About Little Lemurs...

'Little Lemurs' is a new charity being set up to help families and children suffering from one of the Peroxisome Biogenesis Disorders (PBDs)

In March 2006, at the age of 20 months, our son Harry was diagnosed with Infantile Refsums Disease (IRD), one of three genetic disorders also known as the Zellweger Spectrum. The other two are Zellweger Syndrome (ZS) and Neonatal Adrenoleukodystrophy (NALD).

At the time we were unaware of these conditions and have since tried to find out as much as we could about this devastating disease that has no cure.

In April of this year I decided that I needed to do something to help and came up with the idea of a charity bike ride. This money raising idea turned into more and, as a result of our experiences I resolved to start a charity that could help support families in similar situations, raise awareness of these conditions and fund research into PBDs.

So, with the support of my family and amazing friends, Little Lemurs (for Children with Metabolic Diseases) was born!

The chief aims of the charity are:

· To provide funding for medical research into the Zellweger spectrum of diseases and PBDs in general

· To provide information, support and grants to help with medical treatment and appropriate care

· To give general, non-medical, advice, information and support for affected families

· To build a network service for affected families with a view to promoting benefit through mutual help and support

· To help raise awareness of the Zellweger spectrum and PBDs

I am still planning my bike ride and will be cycling from Calais to Barcelona in Spring next year. For more information on why, what how etc please follow this link >>>

How did the name come about?

On a family trip to London Zoo, Harry became very attached to a toy Lemur in the gift shop. This Lemur became his constant companion and also one of his first words! Having a child with special needs is a life changing experience and we wanted to use the word Lemur to show the special requirements of living in such a family, so L.E.M.U.R.S. is about...

Love, Enthusiasm, Magic, Understanding, Realism and Support