News

Category: Supporter Stories

Ellie's Story

20 Jul 2025

Amiyah Discusses Marfan Syndrome

28 Jun 2025

Ed's Story

Pushing the limits for Marfan syndrome awareness
16 Jun 2025

In Memory of Jonathan

9 Jun 2025

Natasha's Story

21 May 2025

Gemma's Week in the Sonalee Laboratory

14 May 2025

Annie's London Marathon

Running for the Marfan Trust
21 Apr 2025

Darcy's Story: My PEARS Journey

A first-hand patient experience
16 Apr 2025

Running in Memory of Micah

31 Mar 2025

Newly Published Artwork by Marfan Trust Supporters

By Joy and Lucy
20 Mar 2025

Rachel's Story

Expect the Unexpected, by Rachel Linford
19 Mar 2025

Donna's Kiltwalk for the Marfan Trust

18 Mar 2025

Angus' Story

10 Mar 2025

Lindsey's Story

A life less ordinary
27 Feb 2025

Reece's Story

26 Feb 2025

Natasha's Story

25 Feb 2025

Michael's Story

24 Feb 2025

Jonathan

22 Feb 2025

Darcy's Story

The Beauty of Difference
20 Feb 2025

Tabitha and Tom: Fundraising for the Trust

18 Feb 2025

Wayne and Amy's Story

13 Feb 2025

Long Fingers Alerted Doctors to My Marfan Syndrome

11 Feb 2025

The Doctor Who Joined the Dots

Lucy's Story
10 Feb 2025

An Optometrist Saved My Life

Marfan Awareness Month February 2025
3 Feb 2025

Philippa's Story

Marfan Awareness Month February 2025
3 Feb 2025

A Fundraising Burns Supper

Thank you Kathryn, Pip & Jake
29 Jan 2025

Derek and Hypermobility

Swan Neck Finger Deformity
28 Jan 2025

Sarah's Journey

20 Jan 2025

Connor's Story

Navigating heart surgery
6 Jan 2025

A Story of Two Brothers

Appearances can be deceptive
28 Dec 2024

Thriving with Marfan Syndrome

Embracing Life Beyond the Diagnosis
24 Dec 2024

Lucy's Blog: Expect the Unexpected

29 Nov 2024

Darren's Story

25 Nov 2024

Francesca's Story

Marfan and Milestones
15 Nov 2024

Second Sight

Daniel's Story
14 Oct 2024

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

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

Sarah's Story

Marfan (and Loeys-Dietz!) Awareness Month
8 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

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

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
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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