By Louis Chapman-Coombe
A Bramley based national charity, Cure INAD UK, is about to celebrate its first anniversary.
The charity launched last year on the steps of Leeds Civic Hall to raise funds and awareness for Infantile Neuro Axonal Dystrophy (INAD), a rare neurological condition.
It was set up by the family of Bramley seven-year-old Zoe Lightfoot, who has had the condition since she was a toddler.
In the year since its launch, the charity has had major success in its fundraising campaigns, and was recently able to give a grant of over £7,000 to University College London (UCL)/Great Ormond Street Hospital.
Bramley resident Christine Hamshere, a trustee and co-founder of Cure INAD UK, said: “[The past year has been] challenging but fun. Our fundraising has been done by incredible people.”
She highlighted three notable fundraising challenges.
- Ben Manuja is currently cycling alone through Africa for Cure INAD UK, and has raised over £800 for the charity. During this challenge he aims to cycle 9,000 miles. He can be sponsored here.
- Katie Lee competed in the ‘Race to the Tower’ challenge, running 80km and climbing over 7000ft in one weekend to raise nearly £2,000 for the charity, and
- Chris Taylor (who has a heart condition) and Ben Scott walked the Manchester Marathon, raising over £1,000 in the process with the money being split and Chris donating his share to Cure INAD.
Miss Hamshere, of Moorland View, also spoke about the charity’s achievements this past year. She said that “just being able to contribute to the research… push the research forward to get a cure” was the best achievement the charity had achieved this year, which they were able to do following the grant of over £7,000 to UCL/Great Ormond Street.
According to the charity’s website, the grant given to UCL/Great Ormond Street will be used to fund biomarkers.
The benefits of these biomarkers are that they “help doctors make the diagnosis earlier in patients, improve the understanding of disease, provide a more accurate picture to families of what the future holds for their child, assess how severe the disease is and how quickly it is progressing and help assess the effectiveness of upcoming novel treatment in future clinical trials”.
Miss Hamshere added that “samples have been taken from children all over the world, and they’re using some of [the grant from Cure INAD UK] to get those samples submitted”.
The charity had also gained a donation from Direct Line of £500.
“I’m hoping we get more established”, Miss Hamshere said when discussing the plans for the future of Cure INAD UK. “We’re hoping to have greater success in securing funds and getting established”, she said.
The journey of her family, and in particular her seven-year-old daughter Zoe Lightfoot, who was diagnosed with INAD when she was two-and-a-half, has been well documented here at WLD. We spoke to Christine about her daughter.
“She’s ok,” said Miss Hamshere. “We know what to expect day to day”, but also added that Zoe was “slowly deteriorating”.
“Zoe has been an incredibly brave little girl. She is my inspiration, she is my driving force.”
More information on Cure INAD UK can be found here. If you wish to donate to any of the fundraising events please visit the charities website.
