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Description
Thank you for your interest in volunteering with SynGAP Research Fund. SRF relies on volunteers to help support the work we do. We're always looking for people willing to bring their time, skills and creativity to further the mission. To see how you can help, please click the Volunteer button above to review our opportunities.
If you have any questions, please contact us at volunteer@curesyngap1.org
You can learn more about our organization and community on our website: https://curesyngap1.org/
Join our team today!
Additional Details
Location
Virtual
Keywords
Latest Updates
Latest Updates

Select Roles For Interest:
Select the roles you are interested in signing up for here. When you are done, click 'Continue' at the top.
Role Description
If you'd like to explore something other than what is presented in the specific roles below, please select this option. When you submit your registration form, you'll be able to indicate various areas of interest.
Impact
Each and every volunteer is critical to the success of the SRF mission. Please join us today!
Skills Required
All skill levels are welcome. Some skills currently in demand: fundraising/development, event planning, administration, graphic design, communications.
Training Required
This varies depending on roles/tasks. Training is available for some roles.
Role Description
This team is the direct liaison to the families and our community. They welcome new families, provide support, promote study opportunities and collect feedback on what the community needs from the organization.
Role Description
This role is part of the Community Activation Team. Make sure all SYNGAP1 families in your geography know you. Connect with all families at least once a quarter - every 3 months. Update contact information How are they doing? Do they need help? Do they want to volunteer? Attend quarterly meetings with the State Ambassador Program. Community Activation Team: This team is the direct liaison to the families and our community. They welcome new families, provide support, promote study opportunities and collect feedback on what the community needs from the organization.
Skills Required
Communication, Empathy
Role Description
The Census is part of the Community Activation Team. The volunteer is responsible for keeping track of the number of families by state. Community Activation Team: This team is the direct liaison to the families and our community. They welcome new families, provide support, promote study opportunities and collect feedback on what the community needs from the organization.
Skills Required
Organized
Maximum Weekly Time Commitment
1 hour(s)
Role Description
This role is part of the Community Activation Team. You will be asked to help organize, promote and moderate the different online community meetings we offer. Community Activation Team: This team is the direct liaison to the families and our community. They welcome new families, provide support, promote study opportunities and collect feedback on what the community needs from the organization.
Skills Required
Zoom
Role Description
This role is part of the Community Activation Team. This is a critical role for the organization and for our families. You will be responsible for reaching out to families and invite them to studies they are eligible to. You will receive the appropriate training to answer the questions they may have. Showing that we can recruit for studies is also very important as it will keep bringing more opportunities. Community Activation Team: This team is the direct liaison to the families and our community. They welcome new families, provide support, promote study opportunities and collect feedback on what the community needs from the organization.
Skills Required
Communication, Organization
Training Required
You will receive training and information on the studies you will be recruiting for.
Role Description
This is team leads our communication and marketing efforts. It includes our blog, newsletter, social media and website.
Role Description
This position is responsible for planning, creating, and posting much of the social media content on behalf of SynGAP Research Fund. Other responsibilities include monitoring of Instagram (and other platforms as directed), daily if possible, for liking & reposting (in Stories feed) content from other SYNGAP1 families and partners (tagging as appropriate), adding SRF posts to Stories feed, monitoring comments & messages on SRF Instagram posts and reply or bring to others' attention as necessary, and other tasks as assigned. This role is part of the Communication and Marketing Team.
Skills Required
This volunteer should have a high level of familiarity with social media, excellent computer skills, and the ability to easily learn new computer programs.
Minimum Weekly Time Commitment
5 hour(s)
Role Description
Assist with designing/creating tiles, literature (flyers, brochures, presentations, reports), apparel, etc. This role is part of the Communication and Marketing Team.
Impact
Helps SRF announce events and spread the word about SYNGAP1.
Skills Required
Some graphic design skills are beneficial, but we have templates; computer skills are helpful.
Training Required
Knowledge of Canva or other design or desktop publication software is welcomed!
Role Description
Post to social media, make minor changes to website pages. This role is part of the Communication and Marketing Team.
Impact
Updating content is critical to keep our website current and maintaining/expanding our social media presence.
Skills Required
General computer knowledge necessary; specific training can be provided.
Training Required
Website editing experience is helpful for some tasks.
Role Description
Work with others to write about their experiences. This role is part of the Communication and Marketing Team.
Impact
More stories help spread awareness of SRF & SYNGAP1.
Skills Required
An editor's eye (grammar, spelling, story details/congruity)
Weekly Time Commitment
2 - 5 hour(s)
Training Required
Knowledge of Google Docs/Google Drive is helpful.
Role Description
Help with making changes to the website and improve our SEO. This role is part of the Communication and Marketing Team.
