Connective Issues Spring/Summer 2026

Spring/Summer 2026

NEW EXERCISE & PHYSICAL ACTIVITY RESOURCE

FOUNDATION CELEBRATES 45TH ANNIVERSARY

DISSECTIONS BEYOND THE AORTA

The Marfan Foundation drives research, education, and support—and builds community—to improve outcomes, save lives, and empower all people to thrive who are living with Marfan, Loeys-Dietz, Vascular Ehlers Danlos syndromes and related genetic aortic and vascular conditions. We work tirelessly to advance research; educate patients and families, medical professionals, and the general public; and provide a supportive community for all affected by these conditions. Learn more and get involved at Marfan.org. CONNECTIVE ISSUES SPRING/SUMMER 2026 VOLUME 45 | NUMBER 2 Connective Issues is the newsletter of the Marfan Foundation. It is published three times per year. Inquiries should be addressed to: brandcomms@marfan.org This issue of Connective Issues is made possible through a grant from The Chu and Chan Foundation. Connective Issues is produced by: Executive Editor, Lead Writer: Susan Benvenuti Foundation VP, Integrated Marketing Communications Visual Consultant: Kim Fischer Graphic Designer Contributing Strategist: April Dawn Shinske Foundation Chief Communications and Marketing Officer Contributing Writer: Olivia Abel Foundation Marketing Communications Director THE MARFAN FOUNDATION 22 MANHASSET AVENUE PORT WASHINGTON, NY 11050 516-883-8712 | 800-8-MARFAN MARFAN.ORG

Greetings, We are so glad you have picked up or clicked through to the latest issue of Connective Issues , the Marfan Foundation’s flagship magazine. Whether you have been part of the Foundation family for many years or are newer to our community, we’re really glad that you are with us. We are amid another exciting season at the Marfan Foundation. We are getting ready for our Global Virtual Conference, which takes place 6/15 – 6/18. Our virtual conference is held every other year to help ensure access to our resources both domestically and around the world. We look forward to seeing you there, virtually. Here are a few of the “can’t miss” stories within the pages of this Connective Issues : • We’re celebrating our 45 th anniversary by highlighting 45 special moments in the Foundation’s history. Which milestones do you remember? What is your greatest hope for the future? Check out the story. • We’ve updated our Physical Activity Resource to center on shared decision-making between healthcare professionals and community members and choices focused on individual situations rather than broad general advice—both major shifts. • We often talk about Type A aortic dissections, but the reality is many members of our community experience dissections and ruptures outside that area of the aorta. Don’t miss the story about these less-frequently-discussed but critical-to-understand dissections. Awareness is key to thriving! • Transitioning from being a child living with family to a young adult living independently is a leap that comes with exciting new possibilities and a fair share of challenges. When an individual is living with a genetic aortic or vascular condition, ordinary changes can be compounded by the need to take on additional responsibility for one’s own healthcare roadmap. We’re sharing tips—thanks to Cincinnati Children’s Hospital— that we hope will prove helpful during this important time of life. In the 45 years since the Marfan Foundation began in 1981, we have seen tremendous medical advancements, resulting in many more community members experiencing comparable longevity to the general population with appropriate medical management. We’re working to achieve a world where such progress is possible for every genetic aortic or vascular condition. Your investment in research, education, support, and programming makes our ability to continue to help countless people possible. Thank you! Onward!

Michael L. Weamer, President & CEO

ON THE COVER : Team Belmont came together at the Walk for Victory in Nashville to honor the life of Kayley Tigges. Organized by her close friend and college roommate, Keira Maupin (center), the team raised awareness and supported those living with Loeys-Dietz and related conditions, and their loved ones.

New Exercise and Physical Activity Resource: A More Balanced Approach

For many people living with Marfan, Loeys-Dietz, or Vascular Ehlers Danlos syndromes (VEDS)—and oftentimes their healthcare teams—physical activity has long been approached with uncertainty, often shaped by caution and, at times, fear. A new resource created by medical leaders in the field for the Marfan Foundation is helping to reframe that conversation, offering a more balanced and individualized approach to staying active. At its core, the message is clear: movement matters. Physical activity supports not only cardiovascular health, but also emotional well-being, independence, and overall quality of life. And with the right guidance, most people can safely incorporate movement into their daily routines. “The updated recommendations reflect a more nuanced and individualized approach to physical activity,” said Dr. Alan Braverman, a member of the Foundation’s Professional Advisory Board, who helped develop the resource. “Rather than applying broad restrictions, recommendations take into account factors such as the specific diagnosis, age, level of activity, and personal goals.”

