We agreed that the membership fee will be $25.00 year to access travel insurance, life insurance, health and dental (if over 40 years old), and to recieve regular CCHA e-newsletter updates.
March 7, 2007
February 7, 2007
Heart2Heart Cardiac Camp - the first camp of its kind in Canada to offer teens an educational camping experience - and CCHA have joined forces. The camp will be running in Ontario and Quebec over the Labour Day weekend. To find out more, go to www.heart2heartcardiaccamp.ca.
We discussed developing a code of ethics for purposes of legitimacy and protection for the group.
There was agreement that the CCHA should go national since there is interest from groups in BC and Quebec.
The Toronto Clinic has expressed interest in a “CCHA Fellowship” to train Cardiologists, specifically, in Congenital Heart Defect problems. Dr Oeschlin suggested the money go to funding a Canadian fellowship since the clinic is very short of staffed and this will secure a position for a Canadian doctor.
A draft of the CHD Awareness Day email campaign was sent around the group. Once the logistics have been worked out it will be emailed to all members on Feb 13.
This year the conference will be held at The Ryerson International Center - main conference is in the auditorium. Break out rooms will be available and a boxed lunch will be provided. See the posting on the home page for more information.
Membership dues were discussed and will be decided based on similar groups' fees.
KidPaces, the advocacy group at the Sick Kids Hospital is hosting their official launch on Saturday Feb. 10 from 11:00-1:30 p.m. CCHA will be there to discuss potential mentoring programs.
The CCHA website will be upgraded to allow people to pay their membership fees online and access the CCHA-Manulife insurance program.
The CCHA now has an address! CCHA, C4-233 Cross Avenue, Suite 233, Oakville, ON L6J 2W9.
The CCHA has been asked to contribute regular updates to the Toronto Clinic's newsletter The Beat. We have also been invited to submit a short article to the e-newsletter of the International Society for Adult Congenital Cardiac Diseases - made up of professionals in the field of adult CHD.
The CardiacKey pilot project should be rolled out in the next month. It was delayed slightly due to a hospital ethics review.
November 16, 2006
CCHA provided an update on the incorporation and charitable status. The incorporation papers have been signed and we are now just waiting for the approval process to be completed, which should be in just a few weeks. Charitable status will follow the incorporation, but if someone wants to donate to CCHA in the meantime, they can send a donation to CACH and specify that it is for CCHA. CACH will then issue a tax receipt and hold the money in trust until the CCHA has a bank account established. There is a link on the website for donations.
The Manulife-CCHA insurance package has been approved and will be available soon, through our website, to all paid CCHA members who are 40 years and older. The details are as follows:
GUARANTEED ISSUE LIFE INSURANCE (With no medical)
- Available to CCHA members and their families
- For people between 40 - 75 years old.
- Coverage from $5,000 - $25,000
- Pays five times the benefit in the event of accidental death.
COMPREHENSIVE HEALTH & DENTAL (With no medical)
The CardiacKey pilot project has begun, and J the TGH congenital cardiac clinic will be issuing the keys to the TGH clinic patients who signed up for one at the spring conference. Since this is a TGH clinic-based project, patients who are seen at other hospital clinics are not eligible for the pilot project. Once the project is over, and any modifications to the key have been made, we will make it available to any CHD patient that is a member of CCHA (there will be a small membership fee).
Our draft brochure will be revised to include mention of the insurance package and will be translated into French.
One of our aims is to spread awareness about CCHA throughout the medical community. PA agreed to head up a team to collect a list of all cardiologists in Ontario so we can contact them re. making our brochures available in their offices.
Another of our aims is to begin outreach efforts to establish greater ties with key groups in order to raise the profile of CHD patients and their needs. Some of the groups that were identified are: the Heart & Stroke Foundation, the Ministry of Health, and our US counterpart The ACHA.
DR gave an overview of the Heart 2 Heart Cardiac Camp. The aim is to have the camp up and running for a week next summer, and will cater to congenital heart patients who are 15 years and older. Adult patients will participate as councillors and they and the patients will be selected via a screening process. The camp will serve patients who have mild-to-moderate CHD.
A consultant with the Pediatric Cardiac Network and Cardiac Care Network – a government group set up to plan for the provision of CHD services in Ontario – was invited to the meeting. She is in charge of delivering an assessment of the CHD population need. She’ll do this by defining the current resources available to adult and pediatric programs and services, defining the resources needed to support future requirements, consulting with appropriate groups to identify the gaps and develop strategies to deliver improved services, and plan for the growing need for patient support and services.
