Finding a CURE for Epilepsy with FACES- The Notaris Family Story

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Amanda Notaris

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100% Raised of $7,000 Goal

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Finding a CURE for Epilepsy with FACES- The Notaris Family Story

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About My Campaign

21 years ago at the age of 27 my husband had the unfortunate unexpected membership into a club that no one should ever have to be a part of, one that is life altering after it terrorizes you. Until epilepsy entered his life he worked hard to become an attorney and CPA, and he believed anything was attainable if you worked hard enough. In 1995 he found out that was not true. A cure for this debilitating disorder was not fixable with hard work. He was determined to not allow it to control his life but it does and it worsened over time. Fear and hopelessness continued for us as a family when previous treatments didn’t work. We visited many top epilepsy centers all over the country. Doctors felt they could stop his seizures but not without significantly altering his memory leaving him on disability for the rest of his life. It was not until our treatment journey led us to a local hospital at NYU Langone that we hadn’t been to yet where a ray of light was given to us by the beyond brilliant team of Dr. Devinsky, Dr.Doyle and their team. In May of 2013 my husband under went 2 brain surgeries and now in 2016 he continues to be seizure free and his risk factor is the same as anyone. The change in our life as a family is extraordinary, a true miracle and my husband’s life expectancy is no longer cut short by a dangerous disabling disorder. We have 4 kids and he can drive them, participate in skiing, water activities & sports for the first time after 18 years of suffering seizures. Epilepsy has taken us to the darkest places we have ever been and now the light has slowly returned to our family and with this positive transition has also come a deep sense of responsibility to help others in the same or similar fight.
Epilepsy’s prevalence is greater than autism, cerebral palsy, multiple sclerosis and Parkinson's disease all combined. Despite how common it is, it is among the least understood of major chronic medical conditions. Monies are continually needed to support the nonprofit organization founded by Dr. Devinsky, FACES . We have vowed to give back and help raise funds for this organization that helps people live longer safer lives. Since we are not runners my brother Brian Heller is going to run the NYC Marathon for us in support of FACES. We will be there to support him.Days after I asked Brian to run for me, his oldest son was diagnosed with a children’s form of epilepsy and is scheduled to see this brilliant team of doctors. Thankfully his son is expected outgrow his seizure disorder but they still must endure these years that it has come into their lives. It is ironic that the marathon is 26.2 miles. That is approximately how long Jimmy’s seizures lasted, they were typically 26- 30 seconds. Needless to say, the 4.5 hours it will take my brother to run the marathon will feel much shorter than sitting through a seizure and waiting for Jimmy to come to back to us. Thank you for any tax deductible contribution that you can make to FACES.

My brother BRIAN HELLER  in NYC Marathon 2014
My brother BRIAN HELLER in NYC Marathon 2014
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How Your Support Makes a Difference

This campaign supports: FACES (Finding a Cure for Epilepsy and Seizures)

Your gift to FACES helps our specialists make major strides toward a cure for epilepsy, while providing exceptional clinical care, education, awareness, and support to all who come to us for care. 

Comments

Sophia and I want to show our love and support for the cause and your family who we love and appreciate so much! Sophia is donating in her grandmother's name, who she is so thankful to for bringing you in our lives.
For the cure!
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As the loved one of someone who experiences seizures, I want to thank you for your efforts to bring awareness and contribute to finding a cure for epilepsy and seizures!
We totally support you guys!! And hope that a cure is found in the near future.
Amanda you never seize to amaze me with your passion. Love the cause of FACES.
Happy to help support - Best of luck! :-)
Thank you for helping find a cure! Good luckâ¤ï¸
It's our pleasure to support XO!
We â¤ï¸ you both!
Thank you for the wonderful energy you both give to the cause of helping others with Epilepsy. All the best to your brother in law running.
Wishing you all the best!
It is our pleasure to contribute. May God continue to bless you and your family with health and happiness always!! The Kokkoris Family
Amanda...so glad that Jimmy is doing so much better....so happy for you and your family....so nice of you to give back in this way ....love to your brother Brian for doing this xoxoxo
You are truly inspiring, Amanda and Jimmy. Thank you for all your time and efforts. -Debra and Dan
All our best to you!!
Thank you for sharing your story Amanda and Jimmy. Brian and I are proud to support your brother and this wonderful foundation!
Let's find a cure fast!
We are so proud of your cousin and thankful for all the foundation has done for our Jimmy ! Xoxo
Prayers
Run Brian, Runnn!! â¤ï¸ Love you and thank you! Jimmy- you are a warrior. I will never forget seeing you after surgery that day. Thankful for the success of the surgery and thank you for sharing your experience and dedicating time to help others.
Good luck to Brian! We are proud to contribute to such a wonderful organization.
Thank You Brian for running on behalf of my Brother and his amazing family!
To my very brave and strong cousins--much love health and happiness
Glad to contribute!

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