OFCP Informaction - Winter Issue

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In This Issue of InformAction:

1. Annual General Meeting Awards and Scholarships
2. Scarborough Theatre Guild
3. Camp Awakening
4. Parenting With a Disability Conference
5. Research Recruitment: Holland Bloorview Kids Rehabilitation Hospital Do you want to help us learn more about brainwave synchronizations among child/youth with disabilities, their parent, and music therapist?
6. Research Recruitment: Holland Bloorview Kids Rehabilitation Hospital Children and Teens in Charge of their Health
7. Research Recruitment: Holland Bloorview Kids Rehabilitation Hospital Enhancing Self- Management for Individuals with Severe Disabilities Through Cloud Connected Technology: Tecla-e
8. Research Recruitment: Ryerson University Midwifery Care in Ontario and Disability
9. Research Recruitment: CanChild MyStory Project
10. Research Recruitment: University of Toronto Seeking Participants for the National Physical Activity Measurement (NPAM) Study!

Annual General Meeting Awards and Scholarships

Nicholas Milojevic Scholarship Award is provided to a student with cerebral palsy and a current Lifetime Member of OFCP who is enrolled in an Ontario College or University and completed their first year of instruction. The recipient for this award for 2019 is Allison Headrick. Allison is a student at Queen’s University and has completed her first year of the five year concurrent Education program, pursuing a Bachelor of Arts and Bachelor of Education with aspirations of becoming a high school history teacher. She was active for two years with her local MPP’s Oakville Provincial Youth Advisory Committee, discussing issues and presenting solutions to Provincial Ministers and former Ontario Premier Kathleen Wynne. Allison wants to share her love of learning with others. As a person with a physical disability she is continuing to raise awareness about accessibility, in educational settings and beyond. It is truly a passion of hers. Congratulations Allison!

Eric Waldron Scholarship Award is provided to a student with cerebral palsy who is a current Lifetime Member of OFCP and who is enrolled in an Ontario College or University and who has completed his or her first year of instruction at University or College. The recipient for this award for 2019 is Megan Sherwin. Megan is a student entering her second year at the University of Waterloo for Recreation and Sport Business. Megan has faced many challenges growing up but has not let them stop her. ‘Some’ of Megan’s activities include playing soccer and basketball, taking piano lessons and playing the baritone and, for the past eleven years, has been a national level para-swimmer. She has her sights set on the 2020 Paralympic Games in Tokyo! In the future Megan hopes to have a long-term impact on a child with a disability, to help them know they can do something without having any doubt. Congratulations Megan!

The Therapy Scholarship Award is provided to a student who has completed his or her first year of instruction at an approved institution of higher learning in Ontario offering the following courses: Speech and Language, Physiotherapy and Occupational Therapy. The recipient of this award for 2019 is Connor Spence. Connor is in the Speech and Language Pathology program at Western University in London. He decided at a young age that he wanted to work with children and his commitment has never wavered. He chose speech-language pathology to help children find their voices. Connor has volunteered with many children with various exceptionalities such as autism, cerebral palsy, muscular dystrophy and developmental language disorders. Connor has had experiences as a camp volunteer, recreational therapy assistant and elementary school volunteer. He believes that every child deserves an opportunity to express themselves and intends to devote his career to helping children realize their full communicative potential. Congratulations Connor!

The Mona Winberg Achievement Award is presented to a person with cerebral palsy in recognition of his or her personal achievement of such caliber as to be a significant role model to all. The first recipient for 2019 is John Perry. John has been actively involved in raising awareness and fund raising in his community since the age of 5! He has participated in various fundraising events, with Independent Living Sudbury, baking and selling homemade cookies and giving proceeds to Ontario Track 3 ski association and served as co-chair for an annual fundraising event called Disc Ability 2017 – 2018. Each year John requests donations instead of gifts for his birthdays and donates the money to the Georgian Triangle Humane Society. Although he struggled, John completed a 3 km fundraiser walk for the Society called ‘Friends for Life’. John was awarded the Ontario Junior Citizen Award from the Lieutenant Governor of Ontario in March 2018, in recognition of all of his contributions and efforts to supporting various charitable causes. Congratulations John!

