The Down Syndrome Research Foundation, along with key partners in the medical community, is undertaking a critical survey that could play a role in shaping the future of health care for individuals with Down syndrome in BC. The survey, focusing on the current health status and needs of individuals with Down syndrome in BC, is open to parents and caregivers of a child, youth or adult with Down syndrome residing in the province of BC. DSRF's aim is to have every family in the BC Down syndrome community complete this survey by the end of March. Please see the letter below for further details, or click here to begin the survey.
Thank you for your time in reading this letter.
We are inviting you to participate in the following survey:
B.C. Down Syndrome Survey for Parents/Caregivers of Children/Youth/Adults with Down Syndrome
Many of us are facing a multitude of challenges in the orchestration of the chronic care needs of our children with Down syndrome. We developed this survey in collaboration with physicians from BC Children’s Hospital and the University of British Columbia, in order to get a better understanding of the current health statuses of children and adults with Down syndrome (DS), and what kind of needs and gaps exist in real life.
We are supported by various research networks aiming at improving lives of children with developmental conditions such as NeuroDevNet, TIDE-BC and Children’s Sleep Network.
This 80-question survey will take you approximately 40-45 minutes to fill out, and can be saved and completed in more than one sitting. If you chose to save and return, please take note of your 8 digit ‘Return Code’ and the survey web page link as you will be asked to provide the return code when resuming the survey. We recognize that this is an enormous time commitment for you, and encourage and appreciate your participation, as only with your help can we construct a solid plan aiming to improve health and life quality for children and adults with DS in this province.
Should you choose to complete this survey, your confidentiality will be maintained and the answers you provide will remain completely anonymous and will not be traceable to you in any way. Your survey will be assigned an anonymous running number, and we will never know your name or be able to identify your child, and neither will any other health care professionals, insurance companies, governments, or other institutions. We will ask you for the first three digits of your postal code so that we can identify any trends or patterns that might be present in your region, but this information will not be used for any other purpose whatsoever. Completing and submitting this survey indicates your implied consent to participate in this important study.
The following link will bring you to our survey:https://neurodevnet.med.ualberta.ca/surveys/?s=EekCPeEYAi
Please try to complete the questionnaire as completely as possible, as the degree of completeness will determine the quality of the information obtained. We also recognize that for some of the questions you just might not have answers, so please fill out the survey to the best of your ability.
We aim to publish the results of this ‘needs assessment survey’ and hope for your participation. Each individual contribution will increase the significance of our findings, adding additional value to our publication; direct quotes from survey responses may also be used in teaching materials for healthcare professionals, to bring awareness to common challenges children, youth, and adults with DS experience.
If you are interested in joining our community and would like to connect with the Down Syndrome Research Foundation (e.g. to join a parent group or seek specific information), please click on the following link to email your contact information: http://www.dsrf.org/contact-us/.
If you have any concerns about your treatment or rights as a research subject, you may contact the Research Subject Information Line in the UBC Office of Research Services at 604-822-8598 (email: RSIL@ors.ubc.ca or call toll free 1-877-822-8598). If you have any questions or are looking for resources regarding Down syndrome, please contact:
Ms. Dawn McKenna or Ms. Pat Hanbury at:Down Syndrome Research Foundation1409 Sperling Avenue, Burnaby, BC, V5B 4J8, CanadaPhone: (604) 444-3773 / Fax: (604) 431-9248Email: firstname.lastname@example.org email@example.com
If you experience any technical difficulties or are unsure about how to answer particular sections of the survey, please contact:
Ms. Nadia BeyzaeiSleep/Wake-Behaviour Clinic & Research LabSunny Hill Health Centre for Children/ B.C. Children’s Hospital3644 Slocan Street, Vancouver, BC, V5M 3E8, CanadaPhone: (604) 453-8300 ext. 8408Email: firstname.lastname@example.org
Sincerely,Ms. Dawn McKenna & Ms. Pat Hanburyon behalf of the Down Syndrome Research Foundation
Dr. Sylvia Stockler, BC Children’s HospitalDr Osman Ipsiroglu, Sunny Hill Centre for ChildrenDr. Linlea Armstrong, Department of Medical Genetics, UBCon behalf of the Medical Research Team
The Corporate Governance and Nominating Committee of the Down Syndrome Research Foundation (DSRF) is currently seeking interested candidates for appointment to the Board of Directors, including but not limited to, candidates with the following experience:
• Audit and financial accounting• Human resources and compensation matters• Delivery of educational programs and services• Fundraising
How to Apply
If you are interested in applying, please forward a letter of interest and resume by email to email@example.com. In your cover letter, please specifically explain your suitability for membership in the Board of Directors of DSRF.
Application Deadline: March 31, 2015
DSRF empowers individuals with Down syndrome to reach their full potential throughout life by pioneering and providing educational programs and services.
At DSRF, we investigate best practices and initiate and participate in studies to gain a better understanding of the learning styles of individuals with Down syndrome. Using behavioural assessments, we are gaining new insight into how people with Down syndrome see the world around them and process information. Such insights are enabling us to develop effective programs appropriate to each person - programs that maximize academic, social, health and language development.
Our programs are continually evolving as we gain new understanding through our ongoing research. We offer a wide variety of educational opportunities to children and young adults with Down syndrome, including ground-breaking reading and communications programs, speech therapy, music in motion, summer school and transitions programs which prepare our students to live full and fulfilling lives.
In 2014, DSRF filled 381 student spaces with reading and communication programs and speech and occupational therapy. In addition, we recently completed the last of a series of three part reading instruction videos that have been downloaded over 15,000 times by educators and families around the globe. DSRF’s reach is ever increasing: our website is accessed more than 40,000 times each year.
Going forward, there remains considerable scope to expand our reach to further support and assist people with Down syndrome and their families. We are looking for individuals with relevant and substantive experience to work collaboratively with the other members of the Board of Directors and senior management to execute upon the organization’s vision and strategy.
Thank you for your interest in supporting DSRF’s Board and mission.