MLD Support Association UK Events Fundraising


MLD Together for Leo – Raising funds for MLD Support Association UK

Date: Saturday 24 June 2017
Venue: Kilbroney Park, Rostrevor, Co. Down. Northern Ireland
Time: Walk from 1pm–5.30pm with balloon release at the end

Together for Leo Charity Walk MLD Support Association UK

MLD Support Association UK – Family Conference

Venue: Wyboston Lakes Conference Centre in St. Neots
Date: Saturday 9 June 2018
Time: 10.00–17.00

The second MLD Support Association UK Family Conference will be held at Wyboston Lakes in St. Neots on Saturday 3 June 2017.

The focus this year will be on Support and Care of MLD sufferers and their families, and will enable families directly affected by MLD to meet and share valuable information. There will be presentations on support and care, as well as an update on current and future research, followed by family discussions, and networking sessions. A crèche for children and affected adults will again be provided. Dinner on Saturday evening will be followed by free time for families to mix.

We are delighted that Dr. Anupam Chakrapani, Consultant in Paediatric Metabolic Medicine at Great Ormond Street Hospital will again join us as well as Dr Ming Lim, Consultant Paediatric Neurologist at the Evelina Children’s Hospital. Also attending will be Carol Hall of L’Arche Kent, a Community with a wide experience of supporting young people with Learning Difficulties. Other experts in the field of MLD/Leukodystrophies will also give presentations.

For further information please contact or call 07977 440809.





Planning Events
The MLD cycling team

The MLD cycling team

The administration team of MLD Support Association UK do not intend to organise any events themselves as we have few resources. However, we will support members or users who wish to organise fund raising events by the following means:

Promoting the event: Unless an event is widely publicised, it is unlikely to be very successful. We have produced the following materials which can be downloaded as an e-mail attachment on request, so that you can complete the details yourself, and print as appropriate:

The Association ‘Snowdrops’ Logo:
Template for a poster
Press release format

(There will be room on the template for you to add information about any local sponsorship you might have obtained.)

Legal stuff: There are lots of different things you need to be aware of when you collect on behalf of a charity, not the least of which is the responsibility you have to your donors to prove that what you are doing is legitimate. You should always provide a full account of what costs have been incurred, compared with the total fund collected, and aim to keep costs to less than 20% of the total as a maximum.

We have produced guidelines to ensure that you have covered all of the legal requirements, and these are available as an e-mail attachment too.

Next steps: Our office address is not fully manned, and is used specifically for receiving mail. If you are planning an event, and would like to receive any of the above, then please either send in the ‘Contact’ form, or a brief outline of the event planned, to the e-mail address given.

Click Here for Contact Form

About us

MLD Support Association UK was set up to bring hope to families in the fight to eradicate Metachromatic Leukodystrophy (MLD). Our aim is to provide support by way of shared information from people in similar circumstances who have already experienced the effects of the condition and/or any treatments available.

MLD Support Association UK

MLD Support Association UK is a
Registered Charity Number 1150542

Professor Timothy M Cox, MD, FRCP, FMedSci
Suzi Digby (Lady Eatwell) OBE
Iain Stewart MP


MLD Support Association UK
Floor 5
Amphenol Business Complex
Thanet Way

Tel: 07977 440809