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OFCP Newsletter and e-Bulletin, present and past issues, and sign-up
Announcements & Press
Surveys, Studies & Research Participants
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OFCP Newsletter & e-Bulletin

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OFCP Announcements & Press

IMPORTANT ANNOUNCEMENT to all parents who have a child who has cerebral palsy and is attending a school in Ontario, regarding representation on Special Education Advisory Committees (SEAC).

The Ontario Federation for Cerebral Palsy (OFCP) is a non for profit charitable organization committed to supporting people with cerebral palsy of all ages in the province of Ontario. As many of our Members are students, attending schools in your area both primary and secondary, we would like to reach out to you to share our interest regarding your potential involvement.

Each school board in Ontario is responsible for establishing Special Education Advisory Committees (SEACs) and the regulation made under the Education Act sets out the requirements for that committee.

The Special Education Advisory Committees provide important advice on special education to their local board or school authority. They are comprised of trustees and representatives of local associations that further the interests and well-being of exceptional children or adults.

Information regarding Special Education Advisory Committees

SEAC members must be qualified to vote for members of the board and must be a resident in its jurisdiction. Members appointed to represent First Nations students do not need to meet this requirement as the students are attending the board schools under a tuition agreement.

Employees of a school board are not eligible for membership on the SEAC of the board that employs them. However, they can be members of another school board SEAC as long as they are eligible to vote for members of that school board.

The OFCP has been approached by the following school boards to advise us of a possible opportunity to sit on their SEAC representing OFCP:

Kawartha Pine Ridge District School Board
Waterloo Region District School Board
Simcoe County District School Board
Hamilton Wentworth Catholic District School Board

The OFCP would be interested in knowing if there are any parents of a child who has cerebral palsy who would be interested in representing OFCP on these school boards, should opportunities for current or future representation become available. Please let us know at this email address if interested to learn more about potential involvement with the school boards. Please contact us at cathy@ofcp.ca regarding Special Education Advisory Committees (SEAC). Thank you.

Federated Health Charities Kick Off Annual Charitable Giving Campaign

Federated Health Charities is a coalition of 16 provincially-based health charities in Ontario dedicated to raising funds for its members within the Ontario Public Service that will support health education and awareness, medical research, and client and patient services.

Ontario Federation for Cerebral Palsy (OFCP) has been one of the charities lucky enough to receive funds from the Federated Health Charities campaign for 27 years now.

Click here to read more...

Surveys, Studies & Research Participants

GUIDELINES AND REQUIREMENTS FOR RESEARCH RECRUITMENT REQUESTS

The Ontario Federation for Cerebral Palsy is committed to supporting the most advanced and highest quality of Cerebral Palsy research, including the cure, cause, prevention, improved treatment and/or understanding of cerebral palsy. The OFCP accepts applications for recruitment from the fields of biomedicine, health services and systems research, population studies and clinical research. The OFCP Cerebral Palsy Medical and Research Advisory Board is pleased and proud to assist fellow researchers who meet criteria in order to recruit participants for their projects.

For the application form and guidelines for research recruitment requests please click here

OFCP DISCLAIMER

OFCP is committed to supporting the most advanced and/or highest quality of Cerebral Palsy research in Canada. OFCP is not involved in the research recruitment programs listed below but has agreed to list the following research projects which are seeking participants for their projects. Any participation or involvement is at the discretion of each individual and is not connected with the Ontario Federation for Cerebral Palsy.

Environmental factors that may be associated with choices of spelling and/ or graphic symbol use during communicative interactions

You are invited to participate in a Queen’s university research study “Environmental factors that may be associated with choices of spelling and/ or graphic symbol use during communicative interactions”. Queen’s University is looking for adolescents with physical disability (who have difficulty manipulating objects) and who use AAC. You are invited to participate in this research study if you:

Use AAC
Have a physical disability
Are between 10-19 years of age
Use picture symbols and are learning how to spell (using some combination of both)

The researchers want to learn about how people who use AAC make decisions whether to use pictures or to use alphabet board to communicate. We want to learn from you and other people who use AAC, in order to help others to become literate.

Participating in this study involves two to three visits either at your home or at Queen’s University or alternatively, if you prefer, you these sessions can occur online via zoom. You will be speaking with your caregiver on certain topics (e.g. your favourite TV show). The visits will be audiotaped and videotaped. Each visit will be no longer than 60 minutes. The researcher will be asking you why you use spelling or picture symbols during your communication with your caregiver.

