For the post from CanFASD: click here.
We created the Adult FASD Expert Collaboration Team (AFECT) to make sure the voices of those with FASD are included in the research process.
Research can help to improve outcomes for people with FASD. We use research to create programs and resources that are backed by evidence. But in order for research to effectively help people, researchers need to understand the areas where individuals with FASD and their families are struggling.
In the past there was a big gap between FASD researchers, service providers, and people with lived experience. CanFASD wanted to bridge that gap. The first step was to create the Family Advisory Committee (FAC). This is a team of caregivers and parents of people with FASD. They help researchers understand areas where caregivers need more answers.
The AFECT was launched in the winter of 2020. It is a group of adults with FASD across Canada who meet monthly with CanFASD members to talk about FASD research. Each AFECT member is supported by a mentor from the FAC. Members of the AFECT are self-advocates. They don’t speak for all people with FASD, but in speaking from their own experiences, they help researchers understand more about this disability.
Their mission is to advise on priority areas of research for individuals with FASD and to help translate results of research to make sure they are understood by and available to people with FASD.
Meet the team
I was born in El Salvador. I was adopted and raised in B.C., Canada. I have amazing parents and two sisters. I am the middle child. I work and I am very independent. I am a self-advocate and public advocate for FAS/FASD awareness.
My name is Maria. I am 28 years old. I am a mother of a 3-year-old son, Victor. He is the most important person in the world to me. I try very hard to be the best mom I can possibly be. I am a certified dog groomer. I can do cats too, but I am allergic to them. I like to watch TV and will often get caught up in a series. I enjoy cross country skiing, running and have been told I am a natural at them.
I enjoy having friends, but friendships are a lot of work. I have some good friends and my best friend is my sister. I have a large dog and two cats (I live with the allergies). I live on my own with my son.
In 2015, Niall returned to Vancouver, B.C. while chasing his dreams in the fashion industry. He found himself at a crossroads, to continue down the path he was on or choose a path never seen. After centering himself with what was inside his heart, he chose the path of most difficult terrain. He has overcome sexual assault, drug addiction, and living with the stigma of FASD, as well as the death of his older brother who was taken by a drunk driver. Niall is now a published author, clothing designer, motivational speaker, and President of a non-profit BMX Club in Warman. He is success-driven and leads people to breaking the chains of trauma and overcoming the fears that hold us back in life and living out our purpose.
My name is Sandra Noel, and I’m an adult living with FASD. I was diagnosed recently, and I enjoy being a part of the AFECT committee. I’m learning more about FASD, and meeting new people. I’m grateful for this opportunity.
Jessica is a born and raised Yukoner who lives in Whitehorse. Jess and her parents struggled as she grew up. At age 20, she was diagnosed with FASD and she has received helpful support since. Jess is proud to have graduated at age 26 with a full Grade 12 diploma. Jess has been advocating for individuals with FASD for over fourteen years. She feels strongly that parents get help with parenting and that support workers understand what supports can make a difference for individuals with FASD and their families.
Jess sees herself as a wanderer. She is ‘a people person’ and has enjoyed helping both Yukoners and visitors in her employment with the Whitehorse Trolly, Canada Post, the Yukon Transportation Museum, and as a Covid Screening Information Officer for Alaskans travelling by vehicle through the Yukon. She is currently employed as Covid Screening Information Officer at the Whitehorse International Airport.
Jess advocates strongly for FASD research. She was peer coordinator of the Wanderers Art Project from August 2019 to March 2021. This project, which was sponsored by researchers, Michelle Stewart and Rebecca Caines of University of Regina, culminated recently in a presentation at the Yukon Arts Centre April 11, 2021.
When not working her many jobs, Jess enjoys viewing Flying with Broken Wings, a Facebook page for people with FASD. She is a member of the Family Subcommittee of the Yukon Interagency Advisory Committee on FASD and hopes that soon AFECT members can physically meet and that she can attend a Vancouver FASD Conference.
Jessica is a proud mother of her daughter, aged 14, and is married to Brady McMurphy.
Brady is a third generation Yukoner who lives in Whitehorse. He was diagnosed with FASD at age 24 in 2014. After high school, Brady completed an Employability Program and went on to graduate as a Level 2 certified cook. He enjoys cooking to satisfy others.
Brady worked as cook at Bridges Restaurant for five years, and then as manager for one year. He sees his ADHD in a positive light: as an asset at work helping him manage many things that need attention at the same time.
When not working, Brady enjoys watching movies and is a serious video gamer. Brady is also a member of the Family Subcommittee of the Yukon Interagency Committee on FASD. Brady is keen to support research that can improve life for people with FASD and has a special interest in the new FASD and Cannabis study.
Brady has been married to Jessica McMurphy for six years.