The Road We've Shared

By Stephanie Holland (AKA Josh’s Mom)

Until recently, I had an aversion to Down syndrome research, mostly medical research.  (My admission is on record here.)  I’ve been keeping an open mind as I learn more and getting to know some of the researchers has helped change my perspective.  There’s so much that we don’t know, especially when it comes to adults who have Down syndrome, and research, done well, can help answer some of the questions we have as parents. 

In my recent update on that first article I wrote about getting to meet Dr. Harpold and my desire to learn more about the difference in life expectancy due to race.  We also interviewed  Drs. Bardhan and Parisi from NIH about DS-Connect so that our community could learn more about the work they’re doing and how we as families can help.

Those who have read my posts before will probably be familiar with the name Dr. George Capone.  I’ve talked about him many times including posts about how he saved my sanity as a new parent, and what he said on World Down Syndrome Day at the United Nations.  Most recently I shared his message from the Down Syndrome Center at Kennedy Krieger in their summer newsletter.

A particular entry in the newsletter caught my eye.  It was a research study on “Depression and Sleep Disorders in Adults with Down Syndrome.” (I’ve also written about the 321 session on depression and adults with Down syndrome.) 

I took a big step after reading that piece and contacted the research coordinator asking for more information.

This quote jumped into my head and wouldn’t leave… So, my friends, I took a leap of faith.  Today I spoke to a very nice research coordinator at the Down Syndrome Center.  We discussed what exactly the study entailed, what kinds of tests they would be doing, and what they hoped to accomplish.   We also talked a bit about Josh and whether he would be a good candidate for the study.  

I don’t know if he’ll be selected to participate or not – but I feel that I’ve taken an important step in the right direction.  I know we’ll be talking about research and how important it is for our community for a long time to come.  Many people have said that Down syndrome is one of the least funded major genetic conditions.   I have to wonder if part of the reason for that is a lack of interest from parents, like me.  

Whether or not we end up in this particular study, I’ll be on the lookout for ways I can contribute to the body of knowledge that helps our loved ones live longer, happier, and healthier lives.  (Maybe I’ll convince a few of you to join me.)