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

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

Maintain the status of SRF's relationships with biopharma companies. Use automation software to ensure we have an accurate and up-to-date database of all pharma companies we engage with. Generate reports for follow-ups or other actions are required.

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.

Maximum Weekly Time Commitment

2 hour(s)

Training Required

Salesforce.

Role Description

Assist with designing/creating tiles, literature (flyers, brochures, presentations, reports), apparel, etc.

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.

Weekly Time Commitment

1 - 5 hour(s)

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.

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.

Weekly Time Commitment

2 - 5 hour(s)

Training Required

Website editing experience is helpful for some tasks.

Role Description

We are looking for advocacy representatives from each state to help families living in that state who may be having difficulty navigating systems (educational, legal, healthcare, etc.).

Impact

Helping SYNGAP1 families is central to SRF mission.

Skills Required

Expertise in any area that a family might require assistance understanding and fighting for proper consideration

Training Required

No advocacy experience required; SRF has advocates who can help you with resources and guidance.

Role Description

Work with others to write about their experiences.

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

Our Design Lead is responsible for the maintenance & updating of the SRF Style Guide, coordination of designs of tiles, brochures, logos, merchandise, etc., and approval of all designs while maintaining established consistency. Delegation to design assistants &/or approved outside resources is encouraged.

Skills Required

Graphic design background would be helpful.

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

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

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

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

We are looking for representatives from each state to provide a point of contact for other SYNGAP1 families living in your state. Assist with inquiries about SRF registries, studies, and other resources, as well as guiding new families during the initial stages of their diagnosis.

Impact

By helping other families, you will provide local support, easing their transition into a life with a rare disease.

Training Required

Experience is not required; assistance will be provided for all state representatives along the way.

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.

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)