PHILADELPHIA, PA — The Love for Liam Foundation, a 501(c)(3) nonprofit that seeks to raise awareness for pediatric epilepsy and drive research funding, announced its formation and purpose, named its Board Members and shared details ahead of its Second Annual Liam Johnson Memorial Golf Outing & Benefit Dinner to be held on May 5, 2023.
The Love for Liam Foundation was formed by Heather and Kyle Johnson in memory of Liam Johnson who was diagnosed with early infantile epileptic encephalopathy. Funding will go directly to the Epilepsy Neurogenetics Initiative (ENGIN) at the Children’s Hospital of Philadelphia (CHOP), where Liam was cared for. ENGIN is considered leaders in the field of epilepsy genetics, and offer every child seen unparalleled access to diagnostic genetic testing, an individualized treatment plan and enrollment in their innovative research studies.
The Love for Liam Foundation has already put in place a Board comprised of professionals and community members that share a mutual goal of advancing ENGIN’s research. Board members include Kimberly Bronstein, Jacqueline Brown, Jennifer Casas, Danielle Devilbiss, Jennifer Ellis, Matthew and Katelyn Festa, Eric Fischgrund, Timothy Mahoney, Miriam Roberts, Donald Sivick and Kathleen Weiland.
“In the three weeks Liam was with us he changed our hearts and lives forever,” said Heather Johnson, cofounder and President of the Love for Liam Foundation. “We have learned so much about epilepsy over the past year. In 60% of cases, the cause of epilepsy is unknown and seizure freedom may not be possible. Liam was receiving three different seizure medications and still passed away from respiratory failure due to unremitting seizures. We chose to fund epilepsy research because the more we know about epilepsy genetics, the more likely we are to find cures and targeted treatment for the future.”
The Love for Liam Foundation started by raising over $75,000 for ENGIN research during its inaugural Liam Johnson Memorial Golf Outing & Benefit Dinner held in May 2022. Friends, family, ENGIN team members, national and local businesses all turned out to sponsor, donate, hold a raffle, eat, drink and dance in Liam’s memory. It was following the event that Heather and Kyle Johnson decided the initiative was so successful and important to their cause, that they would form the 501(c)(3) foundation.
This year the golf outing and dinner take place on May 5, 2023, at the Northampton Valley Country Club in Richboro, PA. For local businesses and individuals considering sponsorship or donation, please click here.
“We love and miss Liam so much, and are so grateful for how much ENGIN continues to prioritize his impact,” said Kyle Johnson, cofounder of the Love for Liam Foundation. “ENGIN is extraordinarily special in their tireless commitment to improving epilepsy treatment across the entire spectrum while making families feel cared for and supported. We’re honored and motivated to raise awareness and spread the necessary message that ENGIN is for all children.”
To learn more about the Love for Liam Foundation, visit the website or follow the LinkedIn page.
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