Our mission - quite simply, is to find a treatment and eventually a cure for Usher syndrome, the leading cause of genetically inherited hearing and sight loss, and to empower those living with this condition. To achieve this, we are: -raising funds to provide grants to scientific research that aims to halt/cure Usher syndrome as well aiming to increase collaboration, among organisations and researchers, into a cure/treatment for Usher syndrome. -raising awareness of Usher syndrome to increase understanding of living with dual-sensory loss. -helping the Usher community to stay informed by providing the latest research updates on our website, and across our social media platforms. -sharing stories from others in the Usher community through our social media platforms and on our website. We strongly believe that no one should feel alone on their journey with Usher syndrome.
External link for Cure Usher
Gateshead
Newcastle, Tyne-and-Wear, GB
Cure Usher reposted this
Thank you to the lovely team at Luxe Magazine uk for featuring me in their exclusive online magazine and helping to continue spreading awareness of Usher syndrome. If you fancy a five minute read about some of my journey, and the passion behind founding Cure Usher - here's the link 😊 https://lnkd.in/eeyfdvB6
Cure Usher reposted this
'We need to take action today for the Usher syndrome community who require immediate attention and recognition!' 📣 I'm SO thrilled, and proud too that Mark Ferguson MP for Gateshead (and my home town!) has agreed to become Chair of the Usher syndrome All Party Parliamentary Group, in which Cure Usher are Secretariat. 🎉 After a lot of hard work behind the scenes, and a brand new Government in force means we've had to start all over again. I'm back in Parliament in two weeks time and Usher syndrome is high on the agenda. 💼 If anyone reading this is connected to Usher syndrome please get in touch with your MP or Councillor to ensure our voice is heard 🗣️ And do head over to the charity if you want more information and dates for the Annual General Meeting in Westminster for your MP to attend. Everyone, including individuals, families, caregivers, healthcare professionals, researchers, clinicians, policymakers, industry representatives and the general public can participate in making a difference. 🌍 Thanks Mark, and we look forward to seeing you in the Houses of Parliament representing ALL those living with Usher syndrome. 🤝 📌 Usher syndrome is the leading cause of combined hearing and sight loss, and affects more than 11,000 individuals in the UK alone. Mark Ferguson MP Kim McGuinness #UsherSyndrome #CureUsher #ActionNow #RareDisease #GeneticCondition #Support #Awareness #Community #NorthEast #TogetherWeCanMakeADifference
Cure Usher reposted this
Only two tables left to the Cure Usher Ball 2024 21st September Hilton Gateshead. Tickets are details found at www.cureusherball.com . Steph McGoven hosting Joe McElderry singing Chelsea Halfpenny singing Charlie Richmond auctioneer The House Poet DJing Jeff Hordley DJing An evening filled with television stars and prizes so unique you’ll never get them ever again . Come help support the Usher Syndrome community.
Cure Usher reposted this
We will keep pushing Carrie, rest assured. Nothing will stop us. Keep the faith because I truly believe a cure is coming.
Global Marketing Leader @ eProductivity | DEI | Chair Sales & Marketing Working Party Strategic Mailing Partnership, Non-Profit Trustee
Someone I love very much has Usher Syndrome. She is 10 and vibrant and clever and perfect. Since she has Usher Syndrome she was born deaf and will lose some or most or all of her eyesight at some point in her life. I had never heard of the disease until a year ago. I bet you haven’t either. But there are millions of people, many of them children, living with it. As it is a rare disease, funding is hard to come by. Please take a read of one of the charities (lead by the fierce Jo Milne) aimed at finding a cure during Deafblind Awareness Week. Of course, donate if you can! #deaf #blind #deafblindawareness
Cure Usher reposted this
We will keep pushing Carrie, rest assured. Nothing will stop us. Keep the faith because I truly believe a cure is coming.
Global Marketing Leader @ eProductivity | DEI | Chair Sales & Marketing Working Party Strategic Mailing Partnership, Non-Profit Trustee
Someone I love very much has Usher Syndrome. She is 10 and vibrant and clever and perfect. Since she has Usher Syndrome she was born deaf and will lose some or most or all of her eyesight at some point in her life. I had never heard of the disease until a year ago. I bet you haven’t either. But there are millions of people, many of them children, living with it. As it is a rare disease, funding is hard to come by. Please take a read of one of the charities (lead by the fierce Jo Milne) aimed at finding a cure during Deafblind Awareness Week. Of course, donate if you can! #deaf #blind #deafblindawareness
Cure Usher reposted this
Well Christopher Owens has done it again! The second Pattern Slow Networking event was as incredible as the first. Chris creates the kind of atmosphere where you can relax; it never feels like the kind of networking event that brings out all of my social insecurities; instead it was relaxed, informal, and welcoming. The water cooler chat with Jo Milne (founder of Cure Usher) was one of the most inspiring 15 minutes I’ve experienced in a long time. My only disappointment was that I had to leave early and couldn’t join everyone for a beer at the end; maybe next time.
Cure Usher reposted this
Grateful for the chance to be asked to contribute to The QT 'One Wish, One Paragraph, 100 People'- and that's my wish for the new UK Government to consider for each of us connected to Usher syndrome. “My wish is the new Government will bring back into focus the UK Rare Disease Framework, enabling those living with Usher syndrome access to a faster diagnosis, increasing awareness and funding for research into rare disease.” Cure Usher
Cure Usher reposted this
Global Marketing Leader @ eProductivity | DEI | Chair Sales & Marketing Working Party Strategic Mailing Partnership, Non-Profit Trustee
Someone I love very much has Usher Syndrome. She is 10 and vibrant and clever and perfect. Since she has Usher Syndrome she was born deaf and will lose some or most or all of her eyesight at some point in her life. I had never heard of the disease until a year ago. I bet you haven’t either. But there are millions of people, many of them children, living with it. As it is a rare disease, funding is hard to come by. Please take a read of one of the charities (lead by the fierce Jo Milne) aimed at finding a cure during Deafblind Awareness Week. Of course, donate if you can! #deaf #blind #deafblindawareness
Cure Usher reposted this
So proud to be a part of this popular event tomorrow! Wizu Workspace at Portland House, Newcastle upon Tyne. Pattern Christopher Owens Steve White Cure Usher
Final call and reminder for the Pattern Slow Networking and Co-Working day at Wizu Workspace Portland House in Newcastle. There’s a couple of spaces available through cancellation so if it’s your vibe get signed up on the link below. We will be joined by Jo Milne from Cure Usher and also hear from Wayne Bryant from Innovation SuperNetwork. 9am, come and go as you please and if we’ve worked hard there’s a cheeky pub flyer at 4.30.
Cure Usher reposted this
Final call and reminder for the Pattern Slow Networking and Co-Working day at Wizu Workspace Portland House in Newcastle. There’s a couple of spaces available through cancellation so if it’s your vibe get signed up on the link below. We will be joined by Jo Milne from Cure Usher and also hear from Wayne Bryant from Innovation SuperNetwork. 9am, come and go as you please and if we’ve worked hard there’s a cheeky pub flyer at 4.30.