Whether you’ve just recently received your child’s diagnosis of PWS or not, we can all agree those first moments are devastating and overwhelming. We’ve all been in that moment where we just wanted to stay in bed and cry all day and Jen Bender wasn’t excluded from this. About two years ago, when she received Leah’s diagnosis, she was equally overwhelmed, devastated–especially being in all the general forums where parents of older children were discussing their children’s current stages of development. She was completely overwhelmed with problems she may or may not encounter years down the line.
Jen decided to create a safe haven, where parents of infants and toddlers ages 0-2 years would be able to discuss their current stages of issues and developments in a private Facebook forum. Here, parents who have received a new diagnosis are able to receive the support they need without bearing on the weight of all the symptoms of PWS that are scattered on such a spectrum. Parents can connect with other parents of children with similar ages and share their PWS concerns and feats privately among their peers. This safe haven has been a major support system and has provided peace of mind for many parents dealing with the early stages of PWS. Jen’s involvement in the PWS community isn’t purely on social media. She has volunteered at several FPWR events including the FPWR research conference and proudly holds the title of Vice President of the Prader-Willi Syndrome Association of the Pennsylvania Chapter. She is also the Chair of our New Parents Committee, which is currently developing a hopeful and informative new parent packate to send out to parents of newly-diagnosed children. Her goal is to help families eliminate worry and heartache through support and education.
In addition to her involvement with PWS organizations, Jen has also hosted a wide variety of fundraisers for PWS. She has held Thirty-One parties, a Chinese auction, Dine to Donate functions, a miniature golf outing, airline ticket raffling, and she also hosted a One Small Step walk last year. Her One Small Step walk, alone, raised an impressive amount of $43,000!!
It goes without saying that Jen Bender is obviously a mom that would go above and beyond for her daughter, but she is also someone who channels all her grief and heartache into doing everything she can to make sure families can avoid those feelings. She highlights the greatest thing about this organization: FPWR is an organization made up of people who care to make a difference, people who know that the future is what we make of it. On behalf of all the newly-diagnosed families, thank you, Jen for making the first years so much easier than it would have been!