Fundraising for a personal cause - Spinal Muscular Atrophy UK
In some sad news, a deeply loved and long-standing member of the GriffinLab, Claudia Rathje and her husband, Bill Rathje-Morris's baby Nora was recently diagnosed with spinal muscular atrophy (SMA). Claudia was part of both Darren Griffin and Peter Ellis's labs at the Uni of Kent, and this news has been a tremendous shock for everyone. Accordingly, lab members have set up an online appeal to raise funds for Spinal Muscular Atrophy UK.
SMA is a rare and devastating genetic condition that leads to progressive loss of motor neurons and muscle wasting. Untreated, the prognosis is extremely poor, with a life expectancy of less than two years. Fortunately there is some hope on the horizon for Nora, as one of the first babies in the UK to be approved for gene therapy (Zolgensma) which may be able to halt the deterioration in muscle function.
We would be grateful if you would consider donating to this appeal, and also share the link as widely as possible. Darren and Peter will each be matching all donations made, up to a limit of £1000.
https://www.gofundme.com/f/ergo-uok-for-smauk
Many thanks,
Peter and Darren