Our second recipient of the Mona Winberg Achievement Award for 2019 is Karanjot Singh Bhatia. Karanjot is a grade nine student at Harold M. Brathwaite Secondary School. In his reference letter, Karanjot’s principal shares that, “Karanjot has achieved great things to date, and I am sure the best is yet to come.” Karanjot has a strong belief in himself and possesses strong values and passion to help others. He wishes to pursue a career in business and technology. He has volunteered in many capacities, some of which are with ErinoakKids Hospital Brampton mentoring and coaching robotics, with the City of Mississauga in the 1 Million Trees Project, at the Seva food bank in Malton helping families in need of food and with the Guru Gobind Singh Children Foundation with activities organizing recreational trips for elderly and seniors. Karanjot believes we should always try to give back something to society and the environment and treat people with equality and love.
Congratulations Karanjot!

The OFCP Volunteer of Distinction Award is presented to an individual or group that has demonstrated significant volunteer support and dedication towards helping the Federation fulfill its pledge to help those with cerebral palsy. This year OFCP recognized Milica Milojevic and the Milojevic Family for their volunteer dedication, motivation and time given to others in her community. In 2014, Milica contacted OFCP with the hope and idea of establishing a scholarship award for students with cerebral palsy. This award would be in memory of her beloved nephew, Nicholas, who had passed away at the age of 22. Nicholas was a cherished member of the Milojevic family, who brought joy to others around him and shared a happy and very positive disposition. And so, the ‘Nicholas Milojevic Scholarship Award’ was established in 2015 and has been awarded every year since. It is awarded to a student with cerebral palsy who has completed their first year in an Ontario College or University and who reflects all of the positive attributes reflected in Nicholas’s character which include perseverance, positivity and strength.

Also established by the Milojevic family in 2016 was the first ‘Nicholas Milojevic Walk ‘N’ Roll-a- thon’ held at Professor Lake in Brampton. Milica and her family work tirelessly to ensure the success of this fundraising event for OFCP, the fourth held this past September, with all of the funds going to the Life Enriching Activity Fund. The LEAF fund provides greatly appreciated funding to our Members to enjoy activities and purchases of their choosing and that enrich their lives. Thank you Milica and the Milojevic Family!

Staff Award 2019 – Lynn Addae

The Ontario Federation for Cerebral Palsy is extremely proud and appreciative of the staff who have provided ongoing commitment, integrity and loyalty to our organization and our members.

To this end, it is our privilege to recognize and acknowledge Lynn Addae, Manager, Membership Services for twenty-five years of dedicated service to the OFCP. Lynn started with the OFCP in November 1994 in the role of Conference Coordinator for the International Conference on Health, Aging and Cerebral Palsy – an event that took over a year and a half to plan, promote and collaborate with health professionals from all over the world – with no internet or email!

For many years, in the position of Conference Coordinator / Program Assistant, Educational Services, Lynn arranged and coordinated the Annual OFCP Conferences that we all remember fondly! These were three day events, including meals, workshops, entertainment, attendant care and ending with the OFCP AGM. Lynn, in her always organized and efficient manner was always on top of everything to the last detail – as we always called her “the hostess with the mostess”. Lynn also organized and coordinated the annual Caregiver’s Conferences, Breaking the ICE Conferences for people who use Augmentative and Alternative Communication, as well as Embracing Your Wholeness Interactive Retreats and many various other workshops. Although not in her job description she was instrumental in development of our Human Resource Policies, executive assistant to the executive director and involved in fundraising activities such as Stationary Bike Races, OFCP Telethons and
today the Windsor for Cerebral Palsy Gala! The accomplishment that Lynn is most proud of is the compilation and editing of OFCP’s 60 th and 70 th Anniversary books! We’re proud of them too, Lynn! Today Lynn is our Membership Services Manager working with and supporting our ever increasing number of Members and Member Groups. Lynn’s passion and caring shines through each time she is in contact with our Members, their families, Member Groups and professionals as well as in the comradery that she shares with her co-workers. Congratulations Lynn! Your commitment and dedication has been recognized and acknowledged by all who know and work with you!

