This page was composed so our readers can hear from a few of the many we have helped. Here are their testimonials
From Felicia North:
In my opinion, the Connecticut Epilepsy Advocate is the best and most reliable non-profit organization an individual with Epilepsy or their caregivers can employ to assist with issues unique to the disease. It assists individuals dealing with Epilepsy to work with doctors and pharmaceutical companies whenever necessary. Excellent research is done on behalf of individuals without hesitation. The founder, Mr. Robert Fiore, is the hands-on President of the organization who personally extends himself by expending endless time and energy to work with providers on behalf of those who require assistance. His dedication and tenacity to resolving issues goes the extra mile and are far more than I've experienced with other similar organizations. His concern is always first and foremost to arrive at a satisfactory outcome for those requiring his services. He doesn't expend himself for financial gain but works tirelessly to assist all those with Epilepsy, regardless of their circumstances or background. Due to COVID-19, the Connecticut Epilepsy Advocate has been conducting virtual meetings via Zoom as a means of support for those with questions and issues. These have proven to be a benefit to all that participate in such meetings.
As an example of his dedication to those asking for his assistance, he helped me acquire the prescription brand medication that works best for me. My insurance company attempted to pay for only generics to control my seizures, but these did not have the same efficacy as the brand name. My seizures were not controlled as well by any of the generics. Thanks to Mr. Fiore's efforts, I'm now receiving the brand name. Based on my exceptional experience with the Connecticut Epilepsy Advocate, I heartily endorse the use of their services to anyone with Epilepsy or their caregivers.
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 every year for Cassie to go to summer camp since 2015 and we will continue to do so.
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.
From Christy Downs:
Through Connecticut Epilepsy Advocate we have found more help than we expected. I had initially contacted Mr. Fiore to see if he knew of a place that had scholarships for students with Epilepsy because my daughter’s grade point had been lowered by serious side effects from a medication we were taking her off of. He helped us find financial aid for her and she will attend Gateway in the fall of 2018 with a grant.
She was also given information about where she could get services. He sent us to the Bureau of Rehabilitation where she was able to get a caseworker who might help her find employment.
He also got her a Medic Alert bracelet she can wear when she is away from home by herself. And even a new Neurologist who she feels will give her better care than the others we have tried. She had some concerns that her last one did not even address or seem concerned about.
I also received information on services that might help me with my PTSD symptoms. Even though some things I am not eligible for because I already have a therapist and open, or am not ready for group settings, at least I know they are out there.
The best thing is knowing my daughter will start school soon. And be able to be more independent since she won't need me to take her to school. It's been great to see her finally going to college.
From Nancy McDonald:
From Lawrence Catanzaro:
Bob has been amazing. His Organization, the Connecticut Epilepsy Advocate has opened up options for us that we didn't know of. Bob is super supportive. He frequently calls to check in and keeps us updated on resources that, as exhausted parents, we've overlooked or not found. He's come up with great ideas on how to better protect our child and guided us to resources that have helped us tremendously. He doesn't stop. Even if you think he's done enough, he'll do more. He noted that we have no proof of the right to carry and administer our son's emergency rescue medication, and explained the documentation needed. He helped provide us with a free Medic Alert Bracelet and the Advantage Plus Plan to identify our son's Epilepsy and his medication needs. It's something we never thought of, but Bob has the knowledge and experience to guide us. We're are forever grateful.
From Joy Mermelstein:
From The Lopriore Family:
I want to thank the Connecticut Epilepsy Advocate, especially you Bob Fiore for all the help you have provided for our daughter Gina. We were not aware of the help we could get for our disabled daughter until I contacted your agency. You were patient with us and negotiated with outside companies to bring to my daughter the benefits needed for her to be in supportive living. Your agency has provided the materials needed at no cost to us so that Gina could manage her disability without us being with her. Gina now has the Embrace 2 watch to detect seizures and a Medic Alert Bracelet with subscription services free of charge.
I will always remember you fondly and will mention your agency when family and friends are looking to donate. Thank you again. The Lopriore Family.