FASD Role Models

It wasn’t until we started to find the stories and experiences of adults, young adults, and teens living with FASD that we truly began to see a way forward past the diagnosis. We began to hear and read first person accounts from people who know what it feels like to walk through the world with this invisible disability.

So much of what little focus our society has for FASD is spent on prevention. As FASD is 100% avoidable, this is important and urgent.

And yet, so many people are here with us, walking amongst us, moving forward despite so much negativity and uninformed judgement thrown their way.  There are many brave and thoughtful people who face these challenges every day who have decided to speak publicly about their experience with FASD, in order to help us all better understand.

Our son has already benefited from the better understanding we have of him as a result of the experiences shared by adults with FASD. They are awesome role models.

This list is a work in progress…and will be updated regularly.  We really admire the courage, caring and leadership it takes for people to share their experiences in this way.  We always welcome the chance to learn about the work of others with FASD who are using their experiences to help others – we know this list is only the tip of the iceberg.


Lee Harvey-Heath is an adult with FASD. Check out his  Diagnosed with Fetal Alcohol Spectrum Disorder (FASD). Lee founded FASD Devon and Cornwall and FASD Through My Eyes dedicated to helping people understand FASD. Here he has a message for FASD superheroes who might be getting bullied.  Love this guy and his optimism!

R.J. Formanek is an adult who was diagnosed at 47.  He has set up an amazing Facebook group that includes a lot of inspiring adults with FASD – Flying with Broken Wings.  There’s a great piece he wrote on “Getting Burned with FASD” that explores the problem people with FASD can have with language. Please check out this video interview with Jeff Noble as part of the FASDForever series.

Savanna Pietrantonio is an adult with FASD who is an FASD Survival Strategy Teacher and one of the administrators for the Flying With Broken Wings Facebook group.  Her insights into meltdowns were among the most important steps for our family’s personal journey toward greater understanding and were in fact the prompt for the first ever post on this blog and part of the inspiration for one of the most viewed posts, FASD Meltdowns.  For more information, please see her 8 Reasons for FASD Meltdowns and this article about her FASD service dog.

Screen Shot 2016-09-03 at 1.50.30 PM

Emily Travis – a speaker, advocate, counselor and pageant queen – talks about her life with FASD. This is part of the FASDForever series, by Jeff Noble.

Justin Veale – a young man with FASD, who offers advice on how to help people with FASD.  This is a brave and eloquent young man.  More about his story is available here.

Myles Himmelreich, “Living with FASD” provides an in-depth insight into what it’s like to grow up with FASD, as part of an ongoing video series by Edmonton and area Fetal Alcohol Network Society.  He describes what it was like as a young person trying to understand why he found some things hard to understand.

Andrew Petersen, is a Special Olympian who raises awareness about FASD with high school students and through his running.  He has been a popular vote top 10 finalist for the Runner’s World cover competition, seeking to be the first athlete with an intellectual disability on a major sports magazine cover.  He had more than 40,000 votes in 2016.  This was an amazing feat – bringing information to a wide audience about FASD.  You can read more about Andrew’s story here and follow his “Goes for the Gold” efforts via his Facbook group here.

Screen Shot 2016-09-03 at 6.23.01 PM

Kenny LaJoy – is a teen who writes about his experiences growing up with FASD on the blog he named “Uncommon Noggin” – where he and his mom Cindy write about their lives.  In this powerful post, Kenny talks about “Being Aware [of his FASD]: A Blessing or Curse?”

Rachel Jackson – is a teen with FASD who has started sharing her experiences. She has a new YouTube channel, MyLifeWithFASD Jackson. She was featured in an article about FASD Awareness in Medway and Kent, and “FASD Awernes” a piece she wrote for a teacher who asked her to share her truth without worrying about grammar or spelling has helped thousands better understand what it’s like for a teen with FASD.
fasd-awerneshi-my-name-is-rachel-jacksonim-going-to-tell-you-about-fasd-so-lets-get-started-i-amgust-one-of-the-million-children-with-this-problem-its-hard-with-this-condishon-as-y

Additional info:

Q&A on FASD is a closed Facebook group run by adults with FASD. It provides a space for those with some connection to FASD to ask questions about their experiences growing up with this condition and how they cope day to day. It is an exciting new initiative and a great resource for helping us all to better understand what life is like for those with FASD. You can click and ask to join the group, and someone will respond.

Rebecca Tillou – I was adopted at 1 month and diagnosed with FASD at 34 years, EFAN

Morgan Fawcett on living with FASD

Young Adults Living with FASD Share Their Experiences

Sasha’s Story

My Life With FASD – Francis Perry

Success Stories

Claire’s Story (a girl with FASD who was bullied, who set up the E3 Scholarship Fund, empowering kids to build self-esteem)

Blank Pages – a blog by Kesha Michaud, a young woman with ARND

The Best I Can Be: Living with Fetal Alcohol Syndrome or Effects and Braided Cord: Tough Times In and Out – books by Liz Kulp, a woman with FASD who together with her mom has used her experiences to help others.

Advertisements

3 thoughts on “FASD Role Models

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s