Dear Friends of the Brain Injury Community,

As a member of the NHCC Brain (Brain Injury) Community, you are receiving this invitation to participate in a brief survey for the Native Women’s Association of Canada’s Understanding from Within project. “Understanding from Within” explores how Aboriginal women, their families and communities are impacted by neurological conditions (brain injury).

As part of our work, we are gathering information about existing neurological health services for Aboriginal peoples. This short survey is aimed at identifying services or programs specifically for Aboriginal service users – including First Nations, Métis and Inuit peoples who are experiencing (or a caregiver of someone experiencing) any of the following conditions:

• Dementia (Including Wernicke Korsakoff syndrome, HIV dementia, and dementia subsequent to stroke or brain injury)
• Alzheimer’s disease
• Cerebral Palsy
• ALS (Lou Gehrig’s disease)
• Multiple Sclerosis
• Huntington’s Disease
• Parkinson’s Disease
• Spina Bifida
• Tourette Syndrome
• Brain tumours
• Neurotrauma (acquired brain injury (ABI), spinal cord injuries)
• Epilepsy

This project is part of the National Population Health Study of Neurological Conditions, a collaboration between the Neurological Health Charities of Canada (Brain Injury Association of Canada) and the Public Health Agency of Canada. The study is being conducted by the Native Women’s Association of Canada in association with Dr. Carrie Bourassa, First Nations University of Canada.

The survey will take approximately 15-30 minutes to complete. You may choose to complete the survey online at https://www.surveymonkey.com/s/D5SXMVH. If you prefer to receive a paper copy of the survey or to complete the survey by telephone, we are happy to work with you to make such arrangements.

If you are unable to access this link, or should you have any questions concerning the Understanding from Within study, please contact the Research Coordinator, Melissa Blind at the Native Women’s Association of Canada by telephone (613-565-3026) or email (mblind@nwac.ca).

Thank you for your participation,
Sincerely,
Melissa

Share your voice! Canadian adults living with epilepsy are invited to participate in a Canada-wide survey: The Impact of Epilepsy on Canadians.

This short questionnaire explores how epilepsy impacts quality of life, health and access to care and treatment.

Conducted by Leger Marketing, the survey adheres to market research codes of conduct, which guarantees confidentiality and anonymity. Click here https://legerweb.com/impactsofepilepsy to start the survey.

Please complete the survey by September 19, 2011 to have your voice heard.

An online forum for caregivers to share their stories about caregiving and getting support has been created as part of a research study funded by Echo: Improving Women’s Health in Ontario. We are hoping that you can help us spread the word about this unique forum by:

-Posting or forwarding the Caregivers Stories Poster
-Including the information below on your website or newsletters, and/or
-Personal communications with caregivers.
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Today, the Canadian Medical Association launched a new website. We are using this website to host an online national dialogue with Canadians, on the future of health care in Canada.

On the site we pose three questions: Read the rest of this entry »

Dear Friends:

I am pleased to announce that the Canadian Medical Association (CMA) today launched a national dialogue to engage Canadians on the future of our health care system. The first phase of the initiative is an online consultation at healthcaretransformation.ca.
Read the rest of this entry »

reachAbility, a charitable organization committed to creating an even playing field for persons with all types of disability, asks Canadians with disabilities to share their experiences with employment in “The First Person Project,” a book being published in 2010.

Whether you live with a physical, cognitive, visual, hearing, mental health or invisible disability, no matter where you are in your career, we want your stories of challenges, successes, stigma, accessibility, disclosure and empowerment, in your own voice and in your own way. Please send us your nonfiction contribution of no more than 1500 words; we encourage a variety of formats, from prose and poetry to art, photography, cartoons and more.

Our goal is to break down the real barriers to employment (stigma, fear and misunderstanding), to spread the “Equal (fair and equitable) Not Special” message, and to increase awareness of the advantages and achievability of inclusion, with strategies and solutions for the future. We’re interested in particular incidents and/or your overall experience. Topics you could focus on, but are not limited to, include:

1. How has your disability affected your getting a job? How do you feel about disclosure? If you have disclosed your disability in a job interview, what happened?
2. Have you felt accepted or excluded by management and co-workers?
3. What sort of barriers have you encountered at work? How have you dealt with them?
4. If your disability or issues surrounding it arose while you were employed, did things change at work, and if so, how? Were accommodations made? Did you leave work?
5. Has your disability influenced your job choices? Have you changed careers?

The deadline for submissions is April 1, 2010.*

*Please include your name, age, sex, disability and location. Your piece may appear anonymously at your request. Submission is not a guarantee of publication. Submissions are considered donations and are not compensated. We reserve the right to edit.

For more information or to make a submission, please contact:
Karen Janik, First Person Project Editor
editor@reachability.org
Tel/TTY: (902) 429-5878 | Toll Free/TTY: 1 (866) 429-5878
6389 Coburg Road, Suite 200, Halifax, Nova Scotia, B3H 2A5

We are a research group based at the University of Birmingham in the U.K. We are interested in how family members cope when a relative has had a brain injury, such as a head injury or a stroke. One of our interests relates to the expectations family members have for the recovery of their relative.

To look at this issue properly, we need to develop a questionnaire that assesses the expectations of the family member. We have developed a first version on the basis of a previous study we did about expectations; direct consultation with some family carers; and an existing questionnaire. We now need to evaluate this version of the questionnaire by getting a large number of family members to fill it in.

We would be very grateful if you could take some time to complete the questionnaire. The questionnaire is quite long, but your answers will help us to improve the questionnaire by, for example, reducing its length.

The questionnaire is meant for people who have (or expect to have in the future) a significant caring role for a family member who has had a brain injury within the last 12 months. If you do not fall into this category, thank you for your time but please do not submit your answers to us.

Please be assured that your confidentiality is guaranteed. We will not ask you to give your name or any other details that might make it easy to identify you. No one but ourselves will see the individual answers that you give. Because we won’t ask for your name, we will be unable to identify the person who has given these answers.

If you do not feel happy about answering the questions, please do not continue with the survey.

If the questionnaire raises concerns for you, you may contact your local Headway, Stroke Association or other similar organization, who should be able to address these concerns. You may also contact us, Andrew Brennan and Gerry Riley, Clinical Psychologists, via email at Andrew.Brennan@sbpct.nhs.uk or G.A.Riley@bham.ac.uk. We would also welcome your views if you have any general observations about the questionnaire.

If you would like a summary of the final research report, please send us an e-mail to request this.

Survey Link:
https://www.surveymonkey.com/s.aspx?sm=BAkQOkS8ILAgJBrWBfT_2few_3d_3d

Dr. Andrew Brennan, Clinical Psychologist
Tel 0121 442 3448/3303

In Canada, there is a lack of information about the extent and impact of neurological conditions (brain and nervous system diseases, disorders, conditions and injuries). This makes it difficult to plan effective policy, programs and investments. Neurological Health Charities Canada (NHCC) is committed to working towards filling this gap in information, and we are asking you to take a few minutes to express your views on what type of information you feel would be important to collect.

NHCC is a collective of organizations that represent people with chronic, often progressive, brain and nervous system diseases, disorders and injuries in Canada. Collaborating with the Public Health Agency of Canada (PHAC) and the Canadian Institutes of Health Research (CIHR), we are considering what information is needed about the frequency of occurrence and the impact of diseases, disorders and injuries of the brain and nervous system. Your input is very important to us.

Complete the Consultation on Neurological Conditions in Canada Survey. This survey will be accessible on-line until February 27, 2009. Thank you for your participation!