Monday January 20, 2017
PRESS RELEASE from Ajude o Rafa, The Cute Syndrome Foundation, and Wishes for Elliott
Contacts listed below.
Cannington Ontario – Families of over 150 children globally struggling with SCN8A - a rare but devastating genetic disorder - are joining forces to educate the public about SCN8A and inform affected families of available resources.
The First International SCN8A Awareness Day is coming up February 9th and family-based advocacy organizations including Ajude o Rafa, The Cute Syndrome Foundation, and Wishes for Elliott: Advancing SCN8A Research, as well as individual families are reaching out to share the story of the grave impacts of this newly identified epilepsy.
February 9th will mark what would have been the 21st birthday for Shay Hammer whose father Michael, at the time a
March is national Epilepsy Awareness Month! We encourage our community members to get involved in raising awareness about epilepsy, seizures and seizure first aid in as many ways as possible. If you, a loved one, a colleague, or an acquaintance has epilepsy, take this opportunity to make a lasting difference in the lives of everyone living with seizure disorders.
Click here to learn how you can become involved today
MEMBER OF PARLIAMENT - WHITBY - Celina Caesar-Chavannes
As the Member of Parliament for Whitby, it is my pleasure to congratulate Epilepsy Durham Region on your 30th anniversary and recognize the tremendous service you provide to those living with epilepsy in the Durham Region.
30 years ago, an event took place which changed the lives of many forever.
On a cold December evening, a small group of determined people came together at St. Gregory’s Auditorium in Oshawa. What began as a small volunteer lead support meeting has grown into a vital service in Durham Region; champions helping more than 34,000 individuals each year. Epilepsy Durham Region is now celebrating its 30th anniversary, and is marking its accomplishments.
For so many people impacted by epilepsy prior to 1987, it felt as though a friendly voice, advice, and reassurance were beyond reach. The goal from the outset has been to make Epilepsy Durham Region a beacon of hope; our staff of steadfast advocates fighting for timely diagnosis, medical care, and dignified treatment of those affected. Over the past three decades, Epilepsy Durham Region has paved its way into the community, helping build new services
Our annual Walk for Epilepsy date has been changed from Saturday, June 24th to Sunday, October 29th
Due to low registration numbers, the Durham Community Foundation's Walk for your Charity event has been postponed until October. Please consider joining us in the fall and Walk for Epilepsy! Details to be announced in the fall.