Events & News


Shining epilepsy star: Shelby Santucci

As a new section in our newsletter, we will be featuring an epilepsy star every quarter.  Epilepsy stars are advocates of all ages and walks of life that either for personal or professional reasons are working steadily and making important contributions to improving the life of persons with epilepsy. In this issue we feature Shelby Santucci, a 15 year old who has turned out to be real dynamite when it comes to epilepsy advocacy.

Last year Shelby, with her mom Bridget, shared with us at Epilepsy Life Links that she just might like to become “more involved” in epilepsy activities. Although she is shy, she jumped in full force once she got started.

1) Tell us about your history with epilepsy, when did it start, what challenges do you face regularly?
I have had epilepsy as long as I can remember.  Shelby was diagnosed with epilepsy when she was 2 years old by Dr. Marcelo Lancman
I have trouble in school and need accommodations in some things to be able to learn the best I can.  Sometimes I have trouble socially, making friends.
2) What made you decide to become active in the epilepsy community?  Did it change the way you feel about having epilepsy?
I decided to start working in epilepsy activities because I wanted to help others.  It changed the way I feel because it feels good to help others.  I have found thru the many events I have attended that I am not alone.  Many people of all ages have epilepsy and struggle just like I do.
3) What have you been doing in the epilepsy community?  
Last year I participated in the 1st Annual Epilepsy Foundation of Northeastern NY Stroll for Epilepsy and raised $500 for the foundation.  It was such a good experience that in March I went to the National Epilepsy Walk In Washington DC with my mom, brother and family friends.  It felt good to be on this walk with my family, friends and my doctors (Drs. Marcelo Lancman and Myers were marching in the same team).  After that I served as Team Captain in May at  the 2nd Annual Stroll for Epilepsy in Rhinebeck NY and in June  at the Annual Sara’s (It’s Not Who I Am) Walk for Epilepsy in New Paltz.
After my first walk, I decided to go an extra step and went to my school’s front office, met with the principal, then the principal and school board members and finally got approved to hang up the National Epilepsy Walk posters in my school.  Victory!  So then I followed up with another successful request and had the epilepsy awareness “Purple Day” posters hung up too.  At my 8th grade graduation I was given one of only five awards presented to a student body of 300 for “outstanding character, commitment to education, and contribution of student advocacy.”
It has definitely helped me to be more active in all these ways.  
4) What are your plans for the future?
I am planning on attending more walks and functions to promote eplilepsy awareness.  I am now a freshman in high school so I want to contact the student council to find out how to help promote awareness in my new school.

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