Pink Pages     MyLocalHero 2022     Advertise with us     


DADDY COOL: Berkhamsted father raises more than £27,000 for daughter with ultra-rare condition

 Published on: 20th September 2023   |   By: Annabel Stock   |   Category: Uncategorized

A father who walked 100km in 24 hours has raised more than £27,000 for research into his daughter’s rare genetic condition.

At 10am on Saturday, September 9, Ben Shaw and six of his friends began their almighty trek along the Grand Union Canal. They began in Bletchley, travelling through Berkhamsted, Hemel Hempstead, Kings Langley and Rickmansworth before reaching the finish line at Camden Lock the next day.

Ben’s three-year-old daughter Autumn suffers from a rare non-hereditary condition called HNRNPH2, which is caused by a random gene mutation.

Ben explained: “Humans have 20,000 genes. Imagine a library containing 20,000 books – for children with this condition, it is the equivalent of having a single misspelt word in one of those books, but that misspelling has very significant consequences.”

HNRNPH2 causes a variety of symptoms which affect walking, talking and learning. There are just 150 people in the world with the condition, and only 16 people in the UK. Autumn was diagnosed in January of this year.

While Ben and his six friends walked the whole 100km, many others joined along the way.

Celebrating the success, Ben said: “We did it – on the hottest day of the year. Through heat, exhaustion, and burst blisters. A total of 100km in 24 hours. It was harder than we all thought it would be, physically and mentally. We had some great highs and laughs and some painful and silent lows. There are parts of the Grand Union Canal I never want to see again.

“We have been absolutely overwhelmed by the support, love and attention this campaign has received. With TV, radio and press coverage alongside the incredible sharing on Facebook, we’ve managed to raise significant awareness of an ultra-rare condition and made a big dent in the research funds needed for the cure.”

The money raised will go to The Yellow Brick Road Project, a charity funding research to identify, understand, treat and ultimately work towards a cure for those impacted by HNRNPH2 mutations.

The charity is not government backed so they rely entirely on the efforts of fundraisers.

To donate, visit

Sign up to get weekly local news updates & offers:

  • This field is for validation purposes and should be left unchanged.


Leave a comment



This site uses Akismet to reduce spam. Learn how your comment data is processed.