£20,540 Raised – Thank You for Helping Us Be Their Voice
Thank you so much to all our supporters who doubled their donation and shared our social media posts during the Big Give Small Charity Week between June 22nd and 29th.
This was the first time we’d taken part in this Summer challenge after our campaign application, ‘Help us be their Voice’ attracted £10,000 of matched funding from the Postcode Neighbourhood Trust.
We have had huge success for 16 years in the Big Give Christmas Challenge, reaching our target each year. It’s a time that our families and supporters look forward to, some saving up their loose change all year round ready for the challenge which starts in early December.
This new challenge was a complete unknown and there was some apprehension about how we’d do at the start of the week.
But, once again we needn’t have worried as our amazing supporters donated what they could to help us finish the challenge with a grand total of £20,540.
The money raised will help us fund our first Family Advocacy and Care Navigation Lead at Reverse Rett. We have been advocating and helping families ‘unofficially’ since we launched Reverse Rett in 2010. We now feel that there is an unmet need in the Rett community with complicated and often hostile systems to navigate.
We are excited about recruiting someone who can help families every step of the way, whatever challenge they may face.
Families like Simone’s:
“I’m mum to two beautiful little girls, Edie and Ivie, who both have Rett syndrome.
When we first received their diagnosis, life felt incredibly overwhelming. There were so many unknowns, so many worries, and at times it felt like such a lonely place to be.
Then we found Reverse Rett.
They’ve given me so much more than information. They’ve given me a community, friendships, and the reassurance that we’re not walking this journey alone. They’ve helped me understand Rett syndrome so much better, taught me how to support my girls, and helped me make sense of the incredible research and gene therapy trials that are giving so many families hope for the future.
But more than anything, Reverse Rett has completely changed the way I see my daughters.
They’ve helped me realise that Edie and Ivie are so much more than their disability. They’re two amazing little girls with huge personalities, full of love, laughter, hopes, dreams, and their own way of communicating with the world. They deserve the same opportunities, the same happiness, and the same belief in them as any other child.
They’ve helped me see just how capable, resilient, determined, and happy my girls are. Instead of focusing on what Rett syndrome takes away, I’ve learned to celebrate everything they can do and all the joy they bring to the people around them.
Reverse Rett has also given me the knowledge and confidence to fight for my girls—to ask questions, to advocate for them, and to make sure their voices are heard. They’ve shown me that the thoughts, fears, emotions, and even the little victories we experience are all valid, and that so many other families truly understand exactly how we feel.
Through the events, the support, the research updates, and the incredible community they’ve built, they’ve given our family something we all need: hope. Hope that the future can look different. Hope that the research being funded today could change the lives of children like Edie and Ivie tomorrow.
I honestly don’t know where we’d be without Reverse Rett. They remind us every day that we’re not alone, that our girls matter, and that there are people working tirelessly to give them the future they deserve.
From the bottom of my heart, thank you. Thank you for believing in our children, for supporting our families, and for giving us hope when we need it most. It means more than you’ll ever know.”