The New Resource Highlights: • Importance of Exercise and Physical Activity • Shared Decision-Making • Physical Activity in Children • Physical Activity in Adults • Condition-Specific Information • Medications & Physical Activity • Lifestyle Factors That Affect Exercise • When a Genetic Aortic or Vascular Condition is Suspected but Not Confirmed • References & Additional Resources • Types of Exercise • Rate of Perceived Exertion (RPE) Scale • Adaptive Physical Activity

This marks an important shift from earlier approaches, which often emphasized general limitations. While safety remains central, the new resource recognizes that there is no one size-fits-all answer. Instead, it encourages shared decision-making between individuals, families, and healthcare professionals to determine what is both safe and meaningful. That shift is especially important for families,

according to Dr. Josephine Grima, the Foundation’s chief science officer. “There has been a sense that exercise is unsafe or should be avoided,” she said. “This information now explains how safe and age-appropriate exercise is good for overall health, healthy competition, and inclusion for children.” The resource was developed by a multidisciplinary group of experts in cardiology, pediatrics, and sports medicine, drawing on the latest scientific statements and clinical experience. It also reflects a growing understanding that the benefits of physical activity extend well beyond physical health. For children, that includes the ability to participate in play, sports, and social activities alongside their peers. For adults, it means maintaining strength, mobility, and confidence over time. Across all ages, the emphasis is on finding sustainable ways to stay active without unnecessary restriction. Importantly, the resource also highlights differences between conditions. While there are shared principles, factors such as vascular fragility in VEDS or cervical spine considerations in Loeys-Dietz may influence how activity is approached. This reinforces the need for individualized planning. “Physical activity is important at every age. It supports physical health, emotional well-being, and overall quality of life,” Dr. Braverman said. “With appropriate guidance and individualized planning, most people…can safely incorporate movement and exercise into their daily lives.” Ultimately, the new resource reflects a more empowering perspective, one that prioritizes safety while also recognizing the importance of living fully. *Always consult with your healthcare provider/team prior to starting a new exercise or changing your exercise routine.

Scan the QR code to read the new exercise and physical activity resource or download at Marfan.org/PhysicalActivity

If you have questions about physical activity, contact your healthcare team or reach out to the Foundation’s Help & Resource Center at Marfan.org/ask .

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BEYOND THE AORTA Dissections Throughout the Body When people hear the words “dissection,” they often think of the aorta. It’s the complication most often discussed in conditions like Marfan, Loeys-Dietz, and VEDS. But dissections don’t only happen in the aorta. “They can occur in the carotid, subclavian, and even lower extremity arteries,” says Dr. James Black, a vascular surgeon at Johns Hopkins Medicine and a member of the Foundation’s Professional Advisory Board. While these events are discussed less often, they are not necessarily rare. For community members, dissections beyond the aorta can look very different from person to person.

“Arterial dissections usually have the abrupt onset of severe pain. This sets it aside from other aches and pains.” Dr. James Black

Knowing the Risk Different genetic conditions carry different risks when it comes to dissections beyond the aorta. According to Dr. Black, non-aortic dissections tend to be more common in some conditions like Vascular Ehlers-Danlos syndrome (VEDS), emphasizing the importance of individualized care and awareness. For the affected community, this means understanding that vascular risk isn’t limited to one part of the body. Cristobal Castillo Lackington, who lives with VEDS, has experienced dissections in multiple arteries, including both carotids, a renal artery, a coronary artery, and the abdominal aorta. “For each dissection, my symptoms differed based on the location,” he explained. “The carotid dissections felt like a persistent headache, the abdominal one caused strong stomach pain, and the coronary dissection was sudden and caused extremely intense chest pain.” His experience highlights a key challenge: symptoms can vary dramatically depending on where the dissection occurs. Recognizing the Signs As with Cristobal, one characteristic often stands out among dissections: sudden, severe pain. “Very similar to aortic dissection, arterial dissection usually has the abrupt onset of severe pain,” said Dr. Black. “This sets it aside from other aches and pains that people will have often related to physical activity or periods of exertion.” But that pain doesn’t always present the same way. While some dissections present with sudden, severe pain, others may cause few or even no noticeable symptoms. For Elizabeth McAllister, who lives with Loeys-Dietz syndrome, it began during an everyday moment, shopping for sprinkles to bake Christmas cookies with her children. “I had sudden onset chest pain and a feeling of heavi ness,” she said. “When the pain increased and began radi

