2006. Adam Tate
Adam Tate, from Leicestershire, is the founder of ‘Fahr Beyond’, the world’s only charity dedicated to supporting people with the rare, genetically inherited neurological disorder.
Adam was initially misdiagnosed with Fahr’s disease in 2014, after receiving a CT scan following a zip line accident. It took a further six years of medical research for Adam to receive a definitive diagnosis of Fahr’s Disease. The experience inspired him to launch ‘Fahr Beyond’ in 2016 to offer more information and a support network to other people diagnosed.
Fahr’s is a degenerative condition that can affect motor function and result in dementia, seizures, headaches, speech difficulties, stiffness or lack of movement in the limbs, eye impairments, and involuntary writhing movements of the body. Adam’s charity offers a range of support for patients and their families, including a social group to share their experiences and understanding, and is developing an online area for people to connect where they can seek and provide mutual support. ‘Fahr Beyond’ also supports Medical Professionals to recognise and accurately diagnose Fahr’s disease and supports the world’s first Medical Doctorate in Fahr’s Disease.
In a personal letter to Adam, Prime Minister Rishi Sunak said:
“I want to thank you for creating the world’s only charity dedicated exclusively to supporting people with Fahr’s Disease.
“You know from your own experience just how important it is to learn more about this very rare disease and to support others who are affected by it.
“So it is fantastic that your charity ‘Fahr Beyond’ is doing exactly that, as well as helping medical professionals recognise and accurately diagnose Fahr’s earlier.”
Alicia Kearns, Adam’s local MP, said:
“I am delighted that Adam’s outstanding work has been so rightly recognised through the Points of Light Award programme. Adam has turned what must have been an incredibly distressing diagnosis, into a cause for positive change and improved research for those living with Fahr’s. Fahr Beyond has done the most incredible work to not only support local families, but also families across the world – we are so proud of him in Rutland and Melton.”
“This is absolutely delightful news to have been awarded a Point of Light in recognition of my charity volunteering work through Fahr Beyond, helping to improve the lives of people with Fahr’s Disease and their families. This is not just a Point of Light for me, but it is a recognition of the incredible Fahr Beyond team. Interestingly, I was involved in 2014-2016 in identifying inspirational volunteers worthy of a Point of Light, so it is incredibly humbling many years later to become an awardee myself.”
See more about the ‘Fahr Beyond’.