Project information

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.

May 2016 - May 2016

Charity information: ALD Life

ALD Life logo
  • Need

    Need

    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.

  • Aims

    Aim 1

    To stage the ALD Life Community Weekend (May 2016) for patients, families, clinicians & researchers.

    Activities

    » Involve ALD members, patients, medical professionals and researchers in the planning of the activities for the ALD Life Community Weekend.
    » Create an outcomes focused online booking form and publicise the ALD Life Community Weekend to ALD members, medical professionals and researchers.
    » Ascertain support needs for attendees with ALD or AMN with mild to severe disabilities, their families and carers.
    » Weekend respite at the Grange Hotel (Tower Bridge) providing accommodation, meals & activities - a treat often inaccessible to those with ALD/AMN.

    At least 130 people (patients, parents & professionals) will book and then attend the weekend. Attendees will also give their input to ensure activities are tailored to their needs


    Aim 2

    Provide practical info, emotional support and advice for patients with ALD/AMN, families and carers.

    Activities

    » Run patient led discussions groups about social, emotional and practical issues for men/women with AMN and for parents/carers of children with ALD.
    » Medical and research professionals to run workshops to cover all aspects of AMN/ALD including managing care, new research and emerging treatments.
    » Provide exhibitor stands for families and patients from ALD Life, support organisations and disability equipment providers.
    » Gather feedback from service users about the current services provided by ALD Life as input for future strategy development.

    Attendees give positive feedback regarding information, support & advice received with suggestions for future strategies. Patients are willing participants in workshops & sessions.


    Aim 3

    Provide networking opportunities for patients, families, carers, medical professionals & researchers

    Activities

    » Medical and research professional round tables to discuss best practice in treatment, ALD/AMN management, new research, innovations and prevention.
    » Entertainment and activities designed to facilitate networking for all ages and abilities with care assistance for parents who need a break.
    » Opportunities for families to network with ALD/AMN specialists and researchers via presentations at workshops and informal sessions.

    Families have access to the best AMN/ALD medical professionals & researchers in their field, who in turn gain a better understanding of the needs of ALD/AMN patients and families


  • Impact

    Impact

    Patients, many with limited life expectancy, build positive memories with their families.

    Families report less isolation by maintaining networks & friendship groups and feel better equipped to deal with the rigours of ALD/AMN.

    Consultants, researchers & specialists develop new ideas for the treatment and research of ALD/AMN and have a better understanding the daily challenges of patients with ALD/AMN.

    Families and patients are engaged with ALD Life and give input to organisational strategies.

    Risk

    The main risks are that disabled attendees have the incorrect equipment, insufficient funds, travelling restrictions and poor hotel access. We have conducted a site visit to the hotel to check its facilities, we pre-booked 90% of the hotel’s rooms for disabled guests, hired hoists, and ensured low cost parking is nearby. All places are free of charge with many making donations. To ensure that places are filled we will have a robust booking system and the event will be publicised to our members.

    Reporting

    We will engage donors by giving live updates using social media. We will issue a post event outcomes report with feedback from attendees. Further information will be included in our monthly newsletter, annual review and website. All major donors will also be invited to a dinner on Saturday night.

  • Budget

    Budget - Project Cost: £45,000

    Loading graph....
      Amount Heading Description
      £31,300 Venue/admin Accommodation, room hire, catering at venue and staff admin
      £7,700 Treats & activities Spa treatments, children's and special needs entertainment, awards ceremony
      £6,000 Travel expenses Cost of travel for scientists, researchers, speakers, service users and volunteers
  • Background

    Location

    Many of our service users live outside of London in various parts of the UK. Several medical professionals and researchers will travel from around Europe. Many families living with ALD or AMN never have a family break so this weekend for them is their one and only holiday each year. Therefore we have selected the Grange Hotel in Tower Bridge as it is in a central location which means it is easy to get to, has good transport links and has many sightseeing attractions nearby suitable for all ages.

    Beneficiaries

    Children with ALD (those without symptoms plus symptomatic boys with mild to severe cognitive and physical disabilities).
    Unsymptomatic boys with the ABCD1 gene who have undergone a bone marrow transplant.
    Adult men and women with AMN.
    Women who are carriers of the ABCD1 gene which is passed on from mother to child.
    Siblings and relatives living with a diagnosis of ALD/AMN in their immediate family.
    Medical and research professionals who share ideas, discuss research and define best practice.

  • Why Us?

    Why Us?

    ALD Life is the only charity in the UK offering a support service to those affected by ALD and AMN. As ALD Life is run by trustees and staff with first-hand knowledge of these disorders, we have a unique insight into what is needed and wanted by patients and families. We have We also listen carefully to feedback from our members which helps to shape the format of future events and ensures the services that we provide are in line with current needs.

    Read more about the Charity running this project.

    People

    Sara Hunt - CEO & Founder Of ALD Life

    Personal xperience of ALD, bone marrow transplant, AMN & genetic counselling. Event management including selecting speakers and agreeing the agenda.

    Lydia Edwards - Fundraising & Communications Manager

    Management of fundraising from individual donors, corporates and trusts/foundations. Also allcommunications, social media and post event reporting.

    Mark Bostock- Chair Of Board Of Trustees

    Works with CEO to finalise aims, objectives and agenda of event.

    Kathy Hemestrech - Patient Liaison & Information Officer

    Personal experience of symptomatic ALD and AMN. Finalises workshop agendas and patient information, facilitates networking and activities.

ALD - a devastating condition

A fantastic weekend - well organised and very beneficial to families

Karen Harrison