By Emma Roth and Lauren Schwartz-Roth, FPWR Board Member
Lauren Roth and her daughter, Emma, share their experience of participating in the Oxytocin Clinical Trial at Vanderbilt University. Join this duo through their journey and learn more about their experience participating in a clinical trial! When Emma was only 5 weeks old and still in the ICU, she was diagnosed with Prader-Willi syndrome (PWS). This was a difficult day for our family. As time went on, Emma developed, and grew stronger and more charming each day. But no matter how hard she works there are still so many challenges she encounters each day because of PWS. She is now 14 ½ years old in Middle School and doing very well. She is at a healthy weight, has friends, a supportive school environment, her teachers love her and she is getting good grades. BUT life is still a struggle every single day. Emma constantly thinks about and worries about food. She has behavioral struggles and difficulty with change and transitions. She struggles with anxiety. Emma is a smart girl and she is aware of her symptoms due to PWS and where her trouble spots are. It is painful for us to see her struggle. We tend to be a family who says, “Ok we have this problem. What can we do about it?” Now for the first time it feels like there might be some light at the end of the PWS tunnel. When we found out about the upcoming PWS clinical trials, our family really felt like there was some hope on the horizon, that maybe just maybe there could be medications or other intervention that could improve Emma’s life in a substantial way. We started looking into what we could do and began looking into how we could participate in a trial. I talked to Emma about it and she was also eager to help, especially to find something to help her and her friends “be less hungry and have fewer tantrums.” We decided to find out more about the Vanderbilt University
Oxytocin study with Elizabeth Roof. From the moment we reached out to them to get more information, they have been incredibly helpful, answering all of our questions quickly, and working with my work schedule to set up the best times for us to fly to Nashville. They also will pay for all of our travel costs. So although it will take some time and effort to fly to Nashville and follow through with the daily medication regimen, we feel that it is well worth it to participate. Participating in these clinical trials is the best way we can help make the future brighter for Emma and others like her living every day with all the struggles that PWS brings.
Emma says it is important to help her friends who have PWS, “I worry a lot about them.” So, we are on our way to Nashville very soon…..
You can follow Lauren and Emma's journey through this ongoing feature in our newsletter as well as on our FPWR Facebook page!
For updated information on PWS clinical trial opportunities and to sign up for a monthly PWS Clinical Trial Alert, visit the PWS Clinical Trials page.