Newsletter - August 2022
FASD Awareness Month is Coming Up!
September is FASD awareness month! It is an expansion of international FASD awareness day, which is September 9th. The ninth day of the ninth month is to raise awareness of the effects of alcohol use during the 9-month pregnancy. Please join us to advocate for and raise awareness of FASD, and to celebrate the strengths and successes of individuals with FASD!
Last Chance for FMF Connect Enrollment!
Last day to enroll! If you or someone you know wants to test out this intervention in your pocket, you have until August 31th!
Participants needed for a Randomized Control Trial (RCT) for FMF Connect!
Are you a parent or caregiver of a child aged 3-12 with Fetal Alcohol Spectrum Disorder (FASD) or Prenatal Alcohol Exposure (PAE)? You may be eligible for this study!
FMF Connect is an app designed to help parents and caregivers of children with FASD or PAE by providing useful information to manage their children’s condition and gain peer support.
FMF Connect is looking to enroll caregivers in the United States who have an iOS device (iPhone or iPad). This trial would include completing surveys and testing out the app on your time! Monetary compensation is available for participants.
Already enrolled? Help us spread the word! You can send other parents and caregivers to our website or have them email us!
Please email fmfconnect@urmc.rochester.edu if you have any questions.
Adults with FASD Invited to Fill Out Surveys for Adult App Project
Adults needed for Fetal Alcohol Spectrum Disorder (FASD) mobile health app research!
The next step of the Adult App project is here, which involves an online surveys for adults with FASD to provide feedback on initial design prototypes. Adults with FASD around the world can participate as long as they are 18+ and have sufficient enough English proficiency to complete the survey.
This app hopes to provide resources, tools, and information to improve physical health and quality of life for adults with FASD or known prenatal alcohol exposure.
Click the link below to go to the survey!
Please consider sharing the survey on your relevant platforms: https://bit.ly/FASDApp
Already enrolled? Help us spread the word! You can send other parents and caregivers to our website or have them email us!
Email Emily_Speybroeck@URMC.rochester.edu with any questions.
Research Corner
Dog-A Pilot Study Examining the Effects of Music Training on Attention in Children with Fetal Alcohol Spectrum Disorders (FASD)
Gleichmann et al.
Children with Fetal Alcohol Spectrum Disorders (FASD) often have difficulties in auditory, sensory, and executive functioning (such as attention). Some studies have shown that musicians have better sensory, motor, and other brain functioning than non-musicians. Therefore, researchers at the University of New Mexico did a pilot study to see if music training could help with attention in children with FASD.
The researchers recruited 20 children (12 boys, 8 girls) from 5 to 10 years old with FASD through the University of New Mexico. The children were randomly assigned to 2 groups. In the music training group each child received 5 classes in musical keyboard training. The second group was a control group that did not receive musical training. All children completed the Attention Networks Test (ANT) before and after the intervention to examine changes in attention over time. Researchers also collected EEG data to measure the effects of music training on brain function.
Although this was a small pilot study, results showed some preliminary evidence for changes in brain function for the music training group. This exciting result supported the idea that musical training might help with improving attention for children with FASD. More studies in the future are needed to confirm this finding in larger samples. It would also be important to test the longer-term effect of musical training to further support this idea.
It’s time to sign up for the “5K Your Way” Run FASD!
This event helps build FASD awareness in your community and could help connect you with others in your area! You DON’T have to run, you can walk, roll, or break it up into little chunks throughout the month of September. You can register here and get your official Run FASD swag ($5-$35).
If you want to join a group, check Facebook pages to see if anyone has organized an FASD Run in your area! If not, consider starting one yourself and invite people to join! There are a couple Runs that this newsletter has seen and are listed below!
In-Person Events:
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September 4th and 18th
Team Edeyn FASD 5k: 7:00pm at Milavek Lake in Frederick, Colorado -
September 9th
UC San Diego FASD 5K: 2:00-4:00 pm at NTC Park at Liberty Station -
September 9th
Sarasota 5k Run/Walk: 5:30-8:00 pm at The Florida Center for Early Childhood -
September 10th
St. Augustine 5k Run/Walk: 9:00-10:30 am at Treaty Park in St. Augustine Florida -
September 10th
Marinna 5k Run/Walk: 9:00-10:30 am at Citizens Lodge Park in Marianne, Florida -
September 10th
Rebecca’s Runners: 9:30 am-12:30pm at Voorheesville Rail Trail -
September 10th
Kansas FASD Support Network 5k: 11:00 am- 1:00 pm at Meadowbrook Park, Prairie Village, Kansas -
September 14th
EUFASD Conference 5k Run/Walk in Norway: Clarion Hotel Tyholmen, Arendal, Norway -
September 17th
Ocala 5k Run/Walk: 9:00 am-10:30 pm at Sholom Park, Ocala, Florida -
September 17th
Orlando 5k Run/Walk: 9:30-11:00 am at Lake Eola Park, Orlando Florida -
September 26th
Rochester 5K Your Way and Family Picnic: 11:00 am-2:00 pm at Genesee Valley Park in Rochester, New York. Eventbrite: https://www.eventbrite.com/e/2022-run-fasd-rochester-site-tickets-396575296387
Don’t see a run in your area? Start your own! You can create your own “Run FASD 5k” event here: https://runfasd.org/run-fasd-meet-ups/
You can stay up to date on in-person runs at: https://runfasd.org/events/category/run-fasd-meet-up/
Want to donate? You can join a fundraising team! Funds raised go to FASD United for programs and services: https://runfasd.org/campaign/2022-team-run-fasd/