TheMarfanFoundation

You’ve Got Questions. We’ve Got World-Class Experts. Don’t miss your chance to hear from leading specialists at the NYC Tri-State Symposium: Living Better with Marfan, Loeys-Dietz, VEDS & Stickler on Saturday, May 16. Space is limited—register today: marfan.org/calendar/nyc-t… Learn how to build the right healthcare team, explore adult and pediatric care, hear from experts in cardiac surgery and orthopedics, gain valuable patient perspectives, and more. Plus, you can connect with your local Marfan Foundation community during special social events. #Marfan #MarfanFoundation #MedicalSymposium #NYCEvents #LoeysDietz #VEDS #Stickler

Practicing mindfulness can be a great way to relieve stress and boost wellbeing. Check out this video to try out some techniques from expert Tom Bassarear. 📹youtube.com/watch?v=ZWdD2j…

We’re sharing a month of ways to focus on wellbeing. Try out the ones that feel like a good fit to you! 🗓️ Get the resource: marfan.org/resource-libra… Today's tip: Spend a few minutes each day doing deep breathing. #MentalHealthAwarenessMonth #Marfan #LoeysDietz #VEDS #SticklerSyndrome

Today marks the beginning of Mental Health Awareness Month. We want you to know we’re here for you with free resources and support every day of the year. We’ll be sharing information – both from the Foundation and from trusted sources like NAMI – throughout May. 🤗 Know you are never alone. Check out our dedicated mental health resources at marfan.org/mental-health

As we close out today - marking the 30th anniversary of Rent's Broadway debut - we are so grateful to everyone who has taken the #LarsonLove challenge so far. Did you know we've reached more than 175K people over the last few weeks with lifesaving awareness about Marfan syndrome and aortic dissection in memory of Jonathan?! Undiagnosed Marfan syndrome and a lack of medical awareness around the signs of aortic dissection that tragically cut his life short meant Jonathan never lived to see his full success. So many people have shown the love to ensure that today Jonathan's legacy is one of lives saved. Let's keep going. Learn more and make a life-saving gift in memory of Jonathan: marfan.org/larsonlove #LarsonLove #JonathanLarson #RENT30 #Rent #SeasonsofLove #Marfan #Marfans #MarfanSyndrome #AorticDissection

April 29th is Undiagnosed Day. Did you know that the Marfan Foundation welcomes those seeking diagnosis of a connective tissue condition to many of our events, programs, and support services? So many people in our community live for years trying to nail down their exact genetic variant with experts knowing they have something in the connective tissue family of conditions, while the exact "what" remains a mystery. Know we're fighting for you. We see you. Comments on your experiences welcome. #KnowConnectThrive

Walk for Victory is coming to a community near you in the weeks ahead. Join us for this non-competitive event that's a lot like a family picnic with something for everyone! 💜Raleigh: April 25th marfan.org/walknc 💙Tampa: April 25th marfan.org/walktampa ❤️ Denver: May 9th marfan.org/walkdenver 💚 New York, NY: May 9th marfan.org/walknyc 💜 Washington: May 9th marfan.org/walkdc 💙 Iowa: May 16th marfan.org/walkiowa ❤️ Pittsburgh: May 16th: marfan.org/walkpittsburgh 💚 Northern California: May 30th marfan.org/walknorcal 💜 Philadelphia: May 30th marfan.org/walkphilly 💙 Pacific Northwest: June 6th marfan.org/walkpnw ❤️ Milwaukee: June 7th marfan.org/walkmilwaukee 💚 Boston: June 14th marfan.org/walkboston 💜Chicago: June 20th marfan.org/walkchicago 💙Central Virginia: June 27th marfan.org/walkvirginia ❤️Michigan: June 27th marfan.org/walkmichigan 💚New Jersey: June 28th marfan.org/walknewjersey #MyWalkSavesLives #Marfan #LoeysDietz #VEDS #Stickler #KnowConnectThrive #WalkforVictory

Get empowered. Make connections. Learn to thrive. Join us on Oct. 10 in London for the Second International Symposium on Living Better with Marfan, Loeys-Dietz, VEDS and Stickler. Register: ow.ly/m7Ii50YNJUy Attendees will learn from a team of international medical experts, network with professionals and others on a similar medical journey, and enjoy a “Creating Connections” lunch. Breakfast is also available and activities for Children 5-12 will be provided in a separate area. The symposium is free, but registration is required. #Marfan #LoeysDietz #VEDS #SticklerSyndrome #London #England #KnowConnectThrive

Come out and meet your new besties, reconnect with friends, and talk to local experts at the 2026 Tampa Walk for Victory. There's still time to register: marfan.org/walktampa Saturday, April 25, 2026 10:00 a.m. – 1:00 p.m Water Works Park, 1710 N Highland Ave, Tampa, FL 33602 Join us as we spread awareness and raise funds to support the Marfan Foundation's mission! Walk for Victory is a community-focused, family-friendly event with lunch, kids activities, and a short, non-competitive walk. #Tampa #Florida #Marfan #LoeysDietz #VEDS #SticklerSyndrome #MyWalkSavesLives

Walk for Victory isn't about walking - it's about community, and there's something for everyone. Every walk is unique, but there's always music, a chance to enjoy a meal together with people who just get it right away, fun activities like face painting, the opportunity to informally meet hometown experts, and most of all time with your local community of folks living with Marfan, Loeys-Dietz, VEDS, Stickler and related conditions. Find your walk: marfan.org/walk and watch this video of our recent South Florida Walk for Victory. The walking portion of our events is short and optional. People of all physical ability levels will find a welcoming community and plenty to do at these events - which are more like family reunions or picnics. All that's missing? You! #MyWalkSavesLives #WalkforVictory