Scarborough Theatre Guild

OFCP is very pleased to inform you that we partnered with Scarborough Theatre Guild regarding the upcoming play titled, “The Cripple of Inishmaan” playing from January 10, 2020 to January 25, 2020.

For more information regarding the play, visit their website at www.theatrescarborough.com

OFCP is proud to offer:

1. Complimentary free tickets to our Members who require accessible seating. The majority of wheelchair accessible seats come with a free seat for a companion. Please note the ticket numbers are limited and will be provided on a first come first serve basis. We encourage you to contact our office as soon as possible to obtain your ticket, if you are interested in attending a performance. We will then forward your ticket by email or postal mail. You can contact us by email at info@ofcp.ca or by phone at 416 244 9686, ext. 221 or toll free 1 877 244 9686, ext. 221.

Available Dates and Times:
Saturday, January 11, 2020 8:00 p.m.
Sunday, January 12, 2020 2:00 p.m.
Friday, January 17, 2020 8:00 p.m.
Thursday, January 23, 2020 8:00 p.m.
Friday, January 24, 2020 8:00 p.m.
Saturday, January 25, 2020 2:00 p.m.

2. To Members who do not require an accessible seat, please contact Scarborough Theatre Guild directly to purchase your ticket, either by calling their box office at 416 267 9292 or online at www.theatrescarborough.com. We encourage you to take advantage of a special discounted rate of $4.00 off the regular ticket price if you use the code OFCPJAN4.

Camp Awakening

Camp Awakening offers accessible, adapted, and inclusive summer camp and leadership programs for youth with physical disabilities. For youth 9-24 Camp Awakening provides the opportunity to increase independence, make lasting friendships, and accomplish things they never thought possible!

https://campawakening.com/

Parenting With a Disability Conference

Despite the first snowfall of the season, a very successful Parenting With a Disability conference was held in Toronto yesterday, November 7th! The Strength Based Parenting Network (SPIN), a collective of community partners and agencies, brought together parents, and prospective parents with a disability. They shared their stories around the challenges they faced, how they overcame obstacles, and to honour the resilience and perseverance it took to become a successful parent. It was an empowering and eye-opening experience for many in attendance. OFCP is proud to be a member of the SPIN collective.

Research Recruitment

Research Institution: Holland Bloorview Kids Rehabilitation Hospital

Do you want to help us learn more about brainwave synchronizations among child/youth with disabilities, their parent, and music therapist?

What is this study about?
We would like to measure brainwaves synchrony with Electroencephalography (EEG) between child/youth with disabilities, their primary caregivers, and music therapist during music therapy and storytelling sessions. The results of this study may help to understand how children/youth with severe disabilities build empathy and communicate their needs with their caregivers and therapists.
We want to invite you and your child to be one of the families who participate.

Who can participate?
- Child/Youth
- Children/youth with any types of disabilities
- Age from 8 to 18 years old
- Parent (primary caregiver)
- Have a child who meets the above criteria
- No known history of neurological or psychological illness

What’s Involved?
- 4 music therapy sessions and 4 storytelling sessions (approximately 25 minutes per session)
- Electroencephalography (EEG) measurement and Video recording for all sessions
- Participants will receive a small token of appreciation, $10 per session and $5 for parking fee to thank for your time. Participants will also obtain the image for the result of EEG.

Interested in Participating?
If you are interested in participating in this study or have additional questions, please contact Kyurim Kang at Kyu.kang@hollandbloorview.ca / 416-425-6220 x3260 with your interest, and I will get back to you shortly. Contacting us does not obligate you or your child to participate in the study.

Research Institution: Holland Bloorview Kids Rehabilitation Hospital

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.

