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!


Help 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.


2019 SYS Research Plan

In 2019 FPWR will make 4 critical investments in order to advance SYS research: We aim 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

The projects identified for 2019 are critical to developing a strong research foundation that can support future SYS clinical trials and it is expected we will need approximately $250,000 to complete this work. 

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 22,2019 - Chicago IL
    I Gotta Guy Sausage Festival
    100% of proceeds fund SYS research. 



Sys research plan 2019 (1)