Meeting Minutes
Sept 3, 2008
Administration Issues
Avi will stay on as Legal Counsel
Annual Audit
Audit has been done and we have passed the audit
Transition Meeting with Sick Kids
Sick Kids Family Day meeting has been postponed until later in September
Cardiac Key
Discussions on the future of the CardiacKey – how to make it available to all CHD patients in
Adult Retreat
The camp weekend will likely be in June or Sept and approximately 50 patients will be invited to attend
The camp will be advertised in the various hospital publications
Next adult retreat planning meeting is Sept 17
Conference committee
It has been suggested that the conference not be held on Mother’s Day (may be too late for next conference) and that there should some sort of a social event after the conference. I.E boat cruise. Will
Trade marking our Logo, Name and Slogan
The lawyers have done all the searches; they will go forward with trade marking CCHA name, logo and slogan
Volunteers needed for CCS convention, October 25-29
We will work on information and give-aways for our booth at the conference
New Business
Investigating a plan for research in CHD so that the Heart and Stroke can look at identifying and funding new proposals for research. The big issue is not that Heart and Stroke does not want to fund CHD research but the are not receiving the proposals for CHD research
Next meeting is Wednesday, Oct 1, 2008
July 23, 2008
Setting up National Organization
Chapter heads will be discussing setting up a chapter of CCHA in
Discussion of whether other chapters of CCHA to go under our umbrella or do they go on their own. It was agreed by the group to wait and get an opinion by a lawyer
Transition meetings with Sick
The last meeting was canceled has been rescheduled for the first week of September 2008.
Prices on Lapel Pins and Cardiac Keys
We have sourced gotten prices on the lapel pin and a provider. We will look into the various different styles offered.
Conference committee
The clinic has asked that CCHA to help run the conference next year. There is to be a meeting in early September 2008
Update on HSFO funding
There appears to be some interested in doing CHD research but they are not sure how this is going to take shape. Bottom line H &S has recognized that CHD issues are under funded and are looking at working with us.
International scene
John was invited to
Next Meeting
It has been agreed up that our meeting will be on first Wednesday of every month - September 3, 2008
June 18, 2008
Teleconferencing phone system
Setting up CCHA as a National Organization
Discussed going national. Arrangements are being made to start a CCHA chapter in
Annual auditing needs to be done and this will be taken care of ASAP.
Transition meetings with Sick Kids
Next meeting was scheduled for July 10, 2008 but got postponed until some time in September.
Adult Retreat
CCHA is looking into an adult retreat for CHD patients.
John’s Speech to The International ACHD Symposium
Letter to Hon. George Smitherman
Follow-up is needed re. the Ontario CD report now that Smitherman is no longer
Committee to be formed to run next year’s conference:
Costs; $22,000.00
Discussed social events such as a
Committee members are needed to help plan organize
Other business
· Walk and roll and Sick Kids is having a walk-a-thon
· CCHA will donate to Windsor-Essex group re. transplant patient
· Need to make changes to the CCHA charter and we are still waiting on charitable status
· Annual general meeting should be done at the annual conference.
· The Lion’s Club would like to donate to CCHA annually
Next meeting: July 23, 2008 7:00pm
April 3, 2008
Film Night Recap
Great night with total over $10000.00. thanks to Medtronic for helping to cover the cost of the catering. A separate fund will be set up specifially for the fellowship.
Future Events
We spoke with an event planner, who will work with us to raise public awareness and help lobby the government.
ACHA Conference in
Shelagh and John have been invited to attend the conference, which is a gathering of over 200 adult
CCHA Patient Conference
We will have a booth at the conferece where patients will ahve the opportunity to identify issues and concerns they would like CCHA to address. Educational material will be available.
Press Release
We will be sending out a press release for the Congenital Patient Conference. As well, an article on CCHA recent highlights has been submitted to CACHnet's The Beat.
Cancellation of Membership Fee
The membership fee will be discontinued and we will focus our efforts instead on fundraining and donations. We feel that the fees are inhibiting some new members.
ISACCD Conference
On June 4th John will be presenting a patient’s perspective of congenital heart disease.
International Task Force
John has been invited to get an international task force on Congenital Heart Disease.
