Are you looking for a meaningful way to use your skills and experience to make a real difference? The Schinzel-Giedion Syndrome Foundation is looking for passionate and motivated individuals to join our Board of Trustees.

As a small but ambitious charity, we are dedicated to supporting families, raising awareness, and driving forward vital medical research for Schinzel-Giedion syndrome (SGS)—a rare and life-limiting genetic condition. Established in 2019 by parents of children with SGS, we now represent families worldwide, working tirelessly to improve the quality and length of life for those affected.

Why Join Us?

Make a Real Impact – Your expertise and dedication will directly contribute to improving lives.

Be Part of Groundbreaking Research – We are actively driving and supporting new medical research.

Global & Inclusive – Work alongside a passionate, international team, with virtual meetings making it easy to get involved from anywhere.

Flexible & Rewarding – A commitment of just 2-4 hours per week can create lasting change.

Who Are We Looking For?

We welcome applicants from all backgrounds and levels of experience, whether you’re a seasoned Trustee or taking your first step at Board level. If you’re committed to advocating for children with life-impacting, rare genetic disorders and their families, we’d love to hear from you.

We are particularly seeking individuals with expertise in:

🔹 Finance – Accounting, budgeting, financial planning & systems

🔹 Fundraising – Strategy, corporate partnerships, grants, and events

🔹 Marketing – Digital marketing, PR, social media, brand awareness

🔹 Data & Analytics – Data management, insights, reporting

What’s Involved?

• Attend up to 6 virtual board meetings per year (via Zoom, approx. 2 hours each).
• Contribute 2-4 hours per week flexibly, helping to drive key initiatives.
• Serve a minimum term of 2 years, with the option to extend to 4 years.
• Take a hands-on role in shaping the future of our charity.

Ready to Make a Difference?

If you’re passionate about making a real impact, we’d love to hear from you! Whether you’re ready to step into a Trustee role, or exploring other ways to contribute, there are many opportunities to support our mission and help drive meaningful change for children and families affected by Schinzel-Giedion syndrome.

Contact Nuala Summerfield, Chair of The Schinzel-Giedion Syndrome Foundation, at nuala@sgsfoundation.org or Dana Bradley, Trustee at dana@sgsfoundation.org for an informal chat.

Initial application deadline: 15th May 2025 (but applications are reviewed year-round).

Find out more about us at www.sgsfoundation.org

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