Do You Have a Change Agent?

The power to change a life is in each of us. The thoughtful actions of others, big and small, can help make our family's life with Lennox-Gastaut syndrome (LGS) more positive. A Change Agent is a person whose help, compassion or encouragement makes a positive impact on someone living with LGS. A Change Agent can be almost anyone, like a teacher whose extra attention made an educational goal possible or a friend who sees beyond the LGS diagnosis. Nominate a Change Agent who has made a difference in your family's life with LGS! 

Change Agents of the LGS Community

Meet some of the Change Agents who have been nominated by families living with LGS.

Change Agent: Matt, adaptive sports instructor

Nominated by:  Natalie, mother of Lili, who has LGS

We met Matt for therapeutic horseback riding when Lili was 3 years old. And he instantly took my little baby right away from me, and he said, "Lili, we are going to go have fun." I'm very grateful for someone like that in our lives. If it hadn't been for him, I think I truly would have limited Lili over the years by not realizing how many adaptive activities she can participate in. Matt is an amazing person who has really been a Change Agent in our lives and shown us all that Lili can do.


Always consult your heallthcare provider before having your child with LGS start new activities.

Change Agent: Amanda, family friend

Nominated by:  Andee, mother of Kannon, who has LGS

Amanda reminds me every day that Kannon is leading an extraordinary life. She has supported me from day one of his LGS diagnosis. She is also a professional who works with families of individuals with intellectual disabilities, so her knowledge has been extremely beneficial to me. Amanda lets Kannon’s light shine so brightly and does everything in her power to make sure his story is shared and respected. Kannon and I are both better because of her, and Amanda is definitely a Change Agent in our lives.

Change Agent: Stefany, sister and aunt

Nominated by:  Kelly, mother of Isabela, who has LGS

I nominated my sister, Stefany, as a Change Agent because she has been there for us since day one. There were times when I had to go to the hospital alone with my daughter because my husband was with my son, and Stefany would come and stay there with me and be my support system. We've cried together. We've laughed together. We've celebrated Isabela's "inchstones" together. She's just been a really big help for me in this journey, and I want to thank her from the bottom of my heart.  

Change Agent: Christina, friend and founder of the LGS Foundation

Nominated by:  Darla, mother of Aaron, who has LGS

Christina is our Change Agent because she almost single-handedly started the LGS Foundation. She was a big sister who wouldn't settle for the status quo and said, "We can do something about this." And she made it happen! The Foundation has grown exponentially and has changed the lives of so many families. Christina has included us and made us all feel valuable. She pours her whole heart into what she does and is a loving, caring individual. She has no doubt been a Change Agent in our lives.

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