Alison Craig

Ali C Fitness Hub Awesome August Fitness Challenges

Fundraising for Cystinosis Foundation UK
£1,205
raised of £900 target
Cystinosis Foundation UK

Verified by JustGiving

RCN 1074885
We help and support cystinosis sufferers to increase understanding of cystinosis

Story

The Ali C Fitness Hub are coming together as a community to raise money for the Cystinosis Foundation by setting 2 fitness challenges for all of our members and friends.  All you need to do to take part is donate, and complete one, or both, of the challenges in August.  Otherwise please show your support by sponsoring us!

  1. A running challenge - complete 30 km or more over the course of August.  This challenge is particularly aimed at those who don't run that much, see what you can achieve!
  2. A fitness challenge of 3 exercises a day (Mon-Fri only): week 1 you complete 1 set, week 2 you complete 2 sets, week 3 you complete 3 sets.... all the way up to 5 sets!  The exercises are 10 jumping jacks, 10 push ups, 10 burpees or squats.  A great one to get the whole family involved and it can be done anywhere.

Jenni and Tom Kelly have been active members of the Ali C Fitness Hub from the start and took part in many classes over Lockdown; nothing gave me greater pleasure than seeing Tom grab his 2 bottles of fine red wine and use them as dumbbells!  Jenni is a professional dancer (amongst other talents) and brings great flexibility and balance to class.  Although work and life has made has meant live classes aren't as possible as they once were for the Kellys, they are advocates of my 'On Demand' You Tube subscription and I love hearing about the latest fancy hotel room location Tom has been working out in! 

Please have a read of the Kellys' story below. 

Jenni writes, "Just before the first lockdown our youngest daughter Eloise (known to all as Boo) was diagnosed with a genetic disorder called Cystinosis.  It is a very rare disease (about 1 in 200,000 births) and it means Eloise's body can't break down the amino acid cystine. The disease is progressive, and affects every cell in the body, meaning that over time, she will suffer more and more medical issues.  Looking at a bouncy (just turned) 3 year old with crazy hair and a good line in evil laughs, it is very difficult to understand how sick she is, but until medical advancements in the 1990s, the life expectancy for someone with Cystinosis was just 10 years old."

"There is a very effective medication for Cystinosis which greatly slows down the rate of progress of the disease, but it isn't a cure. The medication tastes horrible, so Boo hates taking it, and it has to be given every six hours, which means she has to be woken in the middle of the night to have her medicine.  The alarm ringing at 2am every day is obviously not much fun for us parents either...  The disease also means a number of other medicines including painful eyedrops which will have to be taken more and more often as Boo gets older."

"For such a rare disease, however, there is a large amount of amazing research going on, with some very promising treatments possible, and a lot of these research projects are being funded by the Cystinosis foundations of various countries around the world. Cystinosis Foundation UK have been instrumental in funding the development of a new prodrug called CF10, which, if successful, will mean that Boo only has to take medicine every 12 hours, or even possibly only once a day, which would make a huge difference to her and our lives. The Foundation have also recently been campaigning to make a new, improved version of the eyedrops available on the NHS which are significantly less painful and only have to be taken a few times a day, as opposed to every hour and the NHS have just agreed to provide them - yay!"

"As such a small charity any donation can make a huge difference to the Cystinosis Foundation UK. The charity doesn't just fund research - it helps people living with Cystinosis and their families and provides support and a community which is invaluable to us as a family.  Despite Covid, through the Cystinosis Foundation UK we have been able to connect with other families living with the disease and it has been incredibly reassuring to speak with older children and adults who are doing amazingly well and will be incredible role models for Boo as she gets older.  There are a lot more challenges to come but for the moment, Eloise is happy and healthy and, as a family, we are coming out of a difficult year with a new perspective and a fair amount of hope for her future." 

About the charity

Cystinosis Foundation UK

Verified by JustGiving

RCN 1074885
Provide support to anyone diagnosed with cystinosis, as well their families and friends Highlight the disorder to the medical profession and the wider community Support research into the treatment of cystinosis Work with other organisations to understand more about metabolic disorders

Donation summary

Total raised
£1,205.00
+ £276.25 Gift Aid
Online donations
£1,205.00
Offline donations
£0.00

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