Following the close of the election nomination period, we would like to introduce the incoming Vice President North American Region, Deirdre Floyd.
Deirdre will complete the current term of IBE Regional Vice Presidents, which will come to a close at the time of the IBE General Assembly in 2023.
I was diagnosed with epilepsy when I was 14 years old and for many years my seizures were relatively controlled. I worked at many different jobs although my true background is in the arts as a production assistant and make-up artist. Over 35 years ago my seizures changed significantly and I had to stop working. My epilepsy specialist suggested I contact the Epilepsy Association of the Maritimes to do volunteer work.
Since then, I’ve held many different positions including Fundraising Chair, Vice Chair, and President of the local agency.
I have done a significant amount of advocacy work at the local and national levels, including chairing the Purple Day for Epilepsy Campaign that was founded by Cassidy Megan in Nova Scotia, and serving as President of the Canadian Epilepsy Alliance. Until recently I served on the board of the Canadian League Against Epilepsy representing the Canadian Epilepsy Alliance (CEA). Currently I serve as the voting representative for Canada on the board of the International Bureau for Epilepsy.
I’ve received many awards for my volunteer service over the years from our provincial government as well as federal recognition by my Member of Parliament. I received the Nova Scotia “Women of Excellence” award, which recognizes women who have helped people within their community achieve successful outcomes for charity work.
I’ve done many speaking engagements with media as well as presentations nationally for the Canadian League Against Epilepsy, and shared our national accomplishments at IBE conferences that have been held in Canada. On occasion I’ve done presentations about the Canadian Epilepsy Alliance at AES meetings as well.
I co-chaired the Canadian League Against Epilepsy Medical Therapeutics Committee, which required a significant amount of advocacy work with Health Canada as well as liaising with pharmaceutical companies and other national groups to advocate for changes to government policies. Clients heavily depend on having their medications readily available, so short notice of interruption of manufacturing these medications creates high stress levels for them. Through this initiative we were able to get Health Canada to introduce a policy that mandatory reporting of drug shortages was required by the pharmaceutical companies.
Currently I serve on the Priority Setting Partnership committee that is spearheaded by the Ontario Brain Institute’s Research Program (EpLink), and funded by the James Lind Alliance in the UK. The purpose was to set up a series of surveys to be shared with Health Care professionals, people living with epilepsy, caregivers and staff of epilepsy agencies in Canada. The surveys were designed to provide an opportunity for those living with epilepsy, caregivers and health care professionals to have their say in establishing the direction of epilepsy research for the next ten years. In serving on the Priority Setting Partnership Steering Group, I used my lived experience of epilepsy and the knowledge I had in helping other clients with advocacy and education in order to provide valuable input around the overall process and outcomes for this project.I look forward to serving as Vice President North America with the opportunity to bring new ideas and goals to our region.
It’s been my own personal experience that the work of the IBE hasn’t been promoted enough within our own region to the clients we represent. A common problem is that the average individual and the countries involved really don’t have the knowledge of the work of the IBE does and its relation to the countries represented within the Global picture. I spend a lot of time explaining how we are all connected as many individuals don’t really understand the Global efforts being done to further advance the work of the IBE. The IBE does valuable work to help those living with epilepsy internationally and should receive the recognition of the population we represent.I believe that working with other partners within our region will help determine what projects really need attention and that fit the overall mandate of the IBE. While I understand the needs within Canada, I believe a team effort to determine goals and objectives could really help set the priorities that would best serve our region. I welcome the opportunity to represent the North American Regional Committee as Vice President, and feel that through the years of my advocacy with government at the national level work I can provide helpful insight on a wide range of topics relating to epilepsy.
Volunteering to help others with epilepsy is my passion. I’ve dedicated years of volunteer service to advocating and education by using my skills and experience to help others living with epilepsy.
I hope you will support me in my role as IBE Vice President North America.Deirdre Floyd, Past President
Canadian Epilepsy Alliance
