Spina Bifida and Hydrocephalus Association of British Columbia
1977 - 2022
45 Year Anniversary
This year marks the 45th year anniversary of the Spina Bifida & Hydrocephalus Association of British Columbia.
We are so fortunate that the parents in 1977 had the wisdom to create a society and registered charity.
A look at the register of 1977 lists the directors as
Christine Farris
Steven Gable
Beverley Hebert
Beverley Ann Moody
Loretta Joyce Nyberg
Wendy Thompson
William Dadson
While throughout the years the directors have changed, one thing remained constant, the passion to make sure that individuals and families are supported.
Support comes in many forms these days with help with medical supplies, equipment, bursaries for post-secondary, and the ability to access education materials on many of the facets of Spina Bifida and Hydrocephalus.
We extend our gratitude to the directors, both past and present, who are keeping the association moving forward and to you the members who contribute both through volunteerism or monetary. Thank you!
Always know, we are here to support you and accompany you on your journey with Spina Bifida & Hydrocephalus!
Research Study Opportunity for Youth 12 to 30 yrs living with a Physical Disability -McGill University ( Posted Jan 2021)
We are conducting a research project to evaluate participation in daily activities at home, school, community, and the workplace, using a questionnaire called the Y-PEM (Youth, Young Adult Participation and Environment). We need your assistance to test whether the Y-PEM can capture your participation and whether it is valid and consistent. If you are interested to be part of our study, please contact us at saeideh.shahinvarnousfaderany@mail.mcgill.ca or dana.anaby@mcgill.ca.
For more information click here.
UPCOMING EVENTS
SBHABC Board Meeting
Wednesday, September 6, 2023, @ 6:30 p.m. Spina Bifida & Hydrocephalus Board meeting
PARTICIPATE IN RESEARCH: A study for youth with spina bifida and/or hydrocephalus 12-26
How do you think and feel about your body and what things affect the way you eat?
A research team at the Bloorview Research Institute is doing a study to explore eating behaviours and body image in young people with spina bifida and/or hydrocephalus (SBH). As part of this, they are asking young people aged 12-26 with SBH to fill out an online survey to tell them about their eating behaviours and body image. The results of this study will help healthcare professionals improve their care when working with young people with SBH.
To take part in this study, we will ask you to complete an online survey. This survey will ask you about your eating habits and how you feel about your body. The survey will take about 30 minutes to complete.
This is the first study to look at this topic in Canada!
You do not have to take part in this research study. Any decision you make will have no impact on the care you receive at Holland Bloorview or anywhere else.
If you are interested in participating in this study, please click on the following link: https://redcap.link/SB
If you have any questions, please contact the Research Coordinator, Revi Bonder, at rbonder@hollandbloorview.ca.
View our latest Newsletters
Paid Research Opportunity
Evaluating marketing messages for Physical activity campaigns ( 18yrs +) Queens University Revved Up Lab is recruiting participants 18yrs + with a self-identified physical disability. For more info click here
Free Online Course for Professionals working with Parents with Physical Disabilities
Course - Caring for Pregnant and New Parents with Physical Disabilities #17969
Developed by Karen Hodge, Melanie Basso & Amanda Lee
For more info or to register, click Here
SmartMom
CANADA'S FIRST EVIDENCE-BASED PRENATAL EDUCATION PROGRAM VIA TEXT MESSAGING
Text messages are delivered at no cost, are timed to be relevant to gestational age, and include links to online resources and local services. The program also offers supplemental text messages for specific concerns. SmartMom is endorsed by the Society of Obstetricians and Gynaecologists of Canada ( SOGC).
For more info visit smartmomcanada.ca
MyBooklet BC
is A FREE online tool that families and people with disabilities can use to create a beautiful and personalized information booklet for a loved one or for themselves.
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Are you tired of constantly repeating your "story" to doctors, teachers, therapists, friends, and family?
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Do you wish all your important information was in one document?
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Do you wish you could share more than just the medical and diagnostic facts?
If you answered yes to any of these questions, you'll want YOUR OWN myBooklet now!
Click Here to get started.
Participate In Research
Nov 20, 2019 Survey on Accessibility in Canada
KITE, which is the research arm of the Toronto Rehabilitation Institute is conducting on accessibility in Canada. The purpose of the study is to learn about the main barriers to accessibility that persons with a disability, older adults (65 years old or older) who do not have a disability, and caregivers for persons with a disability encounter in Canada.
Click Here to learn how you can be involved.
Oct 30, 2019 INNOVATIVE TECHNOLOGY FOR PEOPLE WITH
DISABILITIES AND THEIR CAREGIVERS
Dr. Mortenson and his research team from the University of British Columbia are looking for volunteers to participate in a study prioritizing technological solutions for people with disabilities and their caregivers.
Click Here to learn how you can be involved.
THANK YOU!
Our Sincere Thanks to Dean Chernoff, Becky, Harmony Ward Loop, Crystal Carroll and Amanda L for hosting Facebook fundraisers on their birthdays. Many Thanks to their friends and family who gave a donation to us on their behalf.
