Advocacy by the Community

"One voice can change a room, many voices can change the world ..."

Parents and caregivers have been advocating for their STXers from day one. All throughout the diagnostic journey and as our children have grown, we have been learning, sharing, protecting, and arguing for them. Advocacy ensures our STXer’s voices are heard and their rights are protected. It is also a very effective way to raise awareness so the broader world outside our homes knows about this rare genetic disease. Let’s all continue to raise our voices so we can make an even bigger impact everywhere we can. Whether it is speaking at a town hall, interviewing with the local news or mainstream media, partnering with other organizations, presenting at a conference, or simply posting on social media, we can all do the next right thing.

Take a look at some of our STXBP1 community advocates in action below. And contact Cristina Brennan via email to strategize on ways you can help with advocating for STXBP1-related disorders right now.