Gene Therapy Trials Update
If you are following the gene therapy trials in the USA you will have seen that the 6th and final patient was dosed at the end of October. AVROBIO, the company that is developing the… Gene Therapy Trials Update
History of Cystinosis – UK Disability History Month
by Ami Froehlich, Trustee 18 November to 18 December marks Disability History Month, with this year’s theme focused on Disability, Health and Well Being. UK Disability History Month (UK DHM) celebrates historical contributions of people… History of Cystinosis – UK Disability History Month
Procysbi Available in Wales
Following a decision by the ‘All Wales Therapeutics and Toxicology Centre’ Procysbi will now become routinely available in the NHS across Wales to treat cystinosis. We took part in the appraisal process last year (December… Procysbi Available in Wales
Alex Hutchison
Joined: February 2020 My daughter, Morven, was diagnosed with nephropathic cystinosis in 2010, at 9 months old. As well as keeping busy looking after Morven and her younger sister and brother, I work full time… Alex Hutchison
Karthikeyan Ekambaram
Joined: February 2020 I am Researcher in a Midlands based University. My son was diagnosed with cystinosis in 2018. I found that the foundation has been doing a fantastic work in supporting those who live… Karthikeyan Ekambaram
David Benford
Joined: January 2009 My daughter has cystinosis and is a patient of the Queen Elizabeth hospital in Birmingham. I am a company director and work in technology. I enjoy my work with the Foundation and… David Benford
Secretary – Tom Kenning
Joined: February 2014 I have nephropathic cystinosis and am a patient of the Queen Elizabeth hospital in Birmingham, where I had a kidney transplant in 2008, The main focus of my role is that of… Secretary – Tom Kenning
Chairperson – Will Newman
Joined: February 2020 My granddaughter, Ellie, was diagnosed with nephropathic cystinosis in 2016, just after her 1st birthday. Her twin sister, Molly does not have the condition. I’m a retired librarian and am keen to… Chairperson – Will Newman
Marathon Man Raises £1134
In October last year Tom Wood ran his first ever marathon to raise money for CFUK. Sporting one of our t shirts Tom finished the Manchester Marathon in the commendable time of 3 hrs 53… Marathon Man Raises £1134
Our Experience with the Student Voice Prize
It’s good to talk – It’s good to listen(Our experience with the Student Voice Prize) One of Cystinosis Foundation UK’s aims is to help inform the medical profession about cystinosis, not only to help with… Our Experience with the Student Voice Prize