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.

About BST logo

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.

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