Volunteer Roles
Looking for ways to get involved with and support the STXBP1 Foundation? We are looking for additional help in the following roles. Please complete this form or email info@stxbp1disorders.org to learn more and get involved!
Community Outreach & Support
Interact and engage with STXBP1 community to promote ongoing events, educational sessions, fundraisers, and other initiatives supporting the mission of the STXBP1 Foundation. Act as a resource to STXBP1 families, including newly diagnosed families, by guiding them to information or programs of potential interest. Identify and bring together community members passionate about the same areas of need. Offer additional support to the Foundation Board in identifying and addressing community concerns that arise.
Events
Involved with the planning, promotion and implementation of events such as conferences and meetings, family gatherings, virtual meetups, and fundraising events.
Fundraising
Involved with developing fundraising ideas, implementing fundraising initiatives, and collaborating with event volunteers to promote and implement specific fundraising events. Also, will support other STXBP1 families, friends and organizations with fundraising events that are independent from events organized by the STXBP1 Foundation.
Graphic Design
Design and develop graphic material to use for STXBP1 Foundation activities such as events, educational materials, and social media.
Grant Writing
Research grant opportunities and write grant proposals. Grants may be scientific, education, advocacy or community support-focused.
Media Campaigns
Use your communication skills or media contacts to further STXBP1 awareness and bring more attention to community needs in the areas of research, funding, etc.
Program Ambassador
Individuals who are passionate and knowledgeable about a specific program (i.e. Simon’s Searchlight) who will guide others in the community who are in need of assistance in that area. Foundation will conduct quarterly calls with Program Ambassadors to share information and updates.
Science Education
Develop educational materials and written content for the STXBP1 community to explain research articles and on-going developments in treatment and care.
Social Media and Blogging
Develop content for Foundation blog and social media, including Facebook, Twitter and Instagram. Content can be sourced from researchers, media, community or Foundation Board.
Technology
Deploy and support software applications used by Foundation including website and contact management.
Please complete this form or email info@stxbp1disorders.org to learn more and get involved!