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In a hair-raising campaign, Amy is braving the shave for the Marfan Trust. Hairdresser Amy connected the dots that led to her husband’s & daughter’s #LoeysDietz diagnosis & she is now losing her long locks to raise awareness & funds for improved treatment. bit.ly/4iLrAg8

Every condition has defining characteristics and a common feature of Loeys-Dietz syndrome is tortuous, spiralling arteries. It is twenty years since this connective tissue disorder was identified and here is our guide to the syndrome. bit.ly/3U46q3l #LoeysDietz

Parents' Corner continues this Tuesday, 18 March at 7pm on Zoom. It is a chance to meet similarly situated parents of children with #Marfan or #LoeysDietz syndrome, and discuss common concerns in a friendly, warm environment. Join the conversation! bit.ly/3DzDE5r

Hugely hyped, the #collagen market is a burgeoning business with its promise of strengthening ageing skin & improving painful joints. But do these supplements work? And does increased collagen production compensate for diminished #fibrillin in #Marfan? bit.ly/4kXfLp1

A family affair, #Marfan has long been a part of Donna’s life. She, her mother, & her two young children have the condition, as did her late sister. To improve the future for Marfan patients, Donna will be taking part in Glasgow's Kiltwalk Mighty Stride! bit.ly/3Y1rWY3

Unhappy with the existing surgical solutions to his expanding aorta, Tal Golesworthy conceived an elegant, less intrusive alternative. His revolutionary invention was realised 4 years later, in 2004. Listen to this fascinating interview. bit.ly/4iPeXRX #Marfan #AortaEd

Continuing the Benefits Cuts announcement of last week, the gov has unveiled its nervously anticipated #SpringStatement, reaffirming its commitment to 'fiscal discipline'. We have interpreted the potential ramifications of this for our #Marfan patients. bit.ly/4hSxfQG

Micah’s spirit will surge through the streets of Paris to the Palace of Versailles as his mother and three friends run the Marathon in his memory on 13 April. Read their story and campaign: tinyurl.com/erzrhb2d #Marfan #MarfanSyndrome #AorticDissection #ParisMarathon #AortaEd

Healthy teeth make a happy smile, but #Marfan & #LoeysDietz syndromes can bring oral complications, including a high-arched palate, while dental surgery may carry a risk of #endocarditis. Here is our new, comprehensive guide to Dental Care with MFS & LDS. tinyurl.com/yc79yk88

Minimally invasive and therefore conducive to a fast recovery, the #endovascular approach to surgery describes the keyhole techniques performed to repair an #AorticAneurysm. Endovascular simply means ‘inside the blood vessel’. Read on: tinyurl.com/ynm96rsr

Tom is running for a better future as the sun shines on the #BrightonMarathon today. His partner Tabitha survived an #AorticDissection only to find out she has #MarfanSyndrome. Tom is raising funds & awareness for the condition. Diagnosis is key: tinyurl.com/yzyk62y5

The exhilaration of crossing the finishing line! Natasha & her friends were amongst the sea of 56,950 runners weaving through the streets of Paris yesterday in the largest marathon the world has ever seen! Natasha ran for her beloved son Micah. Thank you, Natasha! #ParisMarathon

Surgery hovered on the distant horizon during Darcy’s adolescence, an abstract idea until it became a conversation, & then suddenly, a reality. She was in Year 9 & scared. Years later, Darcy reflects on her experience of PEARS surgery: bit.ly/4cQZheI #Marfan #AortaEd

Parents' Corner resumes this Tuesday, 22 April at 7pm on Zoom. It is a chance to meet similarly situated parents of children with #Marfan or #LoeysDietz syndrome, & discuss common concerns in a friendly, warm environment. Join the conversation! bit.ly/3RtuZon #Parents

Hidden away but keenly felt, the ENT aspects of Marfan and Loeys-Dietz syndromes are quite varied and we have addressed them here in our new, helpful Guide! bit.ly/4iTGGzS #MarfanSyndrome #Marfans #LoeysDietz

#HappyNursesDay! Healers are the world’s true heroes & today we celebrate those at the heart of healthcare, nurses! Jo joined our Trust as a CNS in 2022 & has added an invaluable dimension to our charity. Jo sees patients online: bit.ly/3pFucGq #InternationalNursesDay

Anecdotal evidence from our helpline signals the need to reemphasise the implications of #InfectiveEndocarditis to dental surgeries. Here's a link to a helpful piece on the subject. Are you a high-risk patient? If so, order your alert card today! bit.ly/3S2dXxT #Marfan

Aspiring research scientist Gemma has just emerged from a week-long spell in our lab, very enthused. “This experience has been an incredible insight into #Marfan & the brilliant research that José & his team carry out, all of which benefits my family”: bit.ly/3GSoZDu

Parents' Corner resumes tomorrow, Tuesday 20 May, on Zoom. It is a chance to meet similarly situated parents of children with #Marfan or #LoeysDietz syndrome, and discuss common concerns in a friendly, warm environment. Join the conversation! bit.ly/43muGBo

Navigating the education system with #Marfan can be a challenge but a surmountable one. Occupational therapist & schools expert Natasha Woodgate is hosting an hour-long webinar on 5 June, dispensing invaluable advice and taking questions. Sign up today! bit.ly/438mntW