Philanthropy Committee Report to EASFAA Council
February 26-28, 2014
EASFAA Council Meeting
Washington, DC
Committee Members:
Philanthropy
Rakes, Melissa
Brett, Jonathan
Conte, Daryl
Dixon, Kathy
Tilton, Elizabeth
Rosado Perez, Michael
Chair
Member
Member
Member
Member
Member
National Epilepsy Walk:
EASFAA has formed a team for the National Epilepsy Walk on March 22 in Washington, DC. We
need Council to spread the word and help us reach our goals:
1. Raise $10,000.
2. Have every state represented in the walk.
Cannot make it to DC? Walk virtually or make a donation to an existing team walker.
Donations can be made my EASFAA members, colleagues, neighbors, family, friends, etc.
Go to the team page URL: http://giving.epilepsyfoundation.org/goto/easfaa to donate.
Many of our EASFAA members have reached out to the committee to share their stories about
epilepsy. I would like to share one that illustrates how important this project is.
Jacob is an active, fun loving kid who has been diagnosed with Lennox-Gastaut Syndrome (LGS). LGS
is a rare form of epilepsy that consists of frequent seizure activity, a variety of seizure types and is
resistant to medication. Jake first started having seizures at the age of 2, since then our son has
regressed and changed drastically. He is nonverbal, has behavioral issues, global developmental delays,
is a sensory seeker and continues to have multiple seizures daily. With all the challenges Jake faces
daily, he bounces back from seizures and is curious about anything and everything he can get his hands
into. He keeps us active and on our toes!
Parents wish the world for their kids - for them to be happy and healthy. This didn't happen for us, Jake's
epilepsy is severe...LGS has changed our life forever. The daily challenges we face are beyond normal.
Keeping Jake safe is difficult and constant, trying to keep him interested, engaged and playing with
something most of the time seems impossible. LGS affects the entire family. We have tried a variety of
medications, the ketogenic diet, as well as ACTH steroid treatment - he continues to have multiple
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Incorporated as not for profit in the state of Massachusetts
seizures daily. However, we have a great support group... supportive family, friends and co-workers,
Jake has a great team at home and at school, he has a chiropractor that goes above and beyond for him
and he has a great little sister that advocates for his needs. On a positive note we have met many
wonderful people who we wouldn't have normally met had it not been for Jake!
Please share your ideas for how we can increase participation in/donations for the walk.
Conference:
1. There will be several opportunities to raise money for epilepsy at the conference.
 We need donations (gift certificates/cards) from each state for the
Conference Charity Project.
2. We will continue to raise epilepsy awareness during the conference. The National
Epilepsy Foundation intends to have a presence at the conference and be available
to share information. We also want to have other mechanisms to promote
awareness, perhaps with a “purple day”. Ideas or suggestions would be appreciated.
Respectfully submitted,
Melissa L. Rakes
Philanthropy Committee Chair
Delaware Technical Community College