We are a small grassroots charity set up by a mother whose son was diagnosed with Stargardt's Disease when he was 7. The mother who is the co-founder and CEO of Stargardt's Connected has set up the charity to address the unmet need of not having a condition specific patient group for Stargardt's and covers all areas around the UK.
We are a rapidly growing charity with increasing demands. The charity has built relationships with different stakeholders including affected families, clinicians, pharma and researchers and collaborates with partner organisations to help meet the needs of the community. We have held 2 very successful annual conferences and our inaugural Stargardt's research network meeting in November 2024 was first of its kind. We have found that our community finds a lot of comfort in meeting others with Stargardt's with feedback such as: “I have finally found my tribe”.
As the charity and the Stargardt’s community grows, the CEO is at capacity and can not solely provide the much needed services to the community. We are in the process of recruiting a part time Engagement and Operations Co-ordinator through other grant sources and need the grant funding to continue to fund these core staffing costs.
Currently, it has only been the CEO who has been responsible for organising all the activities, raising awareness and building important networks. However, as she oversees the whole charity, her capacity and resources are stretched.
We are therefore asking for funds to cover core costs:
• So that the CEO can continue to be salaried and continue her vital work of raising awareness, advocacy, supporting the community and work with stakeholders in furthering research.
• To continue to fund the part time Engagement and Operations Co-ordinator to support the CEO in the delivery and expansion of the services.