Love For Liam Foundation

05/08/2026

Together, we raised 🌟$100,000🌟 at our 5th Annual Liam Johnson Memorial Golf Outing and Benefit Dinner 💜

Progress doesn’t happen by accident. It happens because of advocates like you, because of researchers who stay relentless, and because of parents who become agents for change.

The energy, kindness, and support that all of you bring to this day is magic 💜✨

03/21/2026

Rare genetic diseases are collectively common: they affect 1 in 10 people in North America. 30 million Americans are living with rare disease, yet 95% have no treatment. The mismatch in these numbers underscores the urgent need to disrupt the status quo and develop new approaches to deliver precision cures at scale. This world isn’t naturally built for children with complex needs, so it forces us to become their agents for change. In awe of these parents who elevate hope in the rare disease community ❤️

CNBC’s Becky Quick steps out from behind the anchor desk to share her family’s private battle with her daughter’s rare disease. Through her story and others like it, Quick reveals the stark reality of patients caught between groundbreaking science and the persistent gaps in funding, access and...

02/28/2026

Oh my sweet boy, today is rare disease day💜🦓💜

60% of epilepsy cases have an unknown cause. We can’t wait to live in a world where rare, unknown, and incurable has a much lower percentage. We pray that no other families have to go through what we did and will keep putting in the work to raise money for the research needed 💜

http://www.charitygolftoday.com/liamjohnson

02/19/2026

The LOVE FOR LIAM FOUNDATION is deeply grateful for the unwavering support of this extraordinary community as we launch our 5th Annual Liam Johnson Memorial Golf Outing and Benefit Dinner. Our mission is to raise awareness for pediatric epilepsy, raise funds to support research and treatment for genetic epilepsy, and to support families with children with epilepsy.

Pretty surreal that the golf portion sold out again on the day we opened to previous participants but there are still dinner tickets available and we would love you for you to join us. Dinner tickets can be purchased here: www.charitygolftoday.com/liamjohnson

Volunteers make this day possible, so please let us know if you are able to volunteer.

We would also love any and all help with raffle baskets and silent auction items, so please let us know if you are able to donate.

We can’t wait to see you on May 1! 💜

Thank you for allowing Liam's love and light to continue to have a ripple effect in this world. Your participation and support means so much to us, the Epilepsy Neurogenetics Initiative (ENGIN) at the Children’s Hospital of Philadelphia (CHOP), and the Center for Epilepsy and Neurodevelopmental Di...

12/17/2025

Such an honor to partner with Today is a Good Day 💛

https://podcasts.apple.com/us/podcast/nicu-today-a-podcast-by-today-is-a-good-day/id1726672355?i=1000741210873

https://open.spotify.com/episode/1lT4eT7gHl6PTYwI8uX4v3?si=_oHDbVBhR0yhs3KGpIJYUg

11/20/2025

In the spirit of Thanksgiving, we would like express our deepest gratitude for the Penn Rugby community. They have been a constant source of support throughout our epilepsy awareness and advocacy journey. From the very first Liam Johnson Memorial Golf Outing to four incredible Benefit Dinners, this community has made a profound impact through continued sponsorship.

For the past three years, we’ve been honored to see the men’s rugby team proudly wear the Love For Liam Foundation on their game jerseys—a powerful symbol of solidarity and hope that continues to inspire us every day. 💜🤍💜

11/06/2025

✨DOUBLE✨ your impact - we’re matching all donations for Epilepsy Awareness Month! 💜

11/03/2025

11/03/2025

November is Epilepsy Awareness Month so we painted white pumpkins purple and brought them to our boy 💜🤍💜

As always, Kyle and I will match all donations in the month of November 💜

07/08/2025

This new Center will advance on-demand gene-editing cures for children with severe genetic diseases 🎉

With the launch of the new center, we're one step closer to making personalized CRISPR cures a reality for children born with rare genetic diseases.