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The many ways of and dates for raising epilepsy awareness - Feature article

Over the last years, there has been a growing number of epilepsy awareness events, days, and months-so many in fact that it can become hard to remember all of them.  Because we want to celebrate and raise awareness for epilepsy as much as possible and want many of you to join in too, for this quarterly newsletter issue, we compiled a list of several of the more important ones. You may want to pull out your calendar and take note now!

November 2018: Did you know that the whole month of November is National Epilepsy Month in the US?  November Epilepsy Awareness Month (NEAM) as it is called is very important because all monthlong we can get motivated to teach others what a seizure is, what epilepsy is all about, what proper first aid for a seizure should be, and much more.  Many people decide to volunteer during this month to host their own fundraisers: everything from soccer matches, bike rides, bowl-a-thons, to bake sales. These events are wonderful opportunities to bring awareness to your community, raise funds for your favorite epilepsy foundation, and do your part in making sure the stigma of epilepsy evaporates. 

You might also swing by the #talkaboutit that was launched by actor, Greg Grunberg and which has grown mightily over the last years.  Watch all the celebrities "talking about it" and bringing epilepsy out of the shadows and into the light.  http://talkaboutit.org/

October 26: Pediatric Epilepsy Awareness Day: October 26 was spearheaded by Assembly Member Cecilia Aguiar-Curry's and Dr. Mary L. Zupanc, one of the most respected pediatric epilpetologists in the US and has now been designated as Pediatric Awareness Day. Dr. Zupanc has been instrumental in the development of comprehensive pediatric epilepsy programs throughout the country--with CHOC Children's, and previously at Mayo Clinic, Columbia University and NYU School of Medicine.

Mickie's Miracles (a global Pediatric Epilepsy awareness, education and advocacy non-profit) played a crucial role in this initiative of a Pediatric Epilepsy Day as well and they can help you figure out how to help (e.g. make a donation, organize an awareness/fundraiser event, etc.) children with epilepsy on October 26. 

February 11, 2019: International Epilepsy Day® will be taking place on February 11, 2019. Keep in mind; it is always celebrated on the 2nd Monday of February. This is a major event that takes place across the globe. Our offices usually celebrate the day by decorating the waiting rooms, dressing up, and having cool purple giveaways and epilepsy information. Epilepsy International Day® is a joint initiative created by two powerful organizations: the International Bureau for Epilepsy (IBE) and the International League Against Epilepsy (ILAE), to promote awareness on epilepsy right around the world. With IBE and ILAE represented in more than 120 countries, it gives this day an immense opportunity to highlight the problems faced by people with epilepsy, their families and caregivers, in all these regions of the world where they have representatives. And they definitely have had a huge showing over the last few years on this very special day!

What are the objectives to achieve on this important international day?

* to raise awareness of epilepsy at the international and government level as well as in the general public

* to strengthen the epilepsy movement by uniting epilepsy associations in a worldwide campaign

* to raise visibility on epilepsy and encourage discussion about epilepsy

* to provide epilepsy associations with a significant fundraising opportunity

Keep an eye open for all the events that the Northeast Regional Epilepsy Group organizes on International Epilepsy Day to celebrate the lives of those living with epilepsy and their loved ones and to raise awareness!  You should be receiving regular updates in our weekly email blast (if you have provided your email for this). 

Special days created by epilepsy warriors or for unique epilepsy conditions 

October 2019 (and every October): Paint your Pumpkin Purple® (Or as it is also known, PPP) was created by Ron Lamontagne, amazing dad who wanted to get people talking about epilepsy.  As he drove by a pumpkin patch, racking his brain on how to do this, it hit him: let's paint a pumpkin purple (the official awareness color of epilepsy) and when people ask: "why is your pumpkin purple?" you say something about epilepsy.  PPP is a really fun, creative and powerful way to raise awareness, get kids and adults involved, and the question "Ask me why my pumpkin is purple" gives you a great way to get the conversation started.  How about you paint your pumpkin purple this year and get into raising awareness in October?  To read more: https://www.epilepsy.com/make-difference/get-involved/purple-pumpkin-project 

March 26: Purple Day® is held across the globe to raise awareness about epilepsy.  Cassidy Megan of Canada launched this idea/event in 2008, yes, 10 years ago!  To read more: http://www.purpleday.org/

November 1, 2018: is International Lenox Gastaut Syndrome (LGS) Day®, the official awareness day for LGS around the world. LGS is a type of childhood epilepsy with multiple different types of seizures. In about a quarter of children, no cause can be found. It accounts for about 2 to 5 percent of childhood epilepsies. It usually persists through childhood and adolescence to adult years. Intellectual development is usually, but not always, impaired. To read more about LGS: http://www.lgsfoundation.org/

There are new events popping up all the time and we if we left one out, this was done inadvertently. Feel free to send an email with the information and we will add it the next time we write about epilepsy events: epilepsyny@epilepsygroup.com.

 

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