“Questo fine settimana: Non perderti questa sessione informativa. Sabato 18 aprile 2026 dalle 14:00 alle 16:30 (CEST). Riservo il tuo posto: marfan.org/calendar/simpo…

Experience Camp Victory—and scholarships are now available! This July, join us in Georgia or California for a week filled with connection, confidence-building, and unforgettable fun. Camp Victory is more than just a summer camp—it’s a community that understands you. From swimming to creative activities to group games, campers build friendships and memories that last a lifetime. Scholarships may cover both travel and registration costs. (Scholarships are also available for our two family camps held in the fall.) Learn more and apply today: marfan.org/campvictory #MarfanSyndrome #Marfan #MarfanFoundation #CampVictory2026 #SummerCamp2026 #VEDS #LoeysDietz #Stickler

This one isn't easy to talk about, but it's lifesaving. 30 years ago, Jonathan Larson lost his life for two reasons: 1. He didn't know he had Marfan syndrome and a 250x greater risk of aortic dissection 2. Medical pros sent him home from the hospital, because he was young and "healthy" - they didn't recognize he was having a tear/ripping of his aorta called aortic dissection that would end his life. Learn more at marfan.org/larsonlove Know and share the signs of Marfan and aortic dissection in memory of Jonathan. When people know they have Marfan syndrome, they can seek expert care and get imaging on a regular basis that measures their aortas - keeping them safer, reducing the chances of an aortic emergency, and vastly increasing the potential for a long life. When everyone from first responders, to ER pros, to the general public recognizes the critical signs of an aortic dissection - fast imaging and emergency surgery can saves lives. We honor Jonathan's life-saving legacy every time we share 💜 #LarsonLove #AorticDissection #KnowtheSigns #AortaEd

Our community members are why and how. Hey everyone, look what we accomplished together! The NonProfit Times has named the Marfan Foundation the #5 top non-profit headquartered in the United States. 💜💙 marfan.org/2026/04/10/mar… ❤️💚 Our staff team loves what we do, because we truly love each of you in the Marfan Foundation family. Thank you for making this possible. Together we make rare mighty! #Marfan #LoeysDietz #VEDS #Stickler #NonProfitTimes #BestNonProfits

"I’m running for Team Victory again this year because I have VEDS, care a lot about this cause...and want to keep going while raising awareness and funds for VEDS [and related conditions]." Click here If you'd like to support Grace's run and all those living with VEDS, Marfan syndrome and related conditions: socialsync.app/fundraiser/cr-… Please note: Grace has been medically cleared by her providers to run in a marathon setting. Before embarking on any physical activity, please review benefits and risks with your expert provider - doing so is especially essential for people living with genetic aortic and vascular conditions. #ParisMarathon #VEDS #MarfanFoundation #TeamVictory #Marfan #LoeysDietz #Stickler

Last chance to register for tomorrow's webinar! How does Loeys-Dietz syndrome (LDS) affect hearing and balance? Join us for an informative webinar on April 8 at 1:00 pm ET regarding hearing and ear-related findings from an LDS-focused study at the NIH. 📣 Register here: marfan.org/calendar/insig… NIH experts will share key research findings and what these insights mean for patient care and long-term monitoring. Learn about: • Hearing and balance in LDS • Audiology and otology assessments used in research • Emerging findings and clinical implications • The importance of ongoing monitoring Stay informed. Stay connected. Help advance awareness in the LDS community. #LoeysDietzSyndrome #MarfanFoundation #NIH #KnowConnectThrive

HUGE ANNOUNCEMENT! This is our moment to take the word "Marfan" from rare to mainstream. We're asking the entire Foundation family to participate and help us spread the word. 1. Take the #LarsonLove challenge, lip synch, duet, or sing Seasons of Love 2. Urge everyone to learn about Marfan syndrome in memory of Jonathan at marfan.org/larsonlove 3. Nominate 3 friends to take the #LarsonLove challenge Right now, we're "in previews" with our community members kicking off this campaign. We will be doing a big public push starting 4/13. Jonathan Larson, creator of Rent, lost his life to undiagnosed Marfan syndrome and related aortic dissection 30 years ago. In his memory, we're raising awareness during this milestone year that commemorate both his tragic passing and the opening of Rent - which changed theater forever. Together, we will save lives for all people living with genetic aortic and vascular conditions. We are so grateful to the Larson family for their support of this awareness campaign. #LarsonLove

"I’m running the Paris Marathon to support the fight against vascular Ehlers-Danlos syndrome (VEDS), a rare genetic condition that affects the daughter of a dear friend of mine, Sofía María." 👟 socialsync.app/fundraiser/cr-… #ParisMarathon #Paris #Marfan #VEDS #LoeysDietz

We hope that those who celebrate have been enjoying a meaningful Passover with loved ones, and we wish those commemorating Easter this weekend a joyous and hopeful time with friends and family. We send warm thoughts of peace and renewal to the entire Foundation Family. #Marfan #LoeysDietz #VEDS #SticklerSyndrome

"I’m running the Paris Marathon in support of Marfan Syndrome research and care because of...our close friend, Nora Baker. Nora’s strength, resilience, and infectious silliness in the face of Marfan Syndrome have touched our entire friend, family, and school community. Through her openness and advocacy, she has [recruited] many champions for the cause including my daughter, one of Nora’s besties, who proudly wears her 'Team Nora' T-shirts multiple times a week." We're cheering on Katie and all of Team Nora; Support their efforts here: ow.ly/z61750YC5Sl #ParisMarathon #MarfanTeamVictory #Marfan #MarfanFoundation #VEDS #LoeysDietz #Stickler