#Marfan Mondays
A poignant run & a symbolic cap. Many congratulations to Karen who completed the Binfield 10K on Sunday, in memory of her husband & in support of the #Marfan Trust. Karen wore her husband’s beloved Bolton Wanderers hat, raising over £1,000 for our charity. #Aorta

Friday Fact: PEARS 20th Anniversary
A source of celebration, anniversaries mark significant events, none more so than the first PEARS procedure performed 20 years ago today. We toast the 1024 lives that are much better than they might otherwise have been.
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Constraints inspire creativity. Marfan patients are often reminded of their physical vulnerabilities and warned against certain sports. But what of those activities that can exploit #Marfan attributes? After all, height and length confer excellent reach ...bit.ly/3yCurGl

Emerging from the shadows to take centre stage in Bournemouth, rare diseases #Marfan & #WilliamsSyndrome stole the spotlight in a wonderful fundraising evening of copious toasts, talks & prizes. Thank you, Derek Goodger & the Priory Lodge of Acton 1996, for raising over £1,000!

Tangibly felt & yet intangible to people around you, pain is a common & unwelcome feature of #Marfan . The source is largely skeletal, with the loose joints, lax feet & large frame so characteristic of the condition all conspiring to cause great discomfort. bit.ly/3K7RVpw

Expressing the soul & spirit of an organisation is its cover face. We are revising & revamping our Introductory Guide to the #Marfan Trust Charity & seek a proud Marfan for the front cover. If you’d like to become the face - & figure - of our charity, email [email protected]

Parent Corner resumes this Tuesday, 14 May at 7pm. It's a chance to meet similarly situated parents and discuss common concerns in a friendly, warm environment. Join us!
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The scaffolding of our body, the spine gives us support and structure. Its intricate column comprising bones, joints, tendons, nerves & muscles is the central axis of our skeleton and keeps us upright. But in #Marfan , it can send us sideways, or forwards. bit.ly/4akNqm6

The exhilaration that comes with crossing the finishing line! Congratulations, Danny Lovell, on completing the Birmingham Half-Marathon and raising nearly £2,000 for the #Marfan Trust!

Often emerging during the sensitive teenage years, chest deformities vary in aesthetic & medical severity. They are not always a cosmetic concern but can stimes impair heart & lung function. They can also be a first clue to the existence of #Marfan . tinyurl.com/ycxmjvzv

From dedicated smoker to committed runner, Danny Lovell is taking on the Birmingham Half-Marathon this Sunday! His step-son, Sam, has #Marfan & Danny is raising funds & awareness for a happy & healthy Marfan future. Read his story: tinyurl.com/5xrmmyd2
#Thoracoflo

An uncommon syndrome, #Marfan produces unusual signs & symptoms. Fingers are often long & spidery, & the mouth highly arched, like a cathedral. When several teeth are lost it is hard to mould a denture to fit this specific shape, as a supporter has found: tinyurl.com/5edda8kf

Not just a cosmetic concern but often a medical one, #PectusExcavatum can be a sign of #Marfan . Navigating the emotional & medical journey of this sometimes life-impairing problem can be tricky. New charity Pectus Matters discusses this at our webinar: tinyurl.com/hf3vtwkw

Joanne's Drop-In resumes this Tuesday - tomorrow - at 7pm. Why not pop in for an informal conversation on #Marfan matters. It's an opportunity to meet your fellow supporters and share common concerns in a friendly environment. tinyurl.com/ywxbacxa

Endlessly evolving, medicine is increasingly personalised. Emblematic of this is PEARS, conceived by Tal Golesworthy. Unhappy w/ the existing surgical solution to his expanding aorta, Tal created an alternative & was the first recipient of his invention. tinyurl.com/yck2r5e9

Emerging from her interview with Jim Al-Khalili for BBC Radio 4’s #TheLifeScientific , to be broadcast in July. Dr Anne Child, Medical Director of the #Marfan Trust, discussed her uniquely fascinating life and career! We will remind you nearer the time!

#MarfanMondays Wayne's Story
A poignant anniversary and a rush of memories. It is 21 years ago that Wayne Johnston died of an #AorticDissection , leaving a family bereft. His legacy lives on in his wonderful son Lewis, and his cookbook, A Zest for Life. tinyurl.com/2fpapyz7

Kris O'Neill turned a long-held ambition into the most exciting reality. With his late brother Liam, he dreamt of a fundraising car rally that would help Marfan patients. Today Kris and his ‘bawzers celebrate 10 years of the Cannonbawz Run. We wish we could join you! Thank you!

Sleep repairs your mind and replenishes your energy. Constant interruptions to this precious process can be damaging and life-impairing. #Marfan syndrome is associated with a high prevalence of Obstructive Sleep Apnoea. What is it? tinyurl.com/58n9dkmp
#ObstructiveSleepApnoea

From the heart to the head!
After extensive research and 120 patient interviews, award-winning cardiovascular nurse Rosalie Magboo will present the results of her study on the #psychosocial aspects of living with #Marfan , before & after #HeartSurgery . tinyurl.com/bdffzzvx