On Saturday 4th March we will be hosting a 4.4km 'Super Rare' walk which aims to raise money for SDS UK.  This is part of our Super Rare Campaign aimed at raising money and awareness of rare bone marrow conditions. The event coincides with Rare disease day which is earlier in the week on Tuesday 28th Feb.  

The walk is around the lovely Rake Brook and Lower Roddlesworth reservoir near Blackburn. Its generally flat all the way around however has occasional muddy areas and several steps to negotiate so prams and wheelchairs may need to be carried short distances. 

A route map is available in the link below: 

https://www.komoot.com/tour/1016242465?ref=wtd

(Apologies: you need to copy this link into another page to work)

Dogs and children are both extremely welcome both around the walk and in the pub afterwards. After the walk there will be free hot drinks back at the Hare and Hounds pub where we have reserved a section next to a log fire to warm back up. There is of course a great selection of ales and food available should you wish to purchase these afterwards. 

We hope that you can join us on this day and would love it if you could donate any amount towards SDS UK. They are a small charity but helped to provide support to us when Harry was diagnosed with SDS several years ago. It is run solely by parents of SDS patients and we hope to continue the great work with the funding raised through this event. 

Please could I ask for anyone joining to fill out the form in the link below so we know how many people will be turning up! Thanks 

https://forms.gle/m5dhbgReDeqTYJeD9

(Again, unable to hyperlink page)

For more information on SDS please check out this short video: 

What is SDS? - YouThttps://www.youtube.com/watch?v=CKverjQcrCEube

SDS UK supports people affected by Shwachman-Diamond Syndrome (SDS). The charity connects and supports families, patients, and medical professionals. It promotes access to health and educational services and resources.