Co-Founder, Medical Liaison, and Director of Patient Advocacy
Kayte Thomas’ daughter Ashley was born with gastroschisis in 2005, and the isolation of the experience moved her to reach out to others. She quickly learned that there was no support network for expectant gastroschisis families, and started providing outreach to new parents in 2006 via the internet. She still runs various support networks online including the yahoo group and Babycenter forum. Kayte began fundraising efforts in 2007 which were contributed to the NORD gastroschisis fund and started learning about research requirements and grant processes, hoping to one day start a nonprofit. Kayte and Meghan met in 2010, and the pair proved to be an unstoppable force in the gastroschisis world as Avery’s Angels Gastroschisis Foundation was formed shortly thereafter. The two chose the gastroschisis ribbon colour in their livingrooms from a box of crayons one night, which still remains one of their favourite stories of their journey together. Kayte became CAO of the organization for its first 3 years, then chose to focus more on medical advocacy and research as the Foundation’s volunteer base grew. Now she works primarily to collaborate with medical professionals worldwide, and speaks as a patient advocate at various conferences. Occasionally she still provides direct outreach to families via online social media sites. Her passion lies in finding the cause of this birth defect, and hopes her continued efforts with medical research will one day prove meaningful.
Kayte has spoken to medical professionals worldwide as a champion for gastroschisis advocacy. She traveled to Spain in 2010 to speak to the First Best Care for Neonates Conference in Barcelona which focused on gastroschisis, and helped to make AAGF an international presence. She has attended conferences with NORD, the DIA, and the NBDPN on scholarship from these organizations as a patient advocate. Her efforts led clinicians at the CDC to reach out to her, and she became one of five parents to form the Parent Advisory Group (PAG) with the NBDPN and CDC in 2012. The PAG is made up of 5 parent advocates and 6 clinicians, and they focus on raising awareness of all birth defects in the national spotlight. The group won the 2013 National Birth Defects Prevention and Education Award for their advocacy efforts. Together, she and 3 other PAG members have co-authoured a journal article to be published in the International Journal of Environmental Research and Public Health in late 2013. Additionally, Kayte is also a PCORI grant reviewer and mentor, which she views as an incredible honour to be able to bring her voice and knowledge to the medical research realm. Kayte holds a Masters of Social Work degree and her extensive knowledge has been an invaluable asset to the team. Her daughter Ashley, the driving force behind Kayte’s advocacy efforts, is doing well today. Ashley’s resiliency and vibrant nature provide encouragement to gastroschisis families and she is slowly blossoming into a young advocate herself – much to her mother’s delight!
Click here to read a Q&A with the DIA, published in Global Forum Magazine, October 2014