A group of people smiling holding a banner withCUREUsher's logo at the peak.

April 10th, 2019

Jo’s Scafell Pike Fundraiser-Update

‘Jo’s Scafell Pike Fundraiser’ took place on Saturday 6th of April in the beautiful surroundings of the Lake District with 30 participants taking part in the climb with even more supporters at the base to cheer them on!! Regrettably, despite the weather on the day being glorious with stunning blue skies, the group weren’t able to climb Scafell Pike itself due to snow and ice making conditions too dangerous for the group. The group did however take on another challenging peak nearby, known as ‘High Seat’, which involved a mighty trek lasting nearly 8 hours!

Among the many who participated were Ivonne Bressers and Annouk van Nunen, as well as Ariella Ellenkamp from the board of Stichting Ushersyndroom (The Netherlands), and also taking part was Chloe Joyner from Usher Kids UK. Their presence highlighted our continued valued support for each other as part of a supportive and strong Usher community. We are so grateful for their support, and wish to thank them for taking part. Also taking part in the climb was Andy Coley. who completed the trek with the extra challenge of wearing special RP simulation glasses and ear muffs, to better understand the challenges Usher syndrome presents. A huge well done to you Andy.

All of the group did exceptionally well on the day, and should be very proud of themselves! After enjoying a well-deserved refreshing drink and dinner back at the base, a raffle was held raising even more money for the event, and we would like to thank Colin Hetherington for organising this. We would also like to say a big THANK YOU to everyone who participated in this weekend, you all are absolutely amazing and your support is invaluable to CUREUsher.

Finally, we would like to express our sincere gratitude to Gareth Williams and all those at Large Outdoors, including our guides for an extremely well organised hike and a fantastic weekend.

We are aiming to have all of the funds collected soon, and the total amount raised will be announced during a cheque presentation in the Netherlands with Stichting Ushersyndroom presenting a cheque to the lab of Dr Erwin van Wijk at Radboud University Medical Centre (Radboudumc). Dr Erwin van Wijk, whose research is being used in the first and only trial for those with Usher syndrome type 2a, aims to widen his valued research targeting other types of Usher syndrome using an exon-skipping method. For more information on the USH2A trial in which Erwin and colleagues collaborate with ProQR Therapeutics, please click here https://www.proqr.com/qr-421a-stellar-phase-1-2-study-for-usher-syndrome-2/ 

 

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