Events

DHDDS Fundraising Initiatives & Activites

Mel Dixon on Road to Genome Podcast

Cure DHDDS founder Mel Dixon joins Helen Bethell on the Road to Genome podcast to explore both the heartbreak and hope that can come with a genetic diagnosis - and to share the story behind Cure DHDDS.

Listen here: S5 E2 - DHDDS: Turning a Diagnosis into a Global Support Network - The Road to Genome

A huge thank you to everyone who took part in this year’s Cure DHDDS Warrior Walk!

We were thrilled to welcome an incredible 130 participants on 8th June—and together, we’ve raised over £68,000 to support vital research.

Court of dreams with the Portland Trailblazers

On Feb 20th please join us to make some noise for Frances Changed My Life & Cure DHDDS.

There will be some early afternoon hoop shooting on the ACTUAL court, exclusive Frances tee for the event and seat to the Blazers vs Lakers game. Auction items & a raffle also going live. Not forgetting that JUMBOTRON action!

Portugal. 'The Man' has created a special Syrah in collaboration with AVP Wines & Packs of Mexican style lager with Stormbreaker Brewing

To raise awareness and funds for continued goals of Cure DHDDS. The event will kick off 6-9pm from 832 N Beech street Portland Oregon. 100% of the proceeds from these two projects will go to our foundation.

Come out and raise a glass to changing the lives of those affected by Rare Disease.

In it together – Tandem Bike Ride John O’Groats to Lands’ End - Raises almost £80,000!

Charlie Dixon (Dad to two children with DHDDS) teamed up with friends and family to ride 960 miles from John O’Groats to Lands’ End on a tandem bike from August 30th to September 8th.

He chose to ride a tandem to reflect the teamwork that is going to be required to research and ultimately find a cure for DHDDS.

Charlie was captain (front rider) of the tandem the whole journey, but was accompanied by several different stokers (second rider).

Charlie and the tandem team raised just under £80,000 for this incredible challenge!

Party at Home Guards - 6th July 2024, 7pm - 12am

This event included welcome drinks, DJ, Hog Roast, Games and Prizes and an Auction and raised a whopping £9000 for Cure DHDDS research !

Inaugural CURE DHDDS Golf Day - 14th October 2024

We hosted the inaugural Cure DHDDS golf day at Windlesham Golf Club in October.

The weather was more conducive to snorkelling but pleasingly we were able to play and had a wonderful atmosphere out on the course despite the conditions.

We raised an amazing £5000 from the day, with over 70 golfers and some very kind sponsorship from T Rowe Price and auction donations from Richard Spencer, Roger Smith and Denham Golf Club.