2007 has been quite a year! When I took over the reigns as President of CCHA, a great nucleus of committed people were already on board.
Patrick's Cardiac Key had just been introduced to the TCCCA and the first 200 were funded by CACHnet and the UHN undertook a one year study of this incredible device.
Then, thanks to Manulife Financial we were able to get our members 40 years or older guaranteed life insurance without a medical. This is the first time this has been offered to any patient with CHD in the world. Then our broker, Cheryl Solomon, found us low cost travel insurance which covers pre-existing conditions, and this is for members of any age. A Health and Dental plan were also developed for our members. These can all be accessed to our members through our website. It should be noted that Cheryl and Manulife have both offered to return a portion of commission and premiums to CCHA for research and education. This is incredible Corporate generosity....they offered, we did not ask for this.
Patrick had already taken a seat on the Provincial Panel studying Adult Congenital Heart Disease in Ontario. When I took over I replaced Patrick on the panel as the "Patient Representative" and I must say that the final report is full of facts that would shake your head. It should be, by now, in the hand of the Ministry of Health. Some of the facts in it are so shocking that I, personally will not let this report sit on some shelf, gathering dust, at Queen's Park. Then, due to correspondence with The Hon. Tony Clement, Min. of Health, I was invited to sit on the Federal Heart Health Strategy Committee as a patient representative for the CHD community. Due to short notice, I was out of the country but Shelagh Ross, our V.P., filled in for me. There were over 150 people at the first meeting; 15 or 10% were paid Heart and Stroke Foundation employees, and Shelagh was the only person who spoke out about the problems faced by patients with CHD and the CHD clinics. I later met with the committee Chair, Dr. Eldon Smith, and voiced my concerns that Congenital Heart Disease and the problems our community is facing was being pushed aside and overlooked by his committee. He assured me that it was not, and I can assure you that I will make sure that it is not overlooked by the committee.
I was honoured to have been asked to speak at CACHnet's annual dinner at the Canadian Cardiovascular Society's annual Convention in Quebec City. I talked about the accomplishments we had made in one year and where we would like to go. I was further honoured to have been asked to join CACHnet as the patient representative to their organization. During my stay in Quebec City I was able to meet with Sally Brown, CEO of the Heart and Stroke Foundation of Canada. She made it blatantly clear that the HSFC would not be giving us any funding as they are strictly a research, education, and advocacy organization and are not at all into funding patient care, education of Fellows at clinics nor any organization that promotes these goals. Needless to say I was shocked and very disappointed. The recent investigative report on the HSF Ontario in the Toronto Star and my subsequent letter to the editor has given us a lot of publicity....positive for us and very negative for the HSF.
Speaking of fundraising, it was sad that Shelagh's father passed away but most thoughtful that Shelagh and her family asked her dad's friends to donate money to CCHA. This raised over $10,000.00! Further the Bank of Montreal has confirmed that they will be sending us generous donation and I was just advised by Phil Watkins of the pharmaceutical company Actelion that we would receive a cheque by December 24th. What a great Christmas present!
We have just announced our new Medical Advisory Board which has been created to guide us and let us know where we might best focus our efforts. You can see the announcement on our website. The unbelievable quality of the people on this Board can only have a very positive effect on CCHA and our goal to help all patients with CHD across Canada. I received a congratulatory e mail from Dr. Ariane Marelli one of the eminent members of our MAB in which she said: "May we make great things happen for the amazing people we have the privilege of looking after every day." This simple statement speaks volumes of the dedication and caring of nthose who care for all of us on a day to day basis. They deserve our constant and continuing support and for as long as I am president of CCHA they will have it.
With all of the successes of the past year there are bigger challenges ahead. We must grow our membership and are desperate to have a passionate, committed membership Chair on our Board. The Mentoring and Teens in Transition are facing challenges which must be addressed and Dan's Heart2Heart Cardiac Camp needs our support more than ever. We are having a fundraising event sometime in April where we will be showing the award winning film "Something the Lord Made" which is the story of the famous Blalock-Tausig Shunt which those of us who have Tetralogy of Fallot would be most interested in. If you know of someone who would like to attend [date and ticket prices have not been set yet] please e mail me their names and addresses and we'll make sure that they get an invitation.
Before I sign off, I want to recognize the incredible work that Shelagh Ross, our V.P., has been doing. There is nobody more committed. She keeps me on the straight and narrow and has unbelievable ideas. It may sound like I'm doing a lot, but believe me, there is nobody working harder to keep our organization moving forward. Thank you Shelagh!
And with that may I close by wishing you all a very Merry Christmas, a Happy Channukah and a wonderful, safe holiday. May 2008 be healthy, happy, and prosperous for each of you.
Sincerest best wishes
John MacEachern
President
CCHA
