Make it Happen for SYS

Schaaf-Yang syndrome (SYS) is a relatively new genetic disorder only first being identified in 2013. The full spectrum of SYS features still need to be defined and while we know a disruption of the Magel2 gene results in SYS, we are not year clear on HOW this disruption leads to the characteristics of SYS. In order to advance SYS research, we need to better understand the role of Magel2 at the cellular level, develop key resource tools, such as cellular and animal models for pre-clinical studies, and better define the natural history of SYS.

We need your help! Join us in our mission to find treatments, and a cure, for Schaaf-Yang syndrome!

FUNDRAISEHelp Raise Funds

When you set up a fundraising page, it's easy to reach out to family and friends!


Make a personal donation

Support our research plan as we work for treatments and a cure, for SYS.



Download our Schaaf-Yang Program Report to learn more about the work we are doing.


SYS Research Plan

FPWR is making critical investments in order to advance SYS research: We are working to:

  1. Generate antibodies for MAGEL2 
  2. Generate MAGEL2 cell lines 
  3. Carefully characterize MAGEL2 animal models 
  4. Identify and fund SYS research that will improve our understanding of SYS

These projects are critical to developing a strong research foundation that can support future SYS clinical trials.  

We can do this! But How?

We invite every member of the SYS community to join us in 2019 as we raise the funds necessary to complete our research strategy. Here are 3 ways you can help. 

  1. Set up a fundraising page 
  2. Create a Facebook fundraiser
  3. Make a personal contribution

It's easy to get started fundraising, just ask 5 people in your network to make a donation.  Need help getting started? Email us at and we will provide you the tools, tips and resources you need. 

Together, we can make this happen!


Upcoming Fundraising Events:

  • August 18, 2022 - Chicago IL
    I Gotta Guy Sausage Festival
    100% of proceeds fund SYS research.