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Northern California

Alexis Ramirez

Who’s In Your Family?

My husband Cristian, daughter Mari (2), son Tayen (11m) who has CHARGE, our labradoodle Luna and Myself.

What do you want people to know about your family?

  • We live in the East Bay Area CA.
  • My husband and I met in college, where I studied sociology and my husband was studying coding and web development.
  • I have been in the advocacy world since I was 19.
  • We are all learning ASL and our 2 year old currently knows more than anyone.
  • We’re still learning but passionate about disability rights and advocacy.

Why do you Volunteer with the Foundation?

My main reason is because advocacy is apart of who I am and I lost that for awhile when covid hit, after Tayen was diagnosed with CHARGE and I connected with other state liaisons I knew I wanted to support other families, especially ones who are just getting a diagnosis, who’s world may feel a little upside down and may just need a little extra support.

What activities do you like to do?

  • We love hiking and traveling, both have been difficult the last several years.
  • Alexis loves photography, books, podcast and various self care activity.
  • Mari and Tayen love books, dancing, and getting into EVERYTHING

To contact your state’s Family Liaison, or if you are interested in becoming a Family Liaison, please email Lourdes Quintana at Lourdes@chargesyndrome.org.