Aims to save more lives through rapid ID of symptoms and urgent CT scan diagnoses
The Marfan Foundation and Think Aorta are unique non-profit organizations that share a common goal: to save lives from acute aortic dissection, an often misdiagnosed, lethal, cardiovascular condition.
That’s why, beginning with Aortic Dissection Awareness Week 2024 and moving forward, the Foundation will amplify Think Aorta’s key message: prompt, accurate diagnosis of aortic dissection saves lives.
“Since 2018, the Think Aorta campaign has worked to raise life-saving awareness around the world. Think Aorta is a natural match with The Marfan Foundation’s long-standing mission to save lives and our extensive work to educate everyone about aortic dissection warning signs and our community’s exponentially increased risk. Together, we can mutually extend our impact and help ensure that people in our communities experiencing dissection are not sent home from emergency rooms with fatal results,” said Bert Medina, Chair of the Foundation’s Board of Directors and an aortic-event survivor.
The Marfan Foundation and Think Aorta want everyone to know the warning signs of aortic dissection, which can include sudden-onset severe pain, especially in the neck, back, chest, or abdomen; numbness or weakness in limbs; and history of collapse. Pain is often intense, migratory, and transient and may include sharp tearing or ripping sensations. During a dissection, people may experience a feeling that something is terribly wrong. Once dissection is rapidly confirmed via CT scan, emergency surgery can save lives.
“An aortic dissection is an extraordinarily scary, life-changing event,” said dissection survivor and Marfan Foundation board member Joaquin Ramos. “I am blessed that the medical team treating me when I dissected knew the signs and saved my life. At 38, I didn’t know I had Marfan syndrome and a much greater risk of a tear in my aorta with the power to end my life. Many people like me are unknowingly sent home from emergency rooms to die due to lack of awareness. I am proud that we are expanding our efforts to change that, alongside the powerful Think Aorta initiative.”
Think Aorta and The Marfan Foundation aim to educate laypeople and medical providers alike by sharing key resources such as emergency department posters, trigger cards, websites, podcasts, social media, videos, first-person survivor stories, and stories from loved ones who have lost someone to aortic dissection. Their shared goal is to prompt everyone to “Think Aorta” during Aortic Dissection Awareness Week 2024 and every day.
For the Marfan Foundation, which was established in 1981 and serves people living with Marfan syndrome, Loeys-Dietz syndrome, VEDS, and related conditions – all of which increase risk of aortic dissection by roughly 250x that of the general population – raising awareness about signs of both the rare conditions themselves and aortic dissection symptoms are vital goals. Many people learn for the first time that they have a genetic condition when they dissect, or their bereaved family members are made aware following loss of life.
“We are delighted to have The Marfan Foundation’s support for the global Think Aorta campaign,” said Think Aorta patient leader Gareth Owens, who has Marfan syndrome and chairs the national patient charity Aortic Dissection Awareness UK & Ireland. “This will increase the impact of the campaign and save more lives. The Board of The Marfan Foundation includes several aortic patients like me who understand how the Foundation’s partnerships around the world with clinicians, researchers and other patient advocacy organizations can help us save more lives together – that’s our only goal.”
In the months ahead, the Foundation will share Think Aorta with the 70+ institutions in its clinic directory, which include the leading connective tissue and aortic centers for these conditions in the United States. The Foundation is delighted to work with Aortic Hope in the U.S. to amplify life-saving messages around both aortic dissection and survivor wellbeing. The Think Aorta campaign was brought to the US in 2020 by patient-led non-profit organization Aortic Hope. Additionally, its life-saving message is endorsed by the American College of Emergency Physicians, the Society of Thoracic Surgeons, and the Society for Vascular Surgery.
“Aortic Hope has worked with Think Aorta to spearhead the #ThinkAortaThinkFamily initiative” says Aortic Hope President Carin Andersen. “We educate the community on the importance of knowing your family medical history, which is an often-overlooked piece of the puzzle in diagnosing aortic disease. Aortic disease is more common than you think. Greater awareness is vital. We welcome The Marfan Foundation’s support in this. Think Aorta: two simple words saving many lives.”
