MSD Action Foundation/ Mykidstime Charity 2016

MSD Action Foundation/ has been chosen as one of the Mykidstime Charities for 2016. MSD leads to years of pain, severe disability and ultimately death; most children do not live to see their 10th birthday, some die much younger. Dylan Finglas suffers from MSD.

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What is MSD Action Foundation?

MSD Action Foundation are a non-profit organization and have no paid employees – all work is carried out by volunteers. MSD Action Foundation and are all part of the one body and were established in March 2015.

Dylan’s parents Alan & Michelle Finglas were pivotal in establishing the MSD Action Foundation. This was as a result of the news that their son Dylan was suffering from a clinically devastating condition called Multiple Sulfatase Deficiency – MSD.

What is MSD?

Multiple Sulfatase Deficiency (MSD) is a genetic disease in children that is rapidly degenerative and fatal. Children with this disease are missing essential enzyme activity for normal cellular functions. Over time, a toxic material called heparan sulfate builds up in the brain and body and cells become toxic. This results in devastating effects on the whole body and central nervous system.

MSD Foundation Saving Dylan

MSD Action Foundation / Saving Dylan Goals

Our Urgent Mission is

1. To promote and support research advancements that will lead to improvements in:

  • clinical outcomes
  • life expectancy
  • quality of life

for patients suffering from Multiple Sulfatase Deficiency.

2. To further the breakthroughs in gene therapy which has stopped the progression of this disease in lab tests. This is a first step in potentially curing this disease.

3. To accelerate research to ensure that humans can benefit as soon as possible.

The exact treatment required has worked on humans with a very similar condition on a trial in Paris, this is hugely positive but the cost is the biggest obstacle to make a trial happen for a least 3 children suffering from MSD.

How Can You Help MSD Action Foundation?

Saving Dylan

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