Health and wellbeing

Funding level: £5,001 to £10,000

Description

Adrenoleukodystrophy (ALD) is a rare complex genetic brain disorder affecting previously healthy and ‘normal’ males between the ages of four and 60. ALD damages the white matter in the brain meaning those with full symptoms become completely dependent on their loved ones or carers. ALD is a devastating terminal illness with most dying within one and 10 years of symptoms developing.
The symptoms of ALD begin with behavioural changes such as hyperactivity, withdrawal or aggression and poor memory. In children, these symptoms are often ignored or put down to typical attention-seeking behaviour – at best, the child might be diagnosed with ADHD or being on the autistic spectrum. In adults these symptoms can cause family breakdown and isolation: males without support networks can become "lost in the system" or worse.
As the illness develops, symptoms include blindness, deafness and seizures with progression to a semi-vegetative state and inability to speak or move. ALD can only be treated by bone marrow transplant before symptoms show. This means that, in most families, one member must be lost to ALD in order to be able to offer life-saving treatment to others.
The ALD Life Community Weekend brings together ALD sufferers and their families, alongside doctors, researchers and scientists from around the world to support each other and discuss how ALD affects them. It is the only UK event that gives sufferers and their families the chance to talk openly about ALD and focuses on activities designed to put attendees at ease and encourage interaction. These include an ice-breaker quiz, children’s activities accessible to all ages and abilities, workshops on condition management and self help, specific sessions for bereaved parents, siblings and young people as well as informative and educational presentations. It also gives medical professionals the opportunity to hear directly from those affected and presents a rare opportunity to progress research ideas which would otherwise take months, or even years, to develop.
It truly is a lifeline for the ALD community, best summed up by past attendees:
"When my son was first diagnosed with ALD at 4 months, it was a very scary, worrying and unsure time. We got in touch with ALD Life, who were our saviour, [they] make you feel so cared for, supported and are always there when we need them. They told us about a weekend away they organise to get families together who are in the same position as us. I was a little unsure at first as it's a very personal thing to deal with and we really didn't know what to expect, but we went and what a fantastic weekend we had. The charity weekend to me is my ALD family who I sooo look forward to seeing, it's a time for us to get together to laugh, cry, think and learn from each other. I love these people so much. My son is 10 years old now and every year asks "Is there a charity weekend this year, I really want to see my friends?".… the fantastic effort that the ALD Life team put in is phenomenal, we really couldn't imagine not having that catch up time in our lives." mum with son who has ALD
"It never ceases to amaze me that "we – the ALD Life family” manage to have such fun amidst such dire situations" bereaved mum
"It is a special meeting with special people." ALD doctor
ALD Life is a national charity which supports anyone living with ALD. The organisation was founded by a mother whose sons had both been diagnosed with ALD and who recognised the severe lack of information and support available to families in her position. In a relatively short amount of time, and with very limited resources, the charity has helped almost 1,500 people affected by ALD.
ALD Life currently receives no government funding and the charity’s running costs are funded through the profits from their five Charity Shops, established to take the burden of fundraising away from ALD sufferers. This means that 100% of every grant or donation is spent on support and research.

ALD Life

Location: London

As the founder of ALD Life I am so, so proud of the ALD community we have helped to create. Not only has it connected those affected by this devastating disorder, it's created a phenomenal and cathartic support network filled with passionate and dedicated individuals improving ALD lives daily.
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