This page was composed so our readers can hear from a few of the many we have helped. Here are their testimonials
From Keri Tetreault:
On behalf of the Tetreault family I would like to thank the Connecticut Epilepsy Advocate for their generous sponsorship of our daughter’s summer camp 2015. Our Daughter Cassandra is 15 years old. She has had epilepsy since she was 18 months old. Despite being on 3 medications Cassie still suffers from seizures on a bi-monthly basis. Cassie is also on the autism spectrum and has an intellectual disability. Finding summer programs to support her needs has always been a challenge and usually she has been stuck at home with me. Last year we had the great fortune to find a camp that offered 1:1 aide for campers. Cassie finally had the opportunity to experience camp like other children. The cost, for this program, however, was greater than we could afford. Without the support of the Connecticut Epilepsy Advocate we would have not been able to send Cassie to summer camp. We are incredibly lucky to have been introduced to Robert. The fundraising and rising of awareness about epilepsy done by this organization is something greatly needed and valued by the community.
Cassie’s first experience at summer camp was great! She went swimming daily, did arts & crafts, drew with chalk, blew bubbles and made wonderful memories with new friends. She even participated in a talent show. We will be lucky if she gets to go again this year!
Footnote: We are proud to say we picked up the cost again for Cassie to go to camp in 2016.
From Lawrence Catanzaro:
Our son had his first seizure in 2010 while vacationing in Myrtle Beach. He was only 15 years old and we were hoping that it was going to be an isolated incident. Unfortunately, in the months and years that followed, he continued to have many more seizures and developed intractable epilepsy. He was under the care of the best neurologist we could find at Yale New Haven, who gave us the information on the Connecticut Epilepsy Advocate, headed by Robert Fiore. Our family did not know where to turn for outside help or support and we desperately reached out and contacted Bob. From the very first conversation we had, we felt so relieved that he was able to direct us in so many positive ways. His knowledge and experience with epilepsy helped our family with so many questions. He was able to help us obtain discounted prescriptions through the pharmaceutical companies. He provided us with a Medic Alert bracelet with our son's information in case of an emergency. He encouraged us to attend the support groups at Bristol Hospital, which we greatly did benefit from and he continued to guide us by sharing his own experiences and continuing to advise us on so many topics. Bob comforted us in a time of desperation and fear. We believe his knowledge is invaluable to any family or individual who lives with this disease. We are truly grateful for having met Bob and thank him for the service he has provided to our family. We hope that other families will turn to the Connecticut Epilepsy Advocate for support. They will not be disappointed.
I am writing to give praise & thanks to Bob Fiore of the Connecticut Epilepsy Advocate, Inc. He solely was responsible for helping my son Jason with moving forward in his epilepsy. I met Bob about a year and a half ago when I attended an informational meeting held in Milford on CT disabilities acts. I had seen Bob on the cable TV program he had years ago so that was exciting for me. I do not recall the presenter's name but Bob was also there. After the meeting, he and I introduced ourselves. I went to this meeting to find out info for my adult son who lives in Norwalk. It turns out Bob knew my son’s girlfriend so right there that was helpful. The next day Bob contacted her and after a series of a few calls, Bob met personally with my son & his girlfriend. Bob not only gave assistance on bus transportation discounts, prescription discount info but he called Dr. Zager to get Jason in immediately to see him. My son had lost his way in managing his seizure condition and I was extremely concerned. With him being an adult, I had very little influence in his life. But after Bob met with him, my son now has knowledge and ability on the use of the city transportation system, able to afford his prescription, and currently under the care of Dr. Zager. On top of all this, Bob stays in contact with me and does all he can to stay in touch with my son. To have an advocate like Bob who actually walks the walk is beyond my expectations. I know of no other person who actively offers his services, experience, and advice to a much-needed forgotten community of people.