Brief updates for May 2016
Peer support groups are active. At this time, the focus has been on a Facebook group (“Canadian VHL Warriors”) of 25 members -VHL patients and some family members; 3 monthly group conference calls; and live group chats. Individual calls and email support: there has been some use of the toll-free system which included 3 in/outbound calls –with a trained peer volunteer. Eventually, we would like to expand to a general online forum and train some more peers.
*** If you’re not on Facebook or would like to participate in a forum or toll-free group call, just email or call ***
Henry: (647) 272-4747 or 1-800-258-0904 or Email
CRA Charities Directorate application for registering a charity under Income Tax Act is in process. Here is an excerpt of the letter with draft purpose and matching activities:
… Thank you for providing your helpful feedback on our application to become a registered charity. Accordingly, we have made suggested revisions (and significant refinements) to show that: we have been established exclusively for charitable purposes; our description of charitable activity further these purposes; and we have addressed your other concerns.
Suggested revision for Purposes
Eliminate the 4 purposes, which are broad and vague, from our initial application and choose just one “promotion of health” purpose: To promote the health of VHL (von Hippel-Lindau Syndrome) patients in Canada by providing peer group support.
Suggested revision for Activities (in support of Purposes)
Research suggests that peer group support for chronic illness improves patient health and wellness. Also, patients who are more involved in their health care tend to get improved outcomes and satisfaction. Finally, VHL Canada believes that patient peer support offers motivation, optimism, and hope.
To reach out to our rare disease population in a vast country, VHL Canada will provide peer support groups in various formats, free and at flexible times, for patients and others affected by VHL in Canada. 1) A lot of group support will be hosted online through social media, weekly live group chats, email, and forums. 2) There will be groups on conference calls, monthly, that are accessed toll-free. Video calls are optional. 3) In-person meetings may occur locally based on interest and availability of peer volunteers.
1-2 trained peer volunteers will schedule and moderate the groups to enhance the mutual support process of peer groups. We anticipate that there will be at least a few people present for weekly and monthly groups from various regions/ provinces. Incidentally, group members may enhance their knowledge on a range of issues through informal sharing.
Peer support groups will be part of a larger strategy which includes: a) a nationwide toll-free helpline that will be an intake or gateway to peer group support programs (in addition to providing immediate individual help). B) Annual phone check-ins to update contact information will also gather group and general feedback.
(Insert section: how will organization fundraise?)
Updates continued…
3rd Annual Holiday Fundraiser confirmed for December 3, 2016 and venue for the 3rd straight year will be The Cat Pub and Eatery in Toronto– full restaurant and bar. Entertainment (e.g. band) to be confirmed. Corporate donations received so far from Steam Whistle Brewery and MLSE - Maple Leaf Sports and Entertainment (Raptors). Proceeds will go to VHL Canada.
Canadian Institutes of Health Research – CIHR has registered us in an international rare disease database - as the patient group organization for VHL in Canada. More info on CIHR
Memberships 2016-17 with Canadian Organization of Rare Diseases–CORD and Canadian Association of Psychosocial Oncology -CAPO
Wellspring –leading centre for cancer patients that offers wellness/psychosocial services in various national locations – has listed us in their Toronto Community Links page
Interesting articles from our Resources-Archive page
Through the looking glass: an exploratory study of the lived experiences and unmet needs of families affected by Von Hippel–Lindau disease (European Journal of Human Genetics)
- "Despite well-established protocols for the medical management of Von Hippel–Lindau disease (VHL), families affected by this rare tumour syndrome continue to face numerous psychological, social, and practical challenges..."
Wading Through the Web: A Health Toolkit (It's for everyone! )
- A guide for evaluating research
For more articles
Please check out the website for interesting info and a new look: www.vhlcan.ca
On Facebook:
Join us at Canadian VHL Warriors Group
Like us at our public page
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