FASD: Nothing About Us Without Us

For the last week of the 2018, 2019 and 2020 edition of 99 Days to 9/9 or FASDay, the voices and information belong to individuals with FASD.

Day 92 & 93 are quotes from two presenters at the:

8th International Research Conference on Adolescents and Adults with FASD.

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Although there are thousands of published articles on FASD, there remains limited research specifically on adolescents and adults with FASD. As individuals diagnosed with FASD continue to age, the “need to know” across a broad spectrum of areas continues to be critically important for identifying clinically relevant research questions and directions. Continuing on the work of seven previous conferences, there remains a clear need to examine relevant global research, programs and policies. What does existing or emerging research tell us? Are the results transferable from country to country and/or from laboratory to real life? Are there clinical implications of results from any of these areas of which we should be aware? What are the changes in our thinking, practice and directions that will be required to improve outcomes? What are the implications for the future?

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For more information, and to view the Changemakers Presentions, visit:

8th International Conference Webcasts.

Nothing About Us Without Us

The above phrase was the theme for the above conference. That is why I chose to end the (2018/2019) 99 Days journey by giving the last words to individuals with FASD.

For Days 94 – 98 I used the answers to a question I asked on the largest Facebook Group for individuals with FASD (that caregivers and others who support people with FASD are allowed a membership too), Flying With Broken Wings.

If you could tell a caregiver, a professional, a teacher, a researcher or the world one thing about you or FASD what would it be?

2019 & 2020

Day 94 belongs to Gina

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Day 95 belongs to Danielle

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Day 96 belongs to Flora

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Day 97 belongs to Jennifer

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Day 98 belongs to Lorde

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2018 Posts (I kept because I didn’t use all of these quotes in 2019 & 2020)

Day 95 belongs to Maggie, Nicky and R.J.

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Day 96 belongs to Danielle, Wea, and Anna

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Day 97 belongs to Herbert, Flora, and Gina

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Day 98 belongs to Jennifer

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Day 99 belongs to Lorde

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In Closing

Thank you for once again joining me on a 99 Day Journey of all things Fetal Alcohol Spectrum Disorder. Thank you to those who gave their permission to share information, to the Pioneers who brought FASD into the public spotlight, to the advocates and researchers who continue to work tirelessly for recognition, support, prevention and awareness.

Personally, thank you to those who joined for the first time this year and to those who continue to share the posts and provide encouragement.

Special thanks to Jodee Kulp and R.J. Formanek who provide me with an outlet to share with the Red Shoes Rock Campaign and for inviting me to be part of this International Movement.  Thanks to Claudio Diaz and Denise Edwards and the others who have translated the 99 Days into Italian, Afrikaans, Spanish, Polish, and other languages – this truly expanded the journey around the world.

Tomorrow, September 9, we will wrap things up on International FASD Awareness Day.

If you’d like to go back and visit any of the days, you can do so here: 99 Days to 9/9 FASDay: Master Post.

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