PWS People: Dedicated Researcher Joins Our Cause AND Our Community

We're pleased to bring you this guest blog by Yinna Ng, FPWR Volunteer 

Our PWS community is a strong and cohesive one that achieves great things. While a large part of it is built on the determination and strength of families and friends of those with PWS, we would like to highlight an individual who has no familial connection to PWS, yet she has chosen to become such an essential part of our PWS family. Rachel Wevrick lives in Edmonton, Alberta with her husband, Joe Casey, and their two children. She and her husband are both professors at the University of Alberta. But why is she so important to our community? Dr. Wevrick became involved with PWS in 1993. After she completed her Ph.D. at University of Toronto and her Postdoctoral Fellowship at Hospital for Sick Children, Dr. Wevrick went to California to work with Dr. Uta Francke at Stanford University to perform research on human genetics. Dr. Francke was researching a number of genetic disorders, but one stood out among the rest because of the lack of information: Prader-Willi syndrome.

For the next three years, Dr. Wevrick made PWS her focus. Then in 1996, it was time for Rachel and her husband to make a move back North, but this time to Edmonton, Alberta where they took on their positions at University of Alberta. Dr. Wevrick continued to conduct her research on PWS after moving to Edmonton and has been funded by FPWR on three separate projects. The most recent project being funded by FPWR is her study of Leptin dysregulation in control mice and mice lacking the gene Magel2. This study can potentially find a treatment that can regulate hunger by bypassing their brain's poor ability to sense and respond to leptin. Dr. Wevrick has presented at numerous conferences to speak about her animal models. She has also been reviewing grants for FPWR and PWSA for the last 10-15 years as a peer reviewer. When asked why she does this, she answered, “I enjoy doing it--it helps me write better proposals, I can learn who is doing what, and I can provide expertise to make sure funding dollars are spent on projects with high likelihood of success and that answer questions that are important for further understanding PWS.”

Dr. Wevrick will be working with Theresa Strong to lead the research portion of the IPWSO conference in 2016. Their goal is to make it an interactive workshop, where the scientists don’t just discuss what they have already done, but also propose strategic plans for future research. She is extremely excited to be involved in this. While Dr. Wevrick may not have a personal connection to PWS, she believes in a hopeful future for our children as long as we all continue to work together. She wants PWS parents to keep loving our children and keep raising awareness. Thank you, Dr. Wevrick, for all that you have done for our community and we are thrilled that you chose to become a part of it!

Topics: Research

Susan Hedstrom


Susan Hedstrom is the Executive Director for the Foundation for Prader-Willi Research. Passionate about finding treatments for PWS, Susan joined FPWR in 2009 shortly after her son, Jayden, was diagnosed with Prader-Willi Syndrome. Rather than accepting PWS as it has been defined, Susan has chosen to work with a team of pro-active and tireless individuals to accelerate PWS research in order to change the natural history of PWS. Inspired by her first FPWR conference and the team of researchers that were working to find answers for the syndrome, she hosted her first One SMALL Step walk in 2010 and began the development of the One SMALL Step walk program which now raises over $1.5 million a year for PWS research.

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