The Great Walk 2023

We're walking 100km in 24 hours to raise research funds for children with HNRNPH2 Neurodevelopmental Disorder. Please donate what you can to help children like Autumn and all the children supported by the Yellow Brick Road Project.

Watch and share Autumn's story on YouTube

To find out more about the walk visit GreatHNRNPH2Walk.com.

Autumn often gets frustrated. She can’t communicate what she wants. She doesn’t understand the world. She can’t do things other kids can do. Why can’t people help her? We started to be concerned about Autumn’s development when she showed no interest or ability in walking. Then she wasn’t talking. She wouldn’t play with her toys. When her peers were learning to count she was learning to stand. After nearly 2 years of consultations, scans, and pokes and prods we were finally granted genetic testing. We discovered Autumn has an ultra-rare variant of the HNRNPH2 gene.

What the hell is HNRNPH2?

The HNRNPH2 gene drives the neurodevelopment of a wide range of our abilities. Its 'partner' gene, HNRHPH1, switches off once we’re born. Just under 150 children around the world have been found to have a ’misspelling’ in the H2 gene. These variants cause the gene to not be as effective in coding cells as we develop. Unfortunately, this tiny misspelling causes a huge impact on every aspect of our children's lives; physically, cognitively, and socially.

Many H2 kids are wheelchair-bound, non-verbal, and have digestion issues. They have challenges learning, and often have social anxiety, seizures, and a whole number of other issues we are still discovering. They need 1:1 support, professional care, and all the love and attention they can get.

There is hope.

Funding the cure

Animal studies have discovered that by turning off the faulty H2 gene, the H1 gene can ‘turn back on’ and compensate by encoding cells correctly. The Yellow Brick Road Project is a charity set up by HNRNPH2 parents that is funding research to better understand how H2 impacts children and how a cure could be developed for future human trials. Autumn and her H2 friends could have their lives changed in our lifetimes. We must help them.

The Great Walk - 100km in 24 hours

Our children find every day hard. Something as simple as walking isn‘t easy. We're walking the Grand Union Canal from Milton Keynes to Camden, in under 24 hours. There are a core group of walkers in for the 24 hour challenge with others joining alongside the canal or in their area.

Find out more about the walk at GreatHNRNPH2walk.com

Please donate what you can to support our HNRNPH2 children, the Yellow Brick Road Project, and the Great Walk team.

Where will my donation go?

The Yellow Brick Road Project will receive 100% of the donations. All other costs associated with the walk will be covered by the Shaw family or the walkers themselves.

The YBRP goal is to raise £ 230,000 - £ 400,000 to fund research projects to identify outcome measures and the development of a drug and cell line testing, the next phases toward reaching clinical trials.

YBRP maintains minimal overhead and operating expenses and all board members and officers are volunteers, no board member or officer receives any compensation for their services. Approximately 70% of funds raised are dedicated to funding research, 20% to patient engagement/outreach & raising awareness, and 5% to operating expenses.