Breaking Boundaries: Bringing Parents and Researchers Together at the FPWR Research Conference

We're pleased to bring you this guest blog by Ali Shenk, FPWR Volunteer and Conference Participant

As usual, the recent FPWR conference in San Antonio, TX, did not disappoint! Kudos once again to the Viroslav family and the rest of the San Antonio team for earning the right to host the conference in their amazing town! The presenters were wonderful and covered a variety of topics. Meagan Michie, world-class swimmer with the Paralympics and Special Olympics (and she has PWS), gave a heartwarming account of her struggles and how she has overcome them one by one. Listening to Meagan and seeing her succeed gives any parent hope for what is possible for our loved ones with PWS! Several researchers, including Drs. Yossef Tam and Jeffrey Zigman, gave updates on their work with various hormones and mechanisms that might be involved in driving obesity and appetite related to PWS. It is so exciting to see their theories and work in action, as well as their plans for the direction of future research! Dr. Anne Schiemann gave a great overview of gastrointestinal issues that are often involved in PWS, with special attention to choking, acute GI distress, and efforts to… in her words, “keep it moving.”

Theresa Strong and Jessica Bohonowych got us up to speed with recent developments in research and an overview of the recently funded and upcoming research projects sponsored by FPWR. Jessica provided a comprehensive look at the upcoming Global PWS Registry (ready to launch soon!) and stressed how crucial it is for families to get involved in the registry so that we are ready to go when studies requiring data related to PWS and study participants need to be available. One of the most exciting talks was that given by Tom Hughes, CEO of Zafgen. The buzz surrounding Zafgen’s current investigation, the drug Beloranib, has been going around the PWS community, and Dr. Hughes spoke to the state of Beloranib’s clinical trials and the potential applicability of the drug in PWS. The drug is still actively being studied so results aren't available yet, but he is hopeful that it will help our community.

In what represents a great new direction for the conferences, Elizabeth Roof from the Vanderbilt Kennedy Center and Lauren Roth gave some points of reflection and led us in brainstorming strategies for families learning to cope with how PWS affects their lives. As we know that the stress of PWS can affect both the person who has it and the whole family system, we were reminded of the importance of taking care of ourselves. Hannah Viroslav, older sister of Olivia, who has PWS, gave a wonderful presentation about the stages through which she has traveled along the journey of having a sister with special needs. Many were touched by hearing how Hannah has both struggled and been blessed by having Olivia in her life.

As always, we were encouraged by the leadership of Keegan & Tanya Johnson, Alice Viroslav, and Susan Hedstrom! We are so lucky to have these dedicated and driven folks in our corner! In San Antonio, new friendships were formed, we were encouraged with new information, and once again, we were inspired to eliminate the challenges of PWS for our loved ones.  

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.