Zoe Napier

Zoe Napier Jumps for Helena and CRDN Charity

Fundraising for Cambridge Rare Disease Network
raised of £500 target
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Participants: Emily Mortimer, Helena baker, Lisa Griffin, Juliette Dianne Newton, Caroline Churn
We are building a thriving network to support people affected by rare diseases


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My good friend, Helena Baker, was born with Fibular Hemimelia, a rare congenital disorder that meant she had one leg shorter than the other, a tiny club foot, lots of missing ligaments in my leg and body and a fierce determination not to let it stop her from doing anything. Well, except hockey :-) However, Helena (with one leg now) is skydiving with us on 4th June ...
Helena grew up having more operations than hot dinners, but never had a diagnosis.  Eventually, aged 49 and a half, she was told her diagnosis and the fact that nothing her mum could have done during pregnancy would have changed the outcome.  Having that diagnosis earlier would have made a world of difference to Helena's parents.  
CRDN is aiming to fund specialist nurses to support families, adults and children with rare diseases, from the named disorders to the unknown and un-named.  Having had access to such a support service would have made such a difference to Helena and her family.   Please help me to help CRDN and ease some of the fear and distress for other families. CRDN covers East Anglia including ESSEX (despite having Cambridge in its name). I would really appreciate any donation as believe me flying a plane is very different from jumping out of a perfectly good one !!

About the charity

CRDN is the infrastructure that unites patients, advocates, experts and leaders to address the challenges faced by people affected by rare diseases. By sharing knowledge and experience, and working together, we improve the journey towards better diagnosis, treatment and support for rare families.

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