Alex, The Leukodystrophy Charity

ALD Life Community Get Together

To bring together families and individuals living with rare, inherited and incurable metabolic disorders caused by a faulty ABCD1 gene called adrenoleukodystrophy (ALD) & adrenomyeloneuropathy (AMN). The event will support those affected and inform them of developments in treatment and research.

history Campaign has now closed

It ran from 12:00 PM, 4 December 2015 to 5:00 PM, 14 December 2015

Registered Charity in England and Wales (1106008)

open_in_new https://www.alextlc.org/
Check mark Match funded

Campaign target

£10,000

Amount raised

£7,440

Donations

21

    Categories

  • Health/WellbeingHealth/Wellbeing
  • Medical ResearchMedical Research

    Helping

Location

Situation

ALD & AMN are rare disorders (approx. 1:20,000) so families are isolated and geographically dispersed. There are also few specialists treating or researching this condition. Medical information and emotional support is needed after diagnosis and throughout the ALD/AMN journey as both the immediate and wider family can be affected. Crucially many people rarely get any respite from the rigours of living with disabilities caused by ALD/AMN due to unsuitable locations and prohibitive holiday costs.

Solution

Provide respite from the hardship of living with a horrendous disorder. Reduce isolation by providing opportunities for families to network, make lasting friendships, support each other and receive advice. Workshops/activities will cover coping strategies, alleviating symptoms and managing care. Information about ALD/AMN will be shared including current treatment options and research opportunities. Discussions about developments in ALD/AMN will be held with researchers and medical professionals.

  • We had such a great time and didnt want to come home, the people we met really feel like such good friends that we could just talk to all night.

    — Anna Robson

  • I know how important this event is to me and my family, I realise research is vital, but the info we get from these meetings is also invaluable.

    — Sue Riggs

  • A fantastic weekend - well organised and very beneficial to families

    — Karen Harrison

  • We had such a great time and didnt want to come home, the people we met really feel like such good friends that we could just talk to all night.

    — Anna Robson

  • I know how important this event is to me and my family, I realise research is vital, but the info we get from these meetings is also invaluable.

    — Sue Riggs

  • A fantastic weekend - well organised and very beneficial to families

    — Karen Harrison