When Will Newman’s granddaughter, Ellie, was diagnosed with cystinosis 5 months ago he wanted to help raise awareness of the condition. On 9th December he had ‘Ellie’ shaved into his head, a fantastic, albeit unusual idea for a fundraising campaign! Sometimes it’s the most unusual ideas that attract the most attention – Will’s campaign has been featured in a local newspaper and he has been interviewed by a local radio station.
Will originally hoped to raise £450 for Cystinosis Foundation UK, he has smashed his target and raised over £2000 on his JustGiving page. We would like to thank Will for this incredible achievement, we would also like to thank professional hairdresser Richard Skilton, of Richard Martin Hair and Beauty, Chapel-en-le-Frith. Richard did a great job at shaving ‘Ellie’ into Will’s head, as can be seen in the pictures below.
Will has also been very proactive in campaigning for NHS approval of the new slow release cysteamine medication, Procysbi. He has produced a YouTube video which he has sent to the government and his local MP.