Canadian Cardiovascular Society
Oct 25-
Other Business
-Cardiac Key project is still under way and they are complying the results
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February 21, 2008
Heart & Stroke have offered to help us with the advocacy role at Queen’s Park with regard to the Ontario Government CHD Report which has been received by the Ministry.
Charitable status
We finally received a file number and it will take another 6 months before a person is assigned and another 4 months.
Film Night
Everyone has tickets the instructions are provided. Jennifer will be in charge of the door prizes.
Cash bar – beer and wine
Reception in Rotunda - Hollywood theatre
Sick Kids will be selling tickets for parents and children of 15 years and older.
Bill – To Make Feb 14 Congenital Heart Day
To bring awareness to Congenital Patients, Taryn has spoken with a local MP who will look into this issue. John also contacted his MPP and they will also be looking into it.
Next Meetings
The Toronto Star letter to the editor brought awareness to our group and was met very enthusiastically and favourably by CHD patients and supporters.
With regard to the soon-to-be-released Ministry report, the group discussed ways in which advocacy groups like ours find ways and means of exposure for its contents.
Movie Night…Fundraiser
Insurance Issues
Year-end Financial Statements
AG checked into issue of VISA and found that it would be expensive at this stage and will explore other options.
Financial Grant from BMO
Next Meeting -
November 7 2007
Canadian Cardiovascular society’s annual conference in
JM spoke at the conference and outlined CCHA goals and achievements. It was requested that CACHnet support CCHA in reaching out to CHD patients across
The delegates at the conference appeared to be very appreciative of John and CCHA’s efforts.
Heart and Stroke Foundation
JM met with the CEO from Heart and Stroke foundation. He was told that Heart and Stroke are strictly about funding education and research. JM provided Sally with two studies which she was interested in pursuing. Both studies would require a congenital cardiac specialist input.
Sally was very impressed with the cardiac key and wanted to follow up about the conclusion of the pilot project.
Fundraising
Medtronic the company has indicated that they would be donating to CCHA.
CCHA is still waiting to see if BMO will be donating funds.
JI is working on a couple of fundraising ideas we need our charitable status and an easier way to pay on line.
AG will look into adding an icon for VISA or Master card instead of using paypal.
CATCHNET
JM was asked to join CATCHNET’s board.
Canadian Health Network
JM attended the Canadian Health Network Seminar. The Canadian Health Network has a free website a link to CCHA in on their website.
CCHA Website
SR has added a chat forum on our website with a link on the home page. Everyone is urged to visit the forum and to get involved.
Congenital heart disease panel final report
The final report from this panel is done and will be presented to the provincial council on November 22, 2007. One it has been reviewed the report will be sent to the Ministry of Health. Twelve health care professionals sat in on the committee and have produced this document.
JI asked if any of us has spoken with Smithermen the Ontario Health Minister. JM will try set up a meeting directly to Smithermen.
Heart defect society of
They have joined CCHA as an affiliate member and are very active and successful in their own fundraising efforts.
Heart 2 Heart
Camp is still waiting further information from Sick Kids to determine whether the camp will be going forward or not.
Movie night fundraiser
Ryerson theatre,
Creating a medical advisory board
CCHA is in the process of setting up a Medical Advisory Board made up of CHD doctors across
October 9, 2007
Attendance… commitment
We would like to expand the executive committee to include the people who have been attending the meeting on a regular basis. For the future of CCHA and to move forward at the national level we need a more cohesive that is dedicated to CCHA.
We need a techi to help with the website.
CHHS Committee
150 people at the meeting and SR spoke on behalf of congenital patients. JM met with the head of Cardiology at
Speaking at CACHnet’s Annual meeting
JM will be speaking to the congenital heart physicians across
John has a Breakfast meeting with the CEO of The Heart and Stoke foundation in
Fundraising
This years CCHA’s fundraising goal will be to fund a fellow for the
- Acetlion (drug company) doing a study on CHD patients. They had agreed to donate $20.00 per patient.
- New Fundraising Venture:
Night at the Movies for sick kids and adult patients
This is an opportunity to link with Sick Kids. Invite the heart2 heart group .
- For anyone who has a friend or fam
