Elevate Hope, Transform Lives

“When Nyla initially received her diagnosis, I cried for extended periods of time as profound grief began to set in. All the hopes and dreams you had for your child have died, leaving you with the reality of a child who, while still alive, faces immense suffering.

There are many good people who genuinely want to help, and excellent trauma therapies available. We are stronger together, united by this shared LGS experience, here to support one another through this incredibly difficult path.”

- Erika, Mom to Nyla, who is living with LGS

"Mi hijo, José Arnal fue diagnósticado a la edad de 3 años, tiene ahora 9. Desde que encontré la Fundación, han sido muy amables, atentos y de mucha ayuda. También nos han ayudado con equipo para nuestro hijo. En sus actividades hemos conocido a otras familias con las cuales podemos intercambiar conocimientos y dudas. Gracias."

(Translation) "My son, José Arnal, was diagnosed at the age of 3 and is now 9. Since I found the Foundation, they have been very kind, attentive and helpful. They have also helped us with equipment for our son. In their activities we have met other families with whom we can exchange knowledge and doubts. Thank you."

- Meitxy, Mom to José, who is living with LGS

"During Rare Across America, I had the privilege of speaking with Senator Hassan’s office, Senator Shaheen’s office, and Congressman Pappas. Sharing what life is like for those living with LGS offered these policymakers a perspective they may not have fully been aware of beforehand. For example, when I mentioned that Addison has experienced over a thousand seizures so far this year—a reality that is normal for our family and community—it brought a sense of shock to the conversation. This reaction helped open discussions around the critical need for better treatments, therapies and care. Congressman Pappas committed to supporting the Creating Hope Reauthorization Act, which extends the Rare Pediatric Disease Priority Review Voucher (PRV) program for six years to continue driving innovation in pediatric drug development." - Kurt, Father to Addison, who is living with LGS

"My biggest advice to other parents is to not give up. If your doctor is not listening to you – find one that will. Find other LGS parents to connect with.

Getting involved with the LGS Foundation has given me hope and connections with people that get it. I have found my tribe in the LGS Foundation."

-Lisa, Mom to Caleb, who is living with LGS

"My brother was diagnosed with LGS and the LGS Foundation had been an extraordinary resource to me as I am an LGS sibling. The picture I added was at the very first LGS Conference we attended and we have attended every other event we can since then! I have met so many other LGS siblings and have made lifelong supportive friendships. I have been able to volunteer at multiple events and have always been treated with kindness and love from the foundation and other LGS families. I am so thankful for the community found within the LGS Foundation and the continued research they do to make the world a better place for LGS kiddos and their families."

- Shaye, Sister to Deven, who is living with LGS

"My daughter has had seizures since before her 2nd birthday, and was diagnosed with LGS when she was 18. We think she's had LGS for many years before the actual diagnosis, it was a new Dr in a new hospital that diagnosed her. Even though we thought she had it, it felt like a kick in the gut actually hearing it. We are so very thankful for the LGS foundation, it has taught us so much, it's been a place to cry, vent, laugh, and belong. No where else have I ever found anyone who walks our mile, but this group, proves we are no alone. #Thankful" - Oliviasmama

"My son was recently diagnosed with LGS and the LGS Foundation has been incredibly generous in sharing information not just for us parents but also things to help his siblings understand. The support really helps you feel less alone when dealing with such an all encompassing syndrome." - brerisa

"The LGS Foundation came to me shortly after my son was diagnosed. They were a great source of information on the diagnosis. The best part is the support and connections they have helped me to make. They have provided me with a safe place virtually in a closed caregiver group and at the International LGS Conference held every 2 years. My son and I have ventured on this unpredictable journey with the support of Ambassadors and LGS Community members. I would not have been able to advocate for my son and his needs if I had not had the LGS Foundation in our life." - JLR76

"My daughter was diagnosed at age 4, we went through the first years researching the new diagnosis alone. Then we found our tribe! The Foundation has provided so many resources, education and support, along this journey. We have a platform for our purpose and are involved to help those who come behind us, so they have a one stop shop when they need it most." - fyrbrat55

"The LGS Foundation is one of the most fantastic and helpful organizations I've ever been involved with... For the first time in 18 years, I felt like I finally found "my family" after attending the LGS conference in Ohio in 2014. That was the first time I met other families who knew what we were going through, and the first time I was in a room filled with people who faced the same struggles as I did. I was awarded a scholarship from the LGS foundation to help me attend the conference and if I didn't receive that, I wouldn't have been able to go." - Steffy9898

The LGS Foundation has provided Educational Kits to over 3,000 Families!

“As a parents dealing with this new diagnosis, the New Family Welcome Kit helped me better understand and explain to family and teachers more in my child’s condition.” - LGS Caregiver

"The About LGS Treatments Kit provides a wealth of information, but most important it also provides a great relevant source for discussions and better communication between family members and doctors. Excellent job!" - LGS Caregiver

“Hello! The VIP Sibling Kits came today and I just wanted to let you know that they are amazing!!! Thank you soo much! My boys are really excited about them. Now my girls (both my girls have LGS) want journals so they can doodle too. Thanks again!” - LGS Mom

The LGS Foundation has invested over $1.8 million in cutting edge LGS Research since 2008!

“When you support medical research, you are helping researchers build the future of medicine and unlock clues behind LGS.” - LGS Caregiver

“I am excited by the prospect of contributing to LGS research in a manner that can ultimately lead to improved treatments for patients.” - Colleen Carpenter, PhD, Grantee

"There are researchers out there who are studying this, who are trying to help find the cures for LGS." - Jacqueline, Mom to Devin, who is living with LGS