Navigating Epilepsy: The Road Ahead

Epilepsy Grassroots Movement in New Jersey, New York and Pennsylvania


The definition of a grassroots movement: it is created naturally and spontaneously starting in the bedrock of the community and then spreading upwards and outwards.  Grassroots movements are often at the local level and count on volunteers to keep the movement moving and growing. 

Did you know that over the last few years, an epilepsy and seizure disorders grassroots movement has been growing in New Jersey, New York and Pennsylvania?  It started out small: a group of patients and parents and spouses who wanted to do something to make things better for those who have epilepsy.   A few dedicated doctors were also part of the group.  None of these people were rich or privileged; but they were driven for a cause.

The first years, a small team showed up to some of the local epilepsy walks and even to the first and second National Epilepsy Walks.  They walked under the banner of the Epilepsy Life Links- the patient advocacy branch of the Northeast Regional Epilepsy Group-their epilepsy treatment program. 

Over the years, the team has swelled to 40 plus members and has fine-tuned fundraising and awareness raising activities to the level of an art.  By now, several of the members have been invited to be part of Walk Organizing Committees and are team captains in the tri-state region.  They have hosted fundraising gatherings, distributed flyers to their local stores and workplaces, sold raffles (for items that they themselves knitted) and cupcakes to neighbors, used many social media outlets, and talked to pedestrians who ask about why they wear purple or about their T-shirts that boldly state: ASK ME ABOUT EPILEPSY. 

Last year, the Northeast Regional Epilepsy Group team was the biggest fundraiser for the American Epilepsy Society and this year they came in at a solid second place (the competition was TOUGH).  Their efforts have not gone unnoticed and for the last two years, the doctors at the Northeast Regional Epilepsy Group matched the funds they raised in recognition of the monumental effort they had made to raise funds and epilepsy awareness for the American Epilepsy Society.

This epilepsy grassroots movement is awe-inspiring and is rightfully deserving of recognition. 

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