MSD Action Foundation is registered in Ireland, our charitable tax exemption no. is CHY 21493. We are a non-profit organization and has no paid employees – all work is carried out by unpaid volunteers. MSD Action Foundation and SavingDylan.com are all part of the one body. MSD Action Foundation and SavingDylan.com were established in 2015. Dylan’s parents Alan & Michelle Finglas with the help of some wonderful volunteers including the Board members were pivotal in establishing the Foundation. The Foundation is governed by a legally binding constitution which is available upon request.
Registered Charity Number 20100957
Our Urgent Mission
To promote and support research advancements that will lead to improvements in clinical outcomes, life expectancy and quality of life for patients suffering from Multiple Sulfatase Deficiency.
- To further the breakthroughs in various research areas including gene therapy which has stopped the progression of this disease in lab tests. These are the first steps in potentially curing this condition. We are working to accelerate research to ensure that humans can benefit as soon as possible.
- To create more public awareness of Multiple Sulfatase Deficiency.
- To act as a voluntary support network for the exchange of information in an effort to be a central database to try to keep up-to-date patient numbers for those affected by Multiple Sulfatase Deficiency and their families.
Who are we?
- Members of the Board
- Linda Brien (Chairperson) ACCA Accountant
- Linda Darbey (Secretary) Business Manager
- Andrew Patterson M.Sc (Treasurer) works in QC – Pharmaceutical Industry
The Foundation has three board members. There are no paid employees and none of the funding raised will be spent on personal medical expenses for Dylan or any other individual. All the funds will go to the research and development of a treatment/cure for MSD so that all patients that are suffering can have the best possible chance at life and the possibility of a better quality of life. We have many wonderful volunteers who support the Foundation which includes SavingDylan.com
- Alan Finglas
- Michelle Finglas
- Committee Members