this in the future!

Two GRSBA members were also able to speak about spina bifida on Fox Rochester’s
morning show, Good Day Rochester. Lauren Burdett and Chase Marcott were interviewed by Norma Holland and Jennifer Johnson, and spoke about Spina Bifida Awareness Month and living with spina bifida. A special thanks goes out to Lauren and Chase for taking the time to participate in the interview and to 13WHAM/Fox Rochester for helping us spread
some awareness!

GRSBA also took steps to help spread awareness all year long by starting a public
Facebook page! This page will be used to share photos from our past events, publicize
upcoming events and fundraisers and share relevant information and articles about spina bifida.

You can find our page at http://www.facebook.com/GreaterRochesterSBA Find us, like us  and share us with your friends!  And don’t worry! Our private, members-only, Facebook group is still available as a safe place to seek advice and share your thoughts.

Thanks to all of the individuals, presenters, families and friends that helped organize all of this year’s events. And a special thanks to all our members who were able to attend! We can’t wait to start planning for next year’s Spina Bifida Awareness Month!