Blog PostsJul 12, 2019

Living Well With Spina Bifida: The San Francisco Education Day

On Saturday, June 8, over 80 people from the Spina Bifida community, including adults with Spina Bifida, parents and clinicians gathered at the University of California San Francisco William and Susan Oberndorf Auditorium to kick off the Education Day season with the Living Well with Spina Bifida. This event is part of a series of education days that we host throughout the year. This jam-packed day is an opportunity for parents and adults with SB to hear from top experts on a variety of topics, including bladder and bowel management across the lifespan, transition, education, physical activity, and sexuality. There was also a representative from Youth Rally, who gave a presentation about their camp that hosts kids with bowel and bladder conditions.

In addition to a wealth of information, the Education Day also served as an opportunity for attendees to network with fellow participants as well as clinicians. We were extremely fortunate to partner with four clinics in the San Francisco Bay area that included:  UCSF Benioff Children’s Hospital, The Northern California Regional Spina Bifida Program at Kaiser Oakland Medical Center, Shriner’s Hospital for Children- Northern California, and Stanford Children’s Health. 

Adam Guerrero, an adult with Spina Bifida, noted this was his second Education Day.  His favorite part of the day was the session on health and fitness because he is currently on a journey to lose weight and get in shape. Adam is an aspiring motivational speaker who wants to inspire children with Spina Bifida. For this reason, Adam also enjoyed the networking opportunities he had with clinicians and fellow attendees.  “Even if you think you know everything you need to know about your disability you should attend an Education Day. It’s a great opportunity to meet new friends that can relate to you on a deeper level,” he said. 

Alejandro Lanzas was a first-time attendee. He was invited to the event through his Spina Bifida clinic in Oakland, California. Alejandro believes that Education Days are important because people with Spina Bifida need to be informed on all topics related to their disability so that they can effectively advocate for themselves. In Alejandro’s case, Spina Bifida runs in his family, as his teenage daughter has Spina Bifida Occulta. “I have always advocated for myself, but I also want to advocate for young people, like my daughter,” he said. 

Alejandro’s favorite session overall was “Bladder Management Throughout the Lifespan,” because even though this topic doesn’t affect him personally, it was interesting to learn new information. He also enjoyed Dr. Gerald Grant’s segment during the “Working with Your Healthcare Team for a Successful Transition” panel. Dr. Grant, a pediatric neurosurgeon, discussed neurological issues in people with Spina Bifida and how to successfully transition into treating them as an adult. This was meaningful to him because when people with Spina Bifida reach adulthood, there are fewer options for care, so adults need to fully understand their health so that they can communicate with providers. 

The San Francisco Education Day was a huge success. It would not have been possible without the hard work of our SBA staff, clinic partners, and generous sponsor, Coloplast. The Education Day dates and locations for the remainder of 2019 are: 

Saturday, August 3- Houston Texas

Saturday, September 21- Las Vega Nevada

Saturday, October 12- Memphis Tennessee

Stay tuned to our website and social media platforms for information on these upcoming events, and Education Day announcements for 2020.