Community scavenger hunt at The Glen

Socializing kittens at Orphans of the Storm animal shelter

Hanging with our college buddies at LFC

Community trip to Didier Farms

Making pumpkin recipes for fall!

Volunteering at Feed My Starving Children

Volunteering at Bernie's Book Bank

Starting a new job placement at Trustmark

Community Trip to Lambs Farm

2. It sounds like you are not only a great self-advocate, but a great advocate for others with PWS. Why do you feel it is important for you to speak about your experience with PWS?

I didn’t have many older kids in my area with PWS to look up to – friends or role models. But I’ve met a lot of people in the area who are younger than me with PWS. I’ve gone through a lot of the hard stuff and feel like I can help guide them through it. I can tell kids with PWS that they can do the things other kids can do. It might take some time, but kids can be who they want to be by working hard toward their goals. Lots of adults came up to me at the conference and said I was an inspiration and gave them hope for their kid’s future. That made me feel really good.

3. How else are you involved with FPWR? How has being involved with FPWR benefited you?

We do the One Small Step Walk every year with my family and friends to help raise awareness about Prader-Willi Syndrome and money to find a cure. This year my team raised almost $9,000 for research. It’s benefited me by having a bigger community of parents and kids who know what I’m going through. I am now in a clinical trial funded by FPWR. I hope this new drug or one of the other drugs in trial right now will help control my hunger and make me more independent and make a better future for me and other kids with PWS.

4. Is there anything else you would like to tell me about your experience at this conference?

A lot of my family came down to hear me speak and support me. I had seven people in the front row as my cheering section and a bunch of other people around the country watching my speech online. They told me I did a really good job and they were proud of me.