A TRIO of Lancaster University workers stepped it up a gear to raise money for a colleague whose child has a rare genetic condition.
Director of Research and Innovation, Dion Williams, Innovation Community Manager, Stuart Powers, and Research Development Officer, Andrew Wilkinson trekked from Lancaster University, around the Fylde Coast and back again in a 100-mile cycling challenge to raise funds for a vital research project.
It came after Research Commercialisation Officer, Rachel Ashford and her husband Andy found out their baby daughter, Ada, had been born with DeSanto-Shinawi Syndrome (DESSH), an ultra-rare genetic condition with only 20/30 known cases in the UK and fewer than 200 worldwide.
While there is no treatment for DESSH, researchers recently identified a safe, existing drug which may help alleviate some of the symptoms - and the charity Rare People is raising funds for a UK-based trial.
Dion said: "When Rachel shared Ada's story with the team, colleagues in Research and Enterprise Services were keen to get involved and raise funds which could support a new trial. They have already joined forces for a raffle, a Christmas jumper collection and a bake sale on campus.
"A few of us decided it would be a good idea to cycle 100 miles in a day to do our bit. Stu planned a brilliant route and we were lucky with the weather so it ended up being a good - if pretty exhausting - day.
"It was great to see the donations coming in, and really helped us get through, but we would love to see even more money raised towards this cause as people learn more about Ada's story and want to help."
The cycle challenge has already added more than £700 to the Ashford's fundraising total. Overall, the family have raised an impressive £25,000 for the cause.
Rachel said: "Sharing Ada's diagnosis was one of the hardest things we've ever done but the response from colleagues has been brilliant. Knowing that people are willing to take on challenges like a 100-mile cycle to support Ada and other children with DESSH is incredibly moving.
"We're so grateful for every bit of support. Thank you to Dion, Stu and Andrew for taking on this ride for research."
DESSH is caused by a fault in one copy of the WAC gene, reducing the amount of WAC protein needed for healthy brain development. For Ada, this means global developmental delay, low muscle tone, epilepsy and possible vision and hearing challenges.
To learn more about Ada's story and donate go to the Just Giving page here.
