On November 6, 2018, our beautiful 9-year-old daughter, Joanna, passed away in her sleep. This tragic event was a shock to our family and our entire community. Though this is a parent’s worst nightmare, we cannot succumb to the paralyzing grief we feel, because we need to stay strong for Joanna’s siblings, Isabella, Andriana and Raphael. Most importantly, we refuse to let Joanna’s tragic passing define her memory. We want to remember Joanna for her carefree personality and adventurous character. Joanna never let the fear of failure deter her from trying something new. This venturous character trait was contagious to anyone that was in her presence. Moreover, Joanna was always smiling and singing. She loved musicals especially, The Greatest Showman. After Joanna passed away, we found the most wonderful video of Joanna singing the film’s theme song “Never Enough” by Loren Allre. Though at times it is painful to watch this video that Joanna had made, we soon realized how profound the lyrics to this song were and how vital it was to hear Joanna’s voice sing the words “never enough” over and over. They became the guiding force in our family’s quest to never surrender to tragedy and loss.
Our Mission is to advance public awareness of epilepsy and the risk of Sudden Unexpected Death in Epilepsy (SUDEP), to donate to research in finding a cure for Epilepsy and to help families with financial needs living with children with epilepsy.
Research to Find a Cure in Collaboration with CureEpilepsy.
CureEpilepsy is a non-profit dedicated to funding scientific research to find a cure for the 3.4 million Americans that live with epilepsy. Joanna Sophia Foundation collaborated with Cure Epilepsy to find a research grant that will be called The Joanna Sophia Grant. The research will be dedicated to studying SUDEP. It will explore factors and brain areas that may trigger SUDEP and to understand why SUDEP mainly occurs when a victim is sleeping. Thanks to the support of our community, we have already raised $100,000 of a $250,000 grant. Additionally, the foundation aims to fully fund the $250,000 grant by the end of 2023.
Helping Families with financial need living with children with epilepsy
In 2022, we met a little girl named Gabby who lives with uncontrolled seizures. Her family is always on constant alert and requires one adult to be with her always. Her family decided to get a seizure alert dog to help them. A seizure dog has been trained to sense and notify their companion about an oncoming seizure and can also protect them from getting hurt if a seizure does occur. Gabby’s family reached out to Aspen Service Dogs in Albertson Canada but realized it was very expensive to get a service dog. We teamed up with Aspen Service Dog and donated the last $10,000 dollars needed to purchase Gabby’s trained dog. With their service dog, Gabby and her family have enhanced their quality of life and increased Gabby’s independence. Moreover, Gabby will now have a lifelong companion.
It is estimated that approximately 3.4 million in the United States have active epilepsy, and more than 65 million globally. Additionally, 1 in 26 people will develop epilepsy at some point during their lifetime. Epilepsy can begin at any age. Studies haven’t identified a prime diagnosis time, but the incidence rate is highest in young children under 2 and adults aged 65 or older. We will host fundraising events in memory of Joanna to give financial aid to those in need. We hope to inspire others with Joanna’s personality and positive outlook on life. We would love to hear your story and help if possible. Please reach out to us if you or someone you know is in need.
People around the world have epilepsy
In the United States
People will develop epilepsy at some point in their life
June 24 2023
This is the fourth annual Joanna Sophia Fun Run.
It has been two years since our daughter became our angel. Not a minute goes by that we don’t think of her silly humor and her giggling moments with her siblings. What used to be our normal Friday family night, where everyone would enjoy a movie and feel comfort in silence is no longer there. Our wish is for our children to maintain the innocence they had prior to our tragedy. For us, it would be a blessing for them to have that moment again, but the odds are not in our favor. As parents we should be the guiding light for our families and rise up to inspire them and others to not let negativity bring them down. Rather, we strive to bring positivity in our lives and to encourage them to conquer anything that comes their way.
Every donation enables us to advance our mission and is 100% tax deductible. Our Tax ID number is 83-3363701.
To donate by mail, please make your check payable to “Joanna Sophia Foundation” and send to: 11-01 154th Street Whitestone, NY 11357
To donate online, please click the Donate button below:
