Tag: Usher syndrome

Sina-Drums up funds for Usher syndrome research

CUREUsher were recently delighted to have received the support of Sina, a renowned drummer with nearly a million subscribers on YouTube, after she chose to ask her fans to help raise funds for CUREUsher to mark her birthday! During what are difficult and unprecedented times for many charities in the UK including CUREUsher, this was… Read more »

Ashton’s Fundraiser

Nearly five years after receiving his cochlear implants the family of 7-year old Ashton Andrews were devastated to learn recently that Ashton has Usher syndrome which is the leading genetic cause of deafblindness. Moved to action to help try and find a cure for Ashton, they are holding a fundraiser in March with funds from… Read more »

CUREUsher co-finances its first Usher syndrome research study

CUREUsher is very pleased to officially announce its co-financing of a new research study in a collaboration effort with Stichting Ushersyndroom, a foundation based in the Netherlands. This exciting new research study will focus on minigene therapy as a possible treatment for retinitis pigmentosa associated with Usher syndrome 2C. The study, which is receiving a… Read more »

World Sight Day 2019

Today is World Sight Day (WSD), an annual day of awareness to focus global attention on blindness and visual impairment. According to the World Health Organisation(WHO), there are approximately 2.2 billion people globally that have a visual impairment or blindness, of whom at least 1 billion have a vision impairment that could have been prevented… Read more »

Patients First

By: Daniel de Boer First and foremost, CUREUsher has created a welcoming community for everyone affected by Usher syndrome ? patients, loved ones, caregivers, and the medical community. It means a lot to me that I am able to share my story here. As the father of a son with a cystic fibrosis, I am… Read more »

Changes (part 4)

Final in a series of blog post written by Lynne Morris…? I have been back to the hospital many times since diagnosis. In 2010, I had to have cataract surgery for both eyes.? Not at the same time obviously! I was the youngest patient, when I went for the first eye.? I was so nervous… Read more »

Changes (part three)

Part three in a series of blog post written by Lynne Morris… I couldn’t really talk to my brother who was diagnosed alongside me. We both reacted differently.? We were both at different stages in our lives.? He was still living at home, therefore, didn’t have the same responsibilities that I had to take care… Read more »

Changes (part two)

Part two in a series of blog post written by Lynne Morris… I could have had one last blast in the car and driven home from my nan?s where I’d left it parked.? However, after a very long and serious discussion with my parents, it was decided it wasn’t worth the risk.? What if I… Read more »

Changes (part one)

This is part one in? a series of blog posts written by Lynne Morris… Changes It was a routine eye test at Specsavers that started it all, with a rather dishy older man.? I giggled like a little girl in my head every time he looked into my eyes.? It’s a very up close and… Read more »

Conquering the mountain. (part four)

Final post of four in a series of? blog posts written by Deborah King of how she conquered Mt Kilimanjaro this year despite the challenges she faced along the way due to Usher syndrome. I knew I should have begged Gavin to let me pay for a helicopter down, he didn?t seem to think it… Read more »