Having completed the Marmotte bike ride in July and raised over £300 for Barth Syndrome Trust (BST), he is now working with his National Citizenship Service group (FLADS C254) to once again raise money for BST.
This time, they:
- will swim the equivalent of the channel on Monday 15th August at Hamble Pool,
- host a laser-quest event at Frankies Fun House in Romsey on Wednesday 17th August
- have organised a picnic on Friday 19th August at Romsey Rugby club.
Details can be found on their facebook page
Come along to their events and/or support via their JustGiving page.
You can help Flads C254 raise money for this great cause by donating directly to their fundraising page – https://www.justgiving.com/Flads-C254?utm_source=Sharethis&utm_medium=fundraisingpage&utm_content=Flads-C254&utm_campaign=pfp-email.
JustGiving sends your donation straight to Barth Syndrome Trust (BST) and automatically reclaims Gift Aid if you are a UK taxpayer, so your donation is worth even more.
The reason why BST is so close to our hearts as a family is because it affects one of Scott’s oldest and closest friends.
Barth syndrome is a rare, often life-threatening genetic disorder that affects boys. Look at our logo and you’ll see a heart at its centre: this is because most of our boys have heart failure and a risk of sudden cardiac arrest. However, the heart at the centre is also a powerful symbol of who we are as an organisation: we are a strong, caring and positive force.
The swirl around the heart encompasses the many symptoms which are caused by Barth syndrome – immune system problems, muscle weakness, extreme and debilitating fatigue, growth delay and feeding problems. But again, our swirl means more to us than just a collection of symptoms – for us it symbolizes unity, collaboration and inclusion. So yes, Barth syndrome is a serious condition that strikes in many different ways but with your help, we know we will succeed in our mission.