My Nephew and Prader-Willi Syndrome

Last week, I shared a list on why I run. One of the reasons was for people with Prader-Willi Syndrome (PWS), including my 5-year-old nephew Graham. This rare genetic disorder affects a person’s ability to feel full and they lack normal hunger and satiety cues. With developmental delays, a battle with obesity, and challenges to do any type of normal physical activity, the path to a “normal” childhood and life will be drastically different for Graham.

My sister and brother-in-law have been fighting tirelessly since the few hours of Graham’s life when they knew something was wrong. Their involvement with the Foundation for Prader-Willi Research, locally and nationally, is relentless. They raise money, participate in research, and are great friends with other families dealing with PWS. They help families who recently find out about the diagnosis on how to deal with the day to day struggles and how to get through.

My brother-in-law wrote a beautiful piece about their story. I cannot do it justice, so I won’t. This provides a little bit of insight into the struggles they are going through with Graham and the hope they have for a cure.

If you meet my nephew, you will meet a boy who lives in the moment. He will greet you with the biggest hug, ask you all about your day, and dance the night away. He makes friends wherever he goes, loves school, and adores his big sister. To Graham, there are no limits.

When I lace up my Asics for s run, I think about Graham and all those with PWS. With every mile I complete, I think about the miles Graham may never get to run, but I know he’s danced the equivalent of 100 marathons.

This weekend, I will participate in a walk to raise money for the foundation. We will gather with friends and family, share stories, and walk to raise money and awareness for PWS. It’s one of my favorite events of the year. If you have are interested, you can donate to the walk and to help fund research efforts.

I’ll be running a half marathon (it may be a marathon, but I haven’t decided) in the fall. I’ll be raising money for PWS and will be setting up the link soon. If you’re looking for a cause to support, please consider the Foundation for Prader-Willi Research.


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