We are a group of parents of children with spina bifida who wish to draw on our own experience, connections, and resources to improve the lives of other families in the Canadian spina bifida community. We’ve got your backs.
Director, Community Relations
Alana and her family live in a small town east of Peterborough Ontario. She has been a social service worker since 2013, specializing in mental health and youth work. Alana became involved with Spina Bifida Families of Canada after undergoing fetal surgery in 2017. Alana is passionate about advocating and creating community through the elimination of barriers. She joined this group so she can pay it forward.
Director, Medical Education
Amanda has been a perinatal nurse since 2004 and a spina bifida mom since 2009. She brings together her knowledge of nursing with her passion for helping spina bifida families. She was an avid blogger of her family’s life with spina bifida from 2009-2016 and created an educational blog with the knowledge she learned through her journey. Amanda is the founder and administrator of the Our Lives, with spina bifida Facebook group, that brings families in Canada together. She strives to help families better understand the medical side of spina bifida and wade through difficult names and unfamiliar territory.
Chris has spent his entire career to date working at, and consulting with nonprofits in Canada. He brings many years of fundraising and information management governance expertise to his role as President of the Board of Spina Bifida Families of Canada. Chris lives in Burlington, Ontario and is a father of a child with spina bifida.
Katrina has been in the accounting field since 2011. Prior to the birth of her daughter Jacqueline, she had no prior medical vocabulary. Since diagnosis day in 2017, she has learned more than she ever thought possible. She takes great pride in supporting newly diagnosed families navigate through the process and, helping make it a bit easier at a time when things are at their worst. She lives in New Brunswick with her daughter, and husband, Jeff.
After a successful career at Philips, Romeila transitioned into real estate. She is a Real Estate Broker at Keller Williams Referred, where she leads a high-performing real estate team. She has served as the Profitability Chair at her market centre’s Agent Leadership Council since 2016 and teaches real estate classes at the brokerage. Romeila enjoys giving back to the community and has previously served on the Board of Directors at the KMC Multicultural Centre in Toronto, a centre that helps newcomers to Canada transition to their new lives. Romeila is a mom of 5 wonderful kids with the youngest, Eiko being her only daughter and the family spina bifida warrior. Eiko was the first spina bifida in-utero repair in Canada in June 2017. Eiko is currently a patient ambassador for Sick Kids and Mount Sinai hospitals. Romeila and Eiko share their stories so that future diagnosed families can see what their spina bifida babies are capable of.
Vision, Mission, & Values
People with spina bifida can do anything. Because of us, children with spina bifida will grow up in a supportive, understanding, and accepting community. These brave and resilient kids will grow into strong and confident adults who will achieve their goals, chase their wildest dreams and explore all of life’s possibilities. We, as a spina bifida family, will foster an environment for greatness to happen for people with spina bifida all across Canada.
Mission & Purpose
- We believe those living with SB CAN
- We provide love and understanding
- We are a safe space to ask questions and share experiences
- We are a bridge to medical research
- We are proud ambassadors for the community
- We are SB families, for SB families
- We believe that anything is possible
- We know life with spina bifida is beautiful
- We are relationship-driven – open, frank, and supportive of all
- We are positive, optimistic and forward-thinking – SB CAN!
- We educate and improve Canadians’ perception of spina bifida
- We are a family, here to support each other in good times and in bad