Launched in 2018, Think Aorta began as a partnership between national patient charity Aortic Dissection Awareness UK & Ireland, the Royal College of Emergency Medicine, the Society for Cardiothoracic Surgery in GB & Ireland, and Heart Research UK. The UK national cardiac surgery audit credits the campaign with increasing the number of patients having emergency aortic surgery by 82% over the last 10 years, saving more than 300 lives a year. Globally, the life-saving Think Aorta poster is now available in the native language of more than 50% of the world’s population. As emergency care faces huge challenges around the world, the campaign still has much work to do to ensure that a diagnosis of aortic dissection is not missed.
The Marfan Foundation’s Chief Global Business Development Officer Eileen Novins said, “We look forward to working with Think Aorta internationally and Aortic Hope in the United States to expand the reach of key aortic dissection awareness messaging through our networks and offer life-saving tools to medical professionals and our community members so they can better advocate for themselves and their loved ones. We appreciate the incredible work Aortic Hope is engaged in domestically and know that together we can amplify the key message to ‘Think Aorta’ and save lives.”
For more information:
April Dawn Shinske, Chief Marketing & Communications Officer
adshinske@marfan.org
856.912.4988
Related Links
Aortic Dissection Awareness Week Resource Site – Marfan Foundation
The Marfan Foundation – www.marfan.org; The Loeys-Dietz Syndrome Foundation – www.loeysdietz.org;
The VEDS Movement – www.thevedsmovement.org; The GenTAC Alliance – www.gentacalliance.org
THINK AORTA US – www.thinkaorta.us
THINK AORTA Global – www.thinkaorta.net
Aortic Hope – www.aortichope.org
Warning Signs of Aortic Dissection on TikTok: English | en Espanol
THINK AORTA poster: English (US) | English (UK) | en Espanol | Multilingual
Warning Signs Infographic | Video: Three Things I Wish All ED Pros Knew About Aortic Dissection, Dr. Kim Eagle
Video: Tony’s Story
About the Marfan Foundation
The Marfan Foundation is an international nonprofit organization established in 1981 that empowers people living with genetic aortic and vascular conditions to foster optimal quality of life and longevity. We save lives through research and education that enables healthcare providers to offer best-quality treatment. We serve communities impacted by Marfan syndrome, Loeys-Dietz syndrome, Vascular Ehlers-Danlos Syndrome, Stickler syndrome and related conditions, reaching 7M people in the digital space alone annually. To learn more, visit marfan.org or meet us on social media:
Website | Facebook | Instagram | LinkedIn | X (Twitter) | Threads | YouTube | TikTok
About Think Aorta
Think Aorta is the global, patient-led campaign focused on improving the recognition and diagnosis of aortic dissection. It was created and is led by national patient charity Aortic Dissection Awareness UK & Ireland in partnership with the Royal College of Emergency Medicine, the Society for Cardiothoracic Surgery in GB & Ireland and Heart Research UK. Think Aorta provides free, accredited learning resources for emergency medicine, radiology and cardiology teams and for first responders, improving their ability to spot a time-critical, life-threatening aortic dissection and take appropriate action. Think Aorta is saving lives around the world and is endorsed by the leading medical professional bodies in all of the countries where it is active, including the Society of Thoracic Surgeons, the Society for Vascular Surgery and the American College of Emergency Physicians in the US. The THINK AORTA US campaign is led by Aortic Hope. THINK AORTA® is a registered trademark.
Website | Facebook | Instagram | X (Twitter) | YouTube
About Aortic Hope
Aortic Hope is a US non-profit organization, led by patients, that serves a community of patients, survivors, and caregivers living with an aortic disease and provides programs for hope, awareness, and support. Aortic Hope leads the THINK AORTA campaign in the US and distributes the definitive patient handbook “Aortic Dissection: The Patient Guide,” endorsed and supported by the Society of Thoracic Surgeons and the Society for Vascular Surgery.
Website | Facebook | Instagram | LinkedIn | X (Twitter) | Threads | YouTube
April Dawn Shinske is the Chief Communications and Marketing Officer for The Marfan Foundation. She is proud to lead a stellar integrated marketing and communications team and honored to help tell the amazing stories of our community members.