When Dr. Edgin started thinking about running, she was motivated by a desire to get stronger and healthier. She had begun to notice the effects of neglecting exercise while she balanced her family duties with a full schedule as an assistant professor at the University of Arizona and as the Director of Memory Development Disorders Laboratory. However, to succeed she knew she needed a goal. Then she had a light-bulb moment when she remembered the Any Race, Any Place for LuMind RDS program. So, she signed up to run the Dr. Gann’s Diet of Hope Cinco de Mayo 5K for LuMind RDS to honor more than 300 individuals with Down syndrome whom she has worked with over the last 15 years because she CARES about the Ds community. Now, she has a race partner in her colleague, Dr. Stephen Cowan, and a lot of family support from her husband Fabian Fernandez.
“First, it seems like the running events have been a great way to increase awareness and fundraising for LuMind, and we both want to support the effort,” noted Dr. Edgin about her decision to commit to fundraise for LuMind RDS. However, it has been the relationships with the Ds community that energized her to take action and sign up. “I think I have more Facebook friends [that have] children with Down syndrome than not! I have watched many of them grow up. I keep in contact with their families and check in on them. If I am going to run for a cause, this is it.”
Dr. Edgin has her share of fans in the Down syndrome community because of her work to uncover the effects of sleep & sleep disturbances on cognitive functions like language development and her willingness to consult with parents and school groups about how to best administer and interpret the standardized tests that are available. We recently checked in with Dr. Edgin to see how her training was coming along and to see what families can expect to learn from her upcoming webinar, Tea with Dr. Edgin —The Motherload on Sleep & Learning with Special Guest on Goal Setting & Healthy Activities for Individuals with Ds.
Are you staying as motivated as you were when you signed up with your busy schedule?
I turned 40 last year and this is catching up with me! I thought [running for LuMind] would be a good way to build in some motivation to train and I was right! I ran 5.5 miles in the last two days alone.
I run from my house to campus, and it has been fun to make it to certain landmarks there 🙂 I am [also] using the Runkeeper app on my phone. It reminds me of my runs and keeps increasing my pace and distance. It intermixes long distances and interval training (which I find fun).
My co-investigator, Stephen Cowan, has joined me. He is a big runner already, so he is providing encouragement for me to keep going. Fabian (my husband) is also bugging me to keep on track 🙂 Last night he was watching a documentary about links between weight, inflammation, and Alzheimer’s disease after 40 years. I was out the door running in 5 minutes! Plus, I just feel so much better after running, so it rewards itself.
One important component to testing people with Down syndrome is to give good examples and practice for the test prior to administration. So, we build in a number of practice trials. This helps to warm them up.
Another important component is the presentation of the task in simple and clear language. Many times people with DS have difficulty testing because the language demands of tasks are too extensive.
Finally, people with DS easily read the emotions and effect of others and this greatly affects their performance. So, in my lab we know that we need to set our expectations high for what they will achieve in testing and keep our affect high during testing.
Thank you, Dr. Edgin, for your contributions to Down syndrome research, your time and support!