ating down my left arm…I knew something wasn’t right.” She was experiencing a spontaneous coronary artery dissection (SCAD), which led to a life-threatening heart attack. According to Dr. Black, others may experience: • Persistent headaches (carotid dissections) • Abdominal pain (mesenteric or aortic branches) • Limb symptoms or unusual discomfort • Unusual or localized pain that feels different from typical strain The common thread is that something feels different and often very intense. When Diagnosis Can Be Challenging One of the most difficult aspects of non-aortic dissec tions is that they can be harder to recognize, and some times even missed. Some may occur without symptoms, making monitoring especially important. “Still, some arterial dissections can occur asymptom atically, so the utility of surveillance for some conditions is very important,” Dr. Black said. “Surveillance screening at dedicated points of age or surveillance intervals make sense for some of these patients.” In Elizabeth’s case, additional imaging later revealed a separate carotid artery dissection that had caused no symptoms and is now being monitored. This is why aware ness is so critical. Monitoring Beyond the Aorta For people with genetic vascular conditions, care often extends beyond the aorta.

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“Each dissection was a terrible experience, but somehow after everything, things tend to get better again.” ~Cristobal Castillo Lackington

“Surveillance usually requires imaging from head to toe,” explained Dr. Black. “But care is tailored based on individual risk and history.” Monitoring may include: • CT scans (CTA) • MRI/MRA • Ultrasound for certain peripheral arteries In many cases, dissections outside the aorta can be managed without immediate intervention. “Some peripheral arterial dissections can be watched with ultrasound,” said Dr. Black. “This allows for monitoring without repeated radiation exposure or invasive procedures. The location of the dissection plays a major role in how it “The location of the dissection outside the aorta substantially dictates both the clinical course and how patients will manifest these dissections,” said Dr. Black. Treatment decisions depend on the artery involved, the severity of the dissection, and whether blood flow is compromised. But across all scenarios, one theme is consistent: medical management matters. “The avoidance of behaviors and conditions that contribute to atherosclerosis is important,” said Dr. Black. “This means avoiding smoking, managing cholesterol, controlling blood pressure, and engaging in regular exercise [under medical guidance and supervision]. All of these are attributes of a lifelong plan.” The Emotional Aspect Beyond the physical impact, dissections can reshape how people see their health and their lives. “Sometimes I struggle with hopelessness…and the idea that something might happen,” said Cristobal, describing the emotional weight of living with repeated vascular events. Despite these challenges, he remains focused on the positive. “I like my life now.” presents and how it is treated.” Treatment and Prevention

Elizabeth also experienced a similar shift in perspective after surviving her heart attack. “Not everyone gets a second chance at life,” she said. “I try to find joy in each day.” Advocacy Can Save Lives A recurring theme across these experiences is the importance of self-advocacy. Elizabeth credits initial advocacy for her son with leading to her family’s diagnosis of Loeys-Dietz syndrome. “It feels important to understand my options and be able to ask thoughtful questions,” she said. Cristobal recognized a connection with others in the community as a way to stay grounded and hopeful. Together, their experiences provide a message to others: listen to your body, speak up, and seek care when something doesn’t feel right. Looking Ahead As awareness grows, so does the ability to detect, monitor, and treat dissections throughout the body. Dr. Black points to advances in medical therapy and a deeper understanding of these conditions as reasons for optimism. For those affected and their families, the message is to know your body, stay engaged in your care, and don’t ignore something that feels different. Because when it comes to dissections, the location matters, but awareness matters even more.

“Not everyone gets a second chance at life. I try to find joy in each day.” ~Elizabeth McAllister

If you have non-emergency medical questions, reach out to our Help & Resource Center at Marfan.org/ask .

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Ready, Set, Transition: Helping Teens Step into Adult Care For families navigating life with a genetic aortic and vascular condition, the move from pediatric to adult care can feel like a mixed milestone. The transition often marks the first time a young person is expected to take primary responsibility for their health by managing appointments, medications, and decisions that were once made by parents/caregivers and a familiar pediatric healthcare team.

