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Donna Redgrave hasn't added a story.
Myself
I am Donna Redgrave and on June 14th 2015 I will embark on my very first marathon (Liverpool Rock 'n' Roll Marathon)
Cause
I am embarking on this challenge for a very rare Genetic Disorder known as HNPP Hereditary neuropathy with pressure palsies, which is very close to my heart as both my dad and sister have it.
HNPP is a slowly progressive, hereditary, neuromuscular disorder which makes an individual very susceptible to nerve injury from pressure, stretch or repetitive use. When injured, the nerves demyelinate or lose their insulating covering. This causes episodes of numbness and weakness in the injured area, which are referred to as the ‘pressure palsies'. These episodes can be mild and more of a nuisance than anything, or so severe almost all movement in the affected limb is impossible. They may last several minutes to months. Because the symptoms can come and go, and most neurologists have not yet heard of or seen a case of HNPP, it can be very difficult and lengthy process to be diagnosed. http://www.hnpp.org/
I will be running for both my dad and sister, who daily deal with the severe effects of HNPP and because it is so RARE and unknown especially in the UK I am aiming to raise as much needed awareness and funds as possible!
Fundraising
There is no designated charity for HNPP with it being so rare. I will be raising funds for the Northern Genetics centre - Centre for Life Newcastle University where my dad and sister are under the care of. They have NEVER had any personal donations and any funds raised will hopefully make a huge difference to the department and the work they do for HNPP.
Your Help
I will appreciate any donation no matter how little or small to raise funds for such a rare disorder. Let’s make a difference!
I would also appreciate if you share this page with other friends or on social media, the more coverage for HNPP the better.
Final Words
Let’s raise as much needed awareness and funds for HNPP, very few people are aware of the disorder. My family has been affected by HNPP and we have already been on a rocky journey unsure of where to find information, help and support. In many ways and I feel the challenge is only the beginning to highlighting the Genetic Disorder and raising funds towards vital research to make a huge difference to the treatment and care of those affected. It is a personal challenge having had a genetic test myself and being fortunate not to have the disorder I feel this is my part in making a difference to those who are affected to the best of my ability, and the donations will make such a difference to the Northern Genetics Centre who had NEVER had personal donations.
Lets change things and make a difference for HNPP
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