Written by Chrisanne Campos
The Canadian Marfan Association’s 17th conference was hosted in Ottawa, Ontario at the University of Ottawa Heart Institute (UOHI) on September 26, 2015. The one day conference was a Patient & Family meeting to address their concerns through the most current information on the diagnosis, treatment and management of Marfan syndrome and related genetic aortic disorders (GADs).
The conference marked the launch of The Genetic Aortic Disorders Association (GADA) Canada. The Canadian Marfan Association (CMA) has become GADA Canada, with the new mission to promote knowledge and extend support to all other rare GADs that have equal or greater fatality risks than Marfan syndrome.
The morning of the Patient & Family Conference consisted of presentations from specialists on topics including; the diagnostic criteria for Marfan and LDS, description of other gene mutations causing related GADs , advances in aortic surgery, post-operative management and care, modern ophthalmological treatment options for patients with GADs, critical role of multidisciplinary GAD Clinics and coping with psycho-social aspects of living with GADs. In addition, extremely interesting research showing the benefits of mild exercise on aortic aneurysm in Marfan mouse models was explained. We look forward to such promising research work that could result in patients with GADs having a better lifestyle.
The main feature of the conference this year was English & French panel discussions. This was a big success with excellent participation from the audience. This gave an opportunity for everyone attending to share their concerns and knowledge. Numerous questions were asked and answers provided by the panel of health and medical experts to the great satisfaction of the participants. The feedback we received from attendees was that they enjoyed the open discussion with the experts.
The Ottawa/Gatineau Marfan Peer Support group hosted a youth program that ran all-day alongside the main program. This was a fun and learning event for the kids, who absolutely enjoyed the activities through the entire day, while their parents participated in the main program with the specialists.
'Suzanne Drouin', member of the Ottawa/Gatineau Marfan Peer Support group and ex-President of the CMA (now GADA Canada) was awarded the 'Elizabeth McHenry Volunteer Award' to honor her years of tireless dedication to support the mission of the organization.
Joanne Morin, an advanced practical nurse who helps manage the Adult Heart Clinic at the UOHI, known to patients for her clinical expertise, her empathy and deep compassion, and nominated by Liz Martin on behalf of the Ottawa/Gatineau Marfan Peer Support Group for the 2015 Best Health Nurse Excellence Awards was acknowledged for being one of three national recipients to receive the award. GADA Canada sincerely thanks Joanne for donating this award amount towards the programs of the organization.
We are extremely grateful to the members who attended and to the specialists for making themselves available to make this conference a successful, beneficial and memorable event! We are especially thankful to the members of the Ottawa/Gatineau Marfan Peer Support group who volunteered their time and efforts towards hosting the youth program and helping with the organization of conference. GADA Canada sincerely thanks Anne Van Dam for assisting us with promoting and organising the conference on site on behalf of the UOHI. We humbly thank our sponsors and all those who donated, without the support it would be impossible for GADA Canada to host such an event. We continue to look forward to your support as we grow to serve our Canadian community.
Please click on the links below to access the conference program and two very important presentations from the conference.
Critical Role of TAC/GAD Clinics in the Management of Marfan and Other GAD
Leslie Raffin, Nurse Clinician, Cardiology, BC Children's Hospital, Vancouver BC
Psychosocial Aspects of Living with MFS and other GAD
Joanne Morin, RN(EC), University of Ottawa Heart Institute, Ontario
Chrisanne Campos, Ph.D., Executive Director, GADA Canada
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