Always on
This project successfully funded on 6th November 2025, you can still support them with a donation.
FORGE - SPONSORED SNOWDON WALK August 2025
London, Greater London, United Kingdom
First target reached!
All donations contributing to our target, and beyond, have the potential to transfo...
Aim
We are raising vital funds to support children globally with rare disease SAVI (STING-associated vasculopathy with onset in infancy).
On August 30th, a team of friends and supporters of the charity Foundation to Overcome Rare Genetic Errors (FORGE), will meet together at the base of Mt. Snowdon to attempt a climb to raise much needed funds for rare genetic disease SAVI (STING-associated vasculopathy with onset in infancy).
SAVI was first identified in 2014. It is a life-limiting condition often associated with skin ulceration, loss of digits and progressive lung disease. Appearing from birth, its rarity often means that it takes some time for diagnosis, with many clinicians unaware of the condition and inexperienced in its management. Treatments will often vary widely depending on global location and the process can be patchy, unequal and isolating as a result.
The charity Foundation to Overcome Rare Genetic Errors was set up in 2023 after founding Trustees became aware of the need for increased action and support for those with rare genetic disease and conditions, following a diagnosis of SAVI affecting a child within their own family.
Rare genetic conditions have traditionally been considered economically non-viable for research by big Pharma companies, with so few individuals affected globally. However, with recent advances in genome research, a real opportunity now exists to transform the lives of those born with these conditions. Breakthroughs in genomic research in these areas hold the potential to be transferable to other genomic conditions, increasing the value of any succcesses achieved. For the first time, there is the opportunity to look ahead with real hope for the future for all those affected.
Our Snowdon climb on August 30th is one of FORGE's fundraising activities for 2025, designed to support the charity's work in moving forward medical research, increasing information and awareness of these conditions, and developing the advocacy and services available for children affected by SAVI and for their families.
Funding method
Keep what you raise – this project will receive all pledges made