There is a $100 honorarium for participating in this research study.

Please contact Paulina Finak at 18pmf@queensu.ca or Dr. Batorowicz at beata.batorowicz@queensu.ca

For more information click here

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Research Study Looking for Feedback on an Online Self-determination Toolkit for Youth with Disabilities
Research Institution: Holland Bloorview Kids Rehabilitation Hospital - Bloorview Research Institute

We are looking for feedback on an online self-determination toolkit for youth with disabilities. Please consider participating in our research study: https://www.hollandbloorview.ca/partners-enhancing-healthy-and-productive-work-young-men-and-women-disabilities-simulation-and-3

Participants will receive a small token of appreciation. If you are interested in participating in this study or have additional questions, please contact Hiba Ahmed at hahmed@hollandbloorview.ca or 416-425-6220 x6362 with your interest, and they will get back to your shortly. Contacting us does not obligate you to participate in the study.

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Holland Bloorview & SickKids Researchers Seeking Participants for Drug Trial to Improve Movement and Thinking Skills for Children Diagnosed with Cerebral Palsy

The Metformin + CP research team at Holland Bloorview are looking for participants for a clinical drug trial to see if the drug Metformin can improve movement and thinking skills for children aged 5-12 who are diagnosed with cerebral palsy and meet other criteria. Eligible kids will take the drug Metformin or a placebo for 16 weeks while taking part in twice-weekly physiotherapy at Holland Bloorview.

Visit their website www.hollandbloorview.ca/metformin-motor-and-cognitive-improvement-children-cerebral-palsy-feasibility-study or contact the research coordinator Daniel Warner (dwarner@hollandbloorview.ca 416-425-6220 ext. 6482) for more information.

This study is being conducted by Dr. Darcy Fehlings (Holland Bloorview) and Dr. Donald Mabbott (SickKids)and is approved by the Research Ethics Boards of both Holland Bloorview and SickKids.

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Children and Teens in Charge of their Health: A feasibility study of solution-focused coaching to foster healthy lifestyles in children and young people with physical disabilities –Parent Pilot

Do you want to support your child in fostering a healthy lifestyle? We want to know whether solution-focused coaching with parents can help young people with physical disabilities stay active and eat healthily. Participate in the study where you will get 6 months of solution-focused coaching and let us know what you think!

Who can participate?

Parents of children and youth between 10 –18 years
Your child has cerebral palsy or spina bifida
Your child can physically move some part of their body on their own with or without a mobility device
You can communicate in English
You have home internet connection

What’s involved?

You will receive solution-focused coaching for 6 months that includes 1 in home visit and 7 online coaching sessions (up to 1 hour per session)
Complete questionnaires and an interview at the end of the study on your experience
You will receive a booklet on healthy eating and physical activity.

For more information or to enroll in the study, please contact Toni Lui, Research Coordinator at tlui@hollandbloorview.ca or 416-425-6220 x 3072.

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Participate in Research! Enhancing Self- Management for Individuals with Severe Disabilities Through Cloud Connected Technology:Tecla-e

Are you between the ages of 10 to 30 and use assistive technology (e,g., Buddy buttons or any other switch)? We invite you to participate in a research study that’s investigating a new technology called Tecla-e! Tecla-e is a cloud-connected assistive technology that gives individuals ability to control their smart devices and environment. If you choose to participate, the research team will visit your home once per week for a month. During these home visits, you will be asked to complete a series of questionnaires and will be provided with a Tecla-e so you can use it and share your feedback. The research team will set up the Tecla-e for you in your home, and provide you and your family with training on how to use it. For more information about the study please contact the Research Assistant, Natalie Besharat at 416-425-6220 @ Extension 6095

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MyStory Project is a research study that is taking place at McMaster University

The MyStory Project is a research study that is taking place at McMaster University. We are looking for adolescents and young adults (age 13-30) with Cerebral Palsy to help us study the physical health, mental health, and overall well-being of this population. The study consists of a series of questionnaires that can be completed from home. You will receive a $20 gift card for each set of questionnaires that you complete.

If you are interested in hearing more about the MyStory Project, please click on the link below to view the study flyer. You can also contact the Research Assistant, Sarah Hopmans, for more information, 905-525-9140 x27854,hopmansn@mcmaster.ca.

Thank you!

https://canchild.ca/system/tenon/assets/attachments/000/002/614/original/MyStory-Phase_3.pdf

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Calendar of Events

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