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Category: Supporter Stories
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Lucy's Blog: Part 13
29 Sep 2024
Ziplining Across the River Clyde
For a better future
2 Sep 2024
Running for Russell
by Michael
19 Aug 2024
Lucy's Blog: Part 12
7 Aug 2024
Olly's Visit to the Sonalee Laboratory
Inspired by his Marfan syndrome to study biology ....
5 Aug 2024
Daniel's Story
Fundraising for the Marfan Trust
29 Jul 2024
Lucy's Blog - Part 11
A new diagnosis and a new physio
15 Jul 2024
Amelia's Story
A fundraising whirlwind
8 Jul 2024
Ashton's Story
He smiles through his chronic pain and loves to make people laugh
17 Jun 2024
Charlotte's Story
Running Matters!
10 Jun 2024
Danny's Story
From dedicated smoker to avid runner!
2 May 2024
Wayne's Story
21 years ago
22 Apr 2024
Karen's Story
A poignant run
15 Apr 2024
Brooke's Story
Running in memory of a dear uncle
8 Apr 2024
Lucy's Blog: Part 10
The theme of cancellations & lost referrals has marked Lucy's hospital experience
7 Apr 2024
Lucy's Blog - Part 10
Unexpected Finding
26 Mar 2024
James' Story
Fundraising in memory of a friend
25 Mar 2024
Sarah's Story
A momentous Marfan Monday!
18 Mar 2024
Amiyah's Story
11 Mar 2024
Myles' Story
A Leap of Faith for a Lost Friend
11 Mar 2024
Lucy's Blog - Part 9
Whether slow or fast, progress is progress
6 Mar 2024
Oliver's Story
Recently diagnosed and spreading the word!
4 Mar 2024
Appearances Can Be Deceptive
by Ellie Musgrave
29 Feb 2024
Micah's Story
Marfan Awareness Month
26 Feb 2024
Ellie's Story
Marfan Awareness Month
25 Feb 2024
Managing Mental Health with Marfan Syndrome
by Anna Gould
21 Feb 2024
Lynsey's Story
Marfan Awareness Month
19 Feb 2024
Managing Height in Marfan Syndrome
How Tall is Too Tall?
15 Feb 2024
Zaira's Story
Connecting the dots ...
12 Feb 2024
Rebecca's Story
Embracing a magnificent milestone
20 Nov 2023
Sara's Story
From the Rooftop of the World
30 Oct 2023
Carole Finkletaub
A warm-hearted woman who turned her private sorrow into a force for good
16 Oct 2023
Josie & Greg
How a daughter's diagnosis saved her father's life
11 Oct 2023
Laura's Story
25 Aug 2023
#MarfanMondays: Making MarFriends
14 Aug 2023
Life is a Cabaret
In memory, but also in hope of a better future
8 Aug 2023
Chancey and Isabella
A new (Mar)friendship
21 Jun 2023
Tom Reveler
A gentle giant
24 May 2023
Tom and Chloe
a beautiful story of love and loss
27 Apr 2023
A Story of Two Brothers
Appearances can be deceptive
29 Mar 2023
Major General Sir Sebastian Roberts OBE
A Tribute
20 Mar 2023
Cairo-Mia's Story
Illustrating Marfan Syndrome
28 Feb 2023
Loui's Story
Appearances Can Be Deceptive
26 Feb 2023
Jonathan's Story
"If only I'd known"
22 Feb 2023
Marfan and Medicine
Can trainee registrars correctly identify MFS?
20 Feb 2023
Julie's Story
When did you first hear of Marfan syndrome?
2 Feb 2023
#MarfanMondays: Live Long and Prosper
by Camilla Allen
30 Jan 2023
Isabella Spreads the Word
Young and Determined!
5 Jan 2023
Gareth's Story
Surveillance is critical to survival ...
15 Dec 2022
Lucy's Blog: Part 5
by Lucy-Alexandra Atkinson
15 Nov 2022
Lula's New Focus
After complex eye surgery and a horrible scare, Lula has a new clarity of vision!
10 Nov 2022
Jamie's Story
A happy healthy farmer with an undiagnosed condition
7 Nov 2022
Elsa's Story
in pursuit of fitness with Marfan syndrome
1 Nov 2022
Hayley's Story
Improving diagnosis of Marfan syndrome
10 Oct 2022
Tim's Story
Running for a Friend
3 Oct 2022
Lana's Story: a Tale of Three Sisters
Lana's Long Run
26 Sep 2022
Charles' Story
A newly diagnosed Marfan with a bright future
31 Aug 2022
A Muddy Marfan Challenge: Helen's Quest
Helen faces her fears!
26 Aug 2022
Liam's Story
Liam loved life and lived fully
22 Aug 2022
Lindsey's Story
a life less ordinary
16 Aug 2022
Lucy's Blog: Part 4
by Lucy-Alexandra Atkinson
18 Jul 2022
Amiyah's Story
A little Marf and her Mum
11 Jul 2022
Climbing for a Cause
Intrepid 13-year-old George faces his biggest fears for the Marfan Trust
27 Jun 2022
Stamp for Marfan!
Postage makes pounds for the Marfan Trust
20 Jun 2022
James Griffin
Never was there another who lived so fully
13 Jun 2022
Alan's Story
My Life with Marfan Syndrome
28 Mar 2022
Marfan and Me
by Sarah Nuttman
14 Mar 2022
Chris's Story
When an overheard conversation saves a life
13 May 2021
Martyn's Story: How Can I Help You?
Let's Start a Conversation about Marfan Syndrome!
22 Apr 2021
Stuart's Story - A Unique Journey
Walking in the shadow of our namesake!
1 Apr 2021
Marfan Awareness Month: Our Supporters in the Spotlight!
In this, the grand finale to Marfan Awareness Month we put you, our supporters, in the spotlight!
1 Mar 2021
Natasha's Story: Marfan Awareness Month
Never was the need for greater awareness made more tragically apparent
25 Feb 2021
Christopher’s Story: Marfan Awareness Month
This is the story of Christopher whose Marfan syndrome was captured at an early age, allowing him to claim his condition
16 Feb 2021
Awareness Saves Lives: Wayne & Lewis' Story
This is the story of Wayne and Lewis - of a life lost and a life shaped by Marfan syndrome
9 Feb 2021
Don't Look Back
Our campaign concludes on a note of hope with a story emblematic of the life-enhancing role played by research
11 Dec 2020
How Did The Sonalee Laboratory Come About
Although Sonalee’s Marfan syndrome was not recognised until later on in life, she felt its impact from an early age.
19 Nov 2020
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Marfan Trust, a CIO registered as a charity in England in Wales with charity number 1198847 at: c/o 24 Oakfield Lane, Keston, Kent, BR2 6BY. Contact us at
[email protected]
or by phone on + 44 (0)333 011 5256
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