Our advocacy brings patient experiences into conversations with researchers, clinicians, and organizations, and helps turn those conversations into opportunities for research.
Alongside our larger Facebook support community, we have created the Hypnic Jerking & Sleep Transition Research + Advocacy Working Group. This smaller group helps organize projects, build connections, and move research efforts forward.
Rebel Health. Inspired by Susannah Fox's book, we welcome different ways of contributing:
* Seekers find information, research opportunities, and potential resources.
* Networkers connect us with researchers, clinicians, organizations, and collaborators.
* Solvers help organize information, tackle problems, and develop practical next steps.
* Champions raise awareness, rally support, and help advance fundraising and advocacy.
You may identify with more than one role. Contributions can reflect your interests, skills, availability, and health.
Bringing Our Community Into the Conversation
Our advocacy includes attending conferences, participating in meetings, and sharing our community’s experiences with people who may help advance understanding of sleep transition instability. Participation in the Global Genes Rare Disease Drug Development Symposium in Boston opened conversations about genetics, sleep research, patient registries, and potential collaborations. We are continuing these discussions through follow-up meetings and outreach. These relationships help us explore possible studies, identify the expertise we need, and understand what it will take to move promising ideas forward.
Get Involved
We are looking for people who can help with research outreach, organizing registry and genetic information, finding grants, writing applications, and fundraising. You do not need to be a scientist or have experience in every area. Helping with one specific task can make a meaningful contribution.
To get involved, contact us about joining the Facebook Research & Advocacy Working Group.