Four of our team members at the National Walk for Epilepsy in D.C.
Team Epilepsy Takes On D.C.
This past Saturday, the National Walk for Epilepsy took over the National Mall in Washington, D.C. for a morning filled with great music, smiling faces, and despite an overcast forecast, a shining day for all those working towards epilepsy awareness. Four members of Team Epilepsy made the trip down to the capital for the event along with more than 5,000 attendees from across the globe.
UK Epilepsy Awareness Continues to Grow
Epilepsy Sucks UK and Gemma’s Ray of Hope, two UK based organizations, are leading the charge to end the stigma of epilepsy and help decrease the risk of SUDEP
Gemma’s Ray of Hope is an organization founded in honor of Gemma Ray, a Newcastle girl who passed away in November 2011 due to a seizure she suffered in her sleep. Gemma lost her life just two days before her 18th birthday. In her memory, Gemma’s Ray of Hope was established to help raise awareness and funding for epilepsy research. Her story is one that many people affected by epilepsy in some way can relate to, as SUDEP and epilepsy continue to remain shockingly misunderstood by the global community. On February 25th of this month, Gemma’s Ray of Hope will be hosting a “Night of Entertainment” charity fundraiser in Bignall End, with ticket sale profits going towards epilepsy research. A fundraising event, Running4Gem, will be taking part in the Adidas Silverstone Half Marathon on March 11th to help increase global awareness for epilepsy.
Like Gemma’s Ray of Hope, Epilepsy Sucks UK is an organization built around a tragic story. Tom Roy was just 22 years old when he lost his life due to asphyxiation following a seizure in his sleep. Since his passing, Tom’s story has been shared to increase awareness of SUDEP and its possible prevention. In Tom’s memory, his family joined on with Epilepsy Sucks UK to promote the use of anti-suffocation pillows, products that may can potentially lower the risk of SUDEP while sleeping. Sucks UK was started by two mothers who each have a child living with epilepsy. Their message? Epilepsy sucks. Let’s do something about it. More information about the pillows is available of their site. People seeking advice can visit the “Tweak Guide.”
Team Epilepsy’s mission is to spread awareness for epilepsy and clinical research. Only through clinical research and disorder awareness efforts can we move forward to help epilepsy get the attention it deserves. Awareness is growing- it’s an undertaking that is steadily becoming stronger on a global level and we’re proud to be a part of it!
Team Epilepsy: It Keeps Growing and Growing and Growing…
Last January, after being on Facebook for just shades over a year, we at Team Epilepsy celebrated hitting the 100,000 “Like” mark on our page, an achievement we could’ve hardly imagined when we first started our epilepsy awareness venture.
According to a woman in the south of England, epilepsy today is still widely misunderstood and therefore an immensely negative stigma surrounds it. Unlike other serious conditions such as diabetes, cancer, and heart disease, she argues that epilepsy is often times kept out of public discussions. What are your thoughts on the article and do you believe that epilepsy does in fact have a negative stigma surrounding it? If so, what should be done to increase the epilepsy dialogue globally to lessen this stigma?
13 Year Old Boy Corrals Epilepsy Awareness
This past November, in honor of Epilepsy Awareness Month, we at Team Epilepsy put together the Purple Pride Contest for our online community, asking our members to submit a “creative expression” that showed their connection with epilepsy and support for awareness. After receiving an outstanding response from our Facebook members, it was a 13 year old boy from the US that ended up winning it all thanks to his mom’s submission “Hospital Stay Better with a Service Dog.”
Team Epilepsy: A Different Kind of Community
We at Team Epilepsy have made it our mission for the past year to promote epilepsy awareness, build an online community for those living with the disorder, and encourage people to openly dicuss their personal epilepsy stories and talk about and debate current epilepsy related topics. Team Epilepsy also works to connect people with epilepsy to clinical trials that study investigational medications.