What Transition Really Means At its core, transitioning to adult care is about building confidence and capability. It’s the gradual shift from parent led care to a young adult who understands their condition, manages medications, communicates with providers, and makes informed decisions. “We’re not expecting perfection,” Alissa explained. “We’re helping patients build skills gradually, so they feel prepared, and not overwhelmed, when they enter adult care. We are also supporting parents through this change. Transition is not phasing parents out—it’s inviting teens to take a more active, shared role in their own care.” Programs like the one at Cincinnati Children’s clinic take a multidisciplinary approach, offering education, coordination, and clinical support tailored to each patient. The emphasis is on meeting teens where they are and helping them grow from there. Starting Early is Key One of the most important takeaways: transition begins earlier than many families expect. The adolescent checklist (see the Age Group Skills for Transitioning to Adulthood chart on page 7) outlines how skills build over time. Ages 12–14: Learning the basics—understanding their condition, speaking up during appointments, and beginning to participate in decision-making Ages 15–17: Taking on more responsibility—managing medications, scheduling appointments, and understanding how genetic aortic conditions may impact life choices 18 and beyond: Preparing for full independence— navigating insurance, maintaining a portable medical summary, and establishing adult care providers This gradual approach helps establish independence and reduces the “cliff effect” many families experience when pediatric care ends. “Transitioning to adult care is a process, not a one-time event,” said Ashley Neal, MD, MEd, a pediatric cardiologist who works alongside Alissa Meek, RN, BSN, CPN, to help patients take those steps at the Marfan and Aortic Disease Clinic at Cincinnati Children’s Hospital Medical Center. “Our goal is to help adolescents move from a dependent role in their healthcare to one of independence at a pace that matches their abilities.” Ashley Neal, MD, MEd and Alissa Meek, RN, BSN, CPN 

Using Tools for Evaluation A key tool the Cincinnati Children’s team uses in this process is the validated Transition Readiness Assessment Questionnaire (TRAQ). Rather than testing knowledge, TRAQ evaluates teens’ readiness to learn real-world skills necessary for lifelong medical follow-up like managing medications, scheduling appointments, and responding to emergencies. The answers provide the team with an understanding of where a teen is in the transition process and what skills need to be strengthened. The experts stress there are no right or wrong answers, and there is no one-size-fits-all approach. “This isn’t about passing or failing,” Dr. Neal said. “It’s about understanding where a patient is today so we can support what comes next.” Building Skills Between Visits Transition doesn’t just happen in the clinic. Some of the most meaningful growth happens in everyday life. Families can support independence by gradually shifting responsibility in areas like: • Taking medication consistently • Understanding when to seek urgent or emergency care Even a small step like having a teen speak during an appointment can build confidence over time. “Promoting collaboration with the medical team is essential,” said Alissa. “We want teens to feel like active participants in their care, not just observers.” Tools That Can Make a Difference There are a few simple tools that the experts at Cincinnati Children’s recommend that can have a big impact on readiness and help with a smoother transition. These include: • Medical ID apps or bracelets that ensure critical infor mation is accessible in emergencies • Scheduling and attending appointments • Communicating symptoms or concerns

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A Patient Perspective on the Transition to Adult Care “The transition was so smooth, I didn’t even notice.” “One of the greatest things about being a patient at Cincinnati Children’s is how seamless the transition to adult care felt. I didn’t even notice it was happening. I was diagnosed with Loeys-Dietz at 19, and while that was a difficult time, my care team made it easier. Being open-minded made a big difference. I wanted to learn everything I could about my condition, how my body works, and how to take care of myself. I’ve also been open with my friends, and that support has meant so much. If you do have to transition to a

• A portable medical summary that helps young adults communicate their history clearly, such as a wallet-sized card that can be kept in a wallet, purse, or backpack (it can be generated online and downloaded for free) • Patient portals like MyChart that support direct com munication and appointment management Addressing the Emotional Side While much of a transition focuses on skills, the emotional shift can be just as significant for both teens and parents. Letting go of control can be difficult, as can stepping into responsibility. “Transitioning is a team effort between the teen, parent, healthcare team, and others,” said Dr. Neal. “Everyone plays a role.” According to Alissa, it’s okay not to have all the answers right away. “No one expects teens to have everything figured out—and they don’t need to. Adulthood is something we grow into. With support and practice, we all find our footing.” Finding Empowerment Along the Way For families in the Marfan, Loeys-Dietz, VEDS, Stickler, and related conditions community, transitioning to adulthood is more than a handoff between providers. It’s a journey toward independence, confidence, and lifelong self-advocacy.

new care team, it helps to stay open and remember you’re still the same person, and you’ll continue to get the support you need. For parents, I think it’s important to share information as your child grows. Knowledge

is power. Understanding my condition has made me feel stronger and more confident in managing my health.” ~ Colette Wagner

With the right tools, guidance, and support, that journey doesn’t have to feel overwhelming. Instead, it can be empowering. Age Group Skills for Transitioning to Adulthood *

Carries a medical information card/wears a medical alert bracelet Speaks up for self at doctor visits Meets with the doctor without parent/guardian in the room Helps make healthcare decisions with doctor Describes health condition and medical history, including any surgical repairs Lists healthy lifestyle choices for food, exercise, and stress Describes effects of smoking, alcohol, and drugs on health condition

EARLY TRANSITION SKILLS Age 12-14 years Health Passport/Medical Emergency Plan

Knows