As we begin the Holiday Season, I would like to take a couple of minutes to remember what is really important in our lives and to be truly thankful for all that we have. We all work very hard to ensure that our loved ones with Rett syndrome are properly cared for, supported and feel loved all the time. We do this to provide them with a quality of life that we know they deserve and I feel it is our privilege to give to them.
As the President of the Ontario Rett Syndrome Association, I am taking the time to really think about what I am truly thankful for and the blessings that I have been given in this past year. I have had the opportunity to be mentored in my new role by Terry Boyd. She is someone who is truly dedicated to all those living with Rett syndrome and their families, and who has shown this dedication for well over a couple of decades. I am thankful for our volunteer board of directors, who put in a lot of thankless hours to ensure that our association is successful and continues to grow and prosper. It is my privilege to lead this group of people who work together with passion towards a common goal, to make an impact on other people’s lives.
I am thankful for all of the fundraising and awareness initiatives that are led by our members which allow this organization to continue to financially support the three Rett Clinics in Ontario, support the maintenance of the Canadian Rett Syndrome Registry. This fundraising has also allowed us to release the largest Rett syndrome dedicated research grant in the history of O.R.S.A this year; $100,000. Without the continued effort and support from our members, their families, friends and many others, this association would not be able to thrive.
I am most thankful for my family and their support, which affords me the opportunity to attend meetings and put in the necessary work so that this organization can continue to grow and prosper. Elle has opened my eyes to so many things in this world. She often reminds me of a quote that I now treasure. “I thought I would to teach my child about the world. It turns out I have to teach the world about my child.” For this opportunity, I am extremely thankful.