Research Institution: Bloorview Research Institute

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

Participate in Research!
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 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.
We are looking for participants who:

Are 10 ‐ 30 years old,
Have a motor impairment preventing them from using standard technology interfaces (e.g., mouse, keyboard, touch screen) due to Cerebral Palsy (GMFCS III or greater) or any other condition
Have the ability to use single switch scanning or the ability to use multiple switches
Have normal or corrected‐to‐normal vision
Are proficient in English

If you are interested to know more, please contact:
Holland Bloorview Kids Rehabilitation Hospital in Toronto
Natalie Besharat
nbesharat@hollandbloorview.ca
416-425-6220 ext. 6095
CanChild at McMaster University in Hamilton
Salma ElMansy
elmansys@mcmaster.ca
905‐525‐9140 ext. 26852
John McGivney Children’s Centre in Windsor
Mileva Vuletic
mileva.vuletic@jmccentre.ca
519‐252‐7281 ext. 232

Research Institution: Ryerson University

Midwifery Care in Ontario and Disability

This research project is a collaboration between the Midwifery Education Department and the School of Disability Studies at Ryerson as well as Centre for Independent Living Toronto and SpringTide Resource Ltd. The goals of the project are: 1) to better understand why more disabled people are not selecting midwifery care; 2) to better understand barriers experienced by disabled people during the childbearing year and 3) to develop resources for midwives and prospective clients.

The project is currently recruiting for focus groups. To participate you need to be living in Ontario and identify (or may be labelled) as disabled or Deaf who has been pregnant or given birth or who may get pregnant or give birth in the future. You can find more information about the project on it's website: https://midwiferyanddisability.wordpress.com/recruitment/

For more information contact the lead researcher, Nicole Bennett at nicole.bennett@ryerson.ca. Or you can contact Kim Collins the research coordinator at kimberlee.collins@ryerson.ca or call 416-979-5000 ext. 3037.

Research Institution: McMaster University/CanChild

MyStory Project

Most brain research for people with Cerebral Palsy (CP) focuses on early brain development. More research is needed to understand how the brain changes through the teenage years and into adulthood.

The MyStory Project will study physical health (fatigue and pain), mental health (anxiety and depression), chronic stress and overall well-being in adolescents and young adults with CP between the ages of 13-30.

For more information about the study please see the flyer below!

Research Institution: University of Toronto

Seeking Participants for the National Physical Activity Measurement (NPAM) Study!

Complete an online survey and receive a $10 gift card + the chance to receive a Fitbit! Researchers from the University of Toronto are seeking children and youth (ages 4 to 17 years) with disabilities and their parent to participate in the National Physical Activity Measurement (NPAM) Study. Parents will be asked to complete an online survey about their child's typical movement behaviours and psychological well-being, and all children and youth will be asked to wear a Fitbit for 30 days. Youth over the age of 10 are also eligible to receive 5 volunteer hours for participating in a telephone interview and/or online survey.

To learn more about this important research, contact the Research Coordinator, Ritu Sharma, at ri.sharma@mail.utoronto.ca.

To enroll in the study, please visit the online parent survey at https://is.gd/npamparentsurvey.

How you can help the OFCP

You can play an important role in helping the OFCP by either making a financial contribution to our organization and help support our programs and services, or contact Clothing Pick-Up for Cerebral Palsy Trust where they will pick up your used clothing and gently used household goods.

Here are some of the ways you can HELP Ontario Federation for Cerebral Palsy.

Special Fundraising Events - Participate in or sponsor an event
ECHOage - Plan a party that allows you and your guests to support the OFCP
Free Home Collection Service - Arrange your CP4CP home pick-up
CP4CP Clothing Donation Bin - Find a Donation Bin near you
Online Donation - Quick and easy way to donate to OFCP
In Memoriam Donation - Make a gift in memory of someone dear
Donation in Honour - Make a donation In Honour of someone special
Monthly Giving Program - Set up a regular monthly donation
Donate a Car Canada - Running, or not! Old or new! Donate it to OFCP
Planned Giving - A donation made at a future date through your will