Skills Required
wordpress, SEO
Role Description
This team is focused on the following: Cultivating Major Donors, Family Fundraising, Foundation grants, Sponsorships, Events , Tracking and Reporting.
Role Description
Cultivating Major Donors - Reviewing data of major donors, running phone/email/direct mail campaigns to thank donors, update them on new projects, incite follow-on donations This role is under the Resource and Mobilization Team.
Training Required
Salesforce
Role Description
Support Families who are setting up online fundraisers or events. eg: birthday fundraisers, newly diagnosed families, Sprint4Syngap, Million Dollar Bike Ride, etc. This role is under the Resource Mobilization Team
Skills Required
Project Management, Communication
Role Description
Events - Working with Syngap families to plan, coordinate and support their events - Caren Gala, Syngap Soirée, Golf Scramble, Cars for Kai and Slap4Syngap (pickleball) This role is under the Resource Mobilization Team
Skills Required
Event Planning
Role Description
Foundation grants - Identifying and completing inbound/outbound grant proposals.
Skills Required
Grant Writing
Role Description
Lead the automation and execution of the end-to-end grants life cycle, including grant applications, advisory board review, agreement execution and operations (progress reports, etc). Help track grants in automation systems, e.g. SalesForce.
Impact
Giving scientific grants is core to the mission of SRF. It is critical that a transparent and robust process is followed to ensure that SRF's precious resources are being maximized.
Skills Required
While some scientific / legal / professional background would be helpful, it is not required.
Weekly Time Commitment
1 - 10 hour(s)
Training Required
Salesforce.
Role Description
Many ways to be involved here: donor relations, family fundraising support, foundation grants, tracking & reporting, events.
Impact
This work is a critical part of raising the resources needed to fund the research that is at the heart of the SRF mission.
Role Description
Assist event organizers with planning, communication, coordination.
Impact
Successful events help move the mission forward.
Skills Required
Project planning, strong communications, ability to troubleshoot quickly.
Role Description
Provide others with templates, guidance, and editing of their blogs. Seek writers to summarize events & other special days throughout the year. May be asked to write an occasional original blog or recreate one from another source. Update annual blogs. Coordinate activities of other editors.
Impact
This position will continue to spread the word about SYNGAP1 and the SRF community to bring awareness to the community and the world.
Skills Required
Should have good grammar and computer skills.
Weekly Time Commitment
3 - 6 hour(s)
Role Description
Sponsorships - reaching out to businesses to garner sponsorships for fundraising events and our scientific conference. This role is under the Resource and Mobilization Team.
Role Description
This team is focused on building and maintaining strong partnerships with pharma companies, key umbrella groups in the rare disease space and other patient advocacy groups.
Role Description
Track follow up status with our pharma partners and stay up to date on industry news/announcements/public meetings etc.
Impact
This is a description
Maximum Weekly Time Commitment
2 hour(s)
Role Description
Stay up to date on what other rare disease organizations are doing: research, family support, recruiting strategies, fundraising etc. This role is under the Partnership team
Role Description
Our PR Lead will coordinate media coverage to raise awareness about the organization's activities. Collaboration with SRF event organizers, Managing Director, and BOD is essential to develop strategies and media campaigns to "pitch" to outlets. (See Syngap.Fund/SRFPress for past news features.)
Impact
The Public Relations Lead plays a crucial role in promoting a positive image and fostering effective communication for SRF and its cause.
Skills Required
Ideally, this person should have strong written and verbal communication skills, knowledge of public relations principles and practices, the ability to work collaboratively with others. and excellent organizational and time management skills. Hours listed are estimated and may fluctuate based on events scheduled.
Role Description
Stay up to date on our non pharma partners and any follow up that needs to happen. These include our data platform partners, our wearable partners etc.
Role Description
Coordinate attendance to our partners meeting to make sure SRF is represented and notes are uploaded and shared.
Role Description
Elevate SRF influence and visibility at state level with seats on state councils Encourage state advocates into leadership/policy training programs to strengthen SRF advocacy expertise (and also boosts first goal) Collect information needed to develop a family resource guide Establish relationships with HHS, FDA, CMS, NIH, AHRQ, OCR (both HHS & DOEd) based on individual strengths/interests
Role Description
If you have a science/medical background and are interested in joining the medsci team please select this role. We will be in touch with you to learn more about your background and discuss the different opportunities available in the Medsci team.
Skills Required
Science/Medical background
Role Description
Track payments to both internal and external stakeholders. Prepare budget forecasts to ensure financial stability and efficiency. Process tax payments and returns accurately and on time.
Skills Required
Quickbooks
Role Description
Provide support with our tech stack.
Role Description
If you are interested in helping out with the annual conference planning or onsite please select this role and we will be in touch with more information.
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