July 13, 2006
The meeting was held at the Toronto General Hospital, Congenital Cardic Clinic Conference Room at 7:00pm.
A draft brochure was developed and will be used to introduce the CCHA and motivate people to visit our website and sign-up as members. Everyone agreed that the content of the brochure was appropriate and properly reflects the message that we wish to convey.
A rep from Creative Planning Financial Group presented a proposed insurance and benefits package that she has developed for the CCHA. The plan is underwritten by Manulife Financial and includes the following highlights:
GUARANTEED ISSUE LIFE INSURANCE (With no medical)
- Available to CCHA members and their families
- For people between 40 - 75 years old.
- Coverage from $5,000 - $25,000
- Pays five times the benefit in the event of accidental death.
COMPREHENSIVE HEALTH & DENTAL (With no medical)
TRAVEL INSURANCE (With no medical)
- For trips up to 18 days long
Further details will be available soon so stay tuned!
June 15, 2006
The meeting was held at the Toronto General Hospital, Congenital Cardic Clinic Conference Room at 7:00pm.
· The process for getting CCHA non-profit status is underway and should be completed in a few weeks.
· CCHA has received a generous donation from a member, which will, over the next few weeks, help out with brochure printing and website hosting expenses.
· Since we do not yet have our own charitable status, anyone who wishes to donate can do so by writing a cheque out to CACH (Canadian Adult Congenital Heart Network) and write "CCHA" in the subject line so it goes into the CCHA account. Cheques can be mailed to:
BB&C
6835 Century Avenue, 2nd floor
Mississauga ON L5N 2L2
Attention: Laurie Andrews
Donors will be issued a charitable tax receipt from CACH.
There is now a "Donations" link on the website with instructions on how to donate.
· A health insurance rep will be making a presentation at our next meeting, on July 13 (7 p.m. same place). She may be able to offer a health and dental plan to our members, and a percentage may be given back to our organization for research. This sounds very promising, and I urge anyone who is interested in obtaining insurance to attend the meeting to listen and ask questions.
· The CardiacKey pilot project will be starting in July pending approval by the TGH review board. In order for the TGH clinic staff to spend time on the project, it has to be approved as a viable research project. So, over the next year we plan to issue Keys to those who have requested one and the hospital will follow-up at a six-month interval to find out how the Key was used, if it was useful, etc. CCHA and hospital staff will be meeting the week of the 19th to discuss logistics (how to get the info on the keys in the most efficient way). Final pricing of the program is still under discussion.
· It was suggested that the CCHA website should have a section where we could read about each other's experiences. Maybe a FAQ, with a "Words of Wisdom" section with information from an expert - psychologist, cardiologist, nurse practitioner, etc. We will work on developing this initiative.
· Re. Fundraising some of the suggestions included a silent auction/casino night, golf tournament, winter carnival, and bowling tournament. We want an event that can include children with CHD so we can start making alliances with the Sick Kids group KidPaces (formerly CHASE), to have our group representing all Canadian CHD patients.
Agenda for next meeting will include:
· Life insurance guest speaker
· Discussing draft brochure
· Discussing media message
· Fundraising plan
· Questionnaire - what do you want from CCHA?
May 31, 2006
The meeting was held at the Toronto General Hospital on May 31, 2006 at 7:00pm.
The group discussed the need to engage in awareness-raising activities.
Three main areas of focus were identified:
- Outreach activities aimed at other CHD patients and their families and friends.
- Outreach activities aimed at external organizations such as the Ontario Ministry of Health and Long Term Care and the Heart & Stroke Foundation.
- Publicity activities aimed at increasing the public profile of CHD and of the CCHA
The group discussed the need to get properly incorporated and registered as a not-for-profit or charitable organization.
The group discussed the need for media monitoring.
We need to be on the lookout for any news items that relate to CHD so that we can share it with the group.
CardiacKey Initiative
- A pilot project involving 250 patients from the Toronto Clinic is about to begin.
- The logistics (including the cost of the CardiacKeys) will be worked out during the month of June.
- The anticipated timing is that participants will receive their Keys beginning in July.
- The medical information on the CardiacKeys will be loaded and maintained by the Toronto Clinic.
- The CCHA will provide volunteers to assist, where necessary, in the task of loading this information. Volunteers will need to attend a short training session (required by the Toronto General Hospital for ALL volunteers.)
- The Toronto Clinic will be following up with all participants at the six-month mark to see how effective the CardiacKeys have been. This is going to be part of a research project undertaken by the Clinic.
