The University of Pittsburgh Genetic Counseling Students Volunteer:
The University of Pittsburgh Genetic Counseling students were offered the opportunity to spend a day providing childcare at the Parent Project Muscular Dystrophy Regional Roundtable meeting. This event was organized as a collaborative effort between the Pittsburgh Muscular Dystrophy Association (MDA), and the Parent Project, so that families affected by Duchenne Muscular Dystrophy (DMD) could participate in a research roundtable. While the students spent time with children affected by Muscular Dystrophy and their siblings, their parents were able to engage with clinicians and researchers in order to learn more about DMD. The following students reflect on their experience:
Having the opportunity to spend an entire day
with children with DMD and their siblings was definitely a memorable
experience! We were really able to have the chance to see that these children
are still: playing the same games, having fun, and goofing around, just like
other children their age. It was especially interesting to see the interactions
of the siblings that attended. Even though they were older, they were always
aware of the younger children around them, and were constantly working to
include everyone in their activities. I am very happy to have had the
opportunity to work (and play!) with these children!
-Samantha
It was great to be able to spend some quality
time with kids with DMD and their siblings.
We got the opportunity to find out about the support systems in place
for families, and see them in action. I
enjoyed learning about each of the families, and I also got to hear about
summer camp (which I’ve been assured is the greatest place on earth). I also know quite a bit more about Batman!
-Natasha
I had a blast volunteering at the DMD
roundtable event and having the opportunity to spend time with children and
families affected by DMD. Terri Ellsworth and the entire DMD community made us
feel welcome and expressed appreciation for our help. The kids’ ages ranged
from 4 years old to 17 years old, and I had to work extra hard to keep up with
them all day long. We did so many activities, including coloring, playing
Batman, and blowing up balloons. They were some of the most inquisitive,
fun-loving, and exploratory children I have ever met!
-Rebecca
I had a great time playing with the kids with DMD and their siblings. We played all the classic games for kids - superheros, balloon volleyball, and drawing. I enjoyed interacting with the kids for who they are - kids who love to play and have fun.
-Megan H
It was an awesome experience to volunteer at the DMD roundtable event and to get to know the kids with DMD and their siblings. We got to play a variety of games together such as hide-and-seek, balloon volleyball, and battleship. This was a wonderful way for us to connect with the kids individually and as a group. I enjoyed seeing how they supported one another regardless of age or familiarity.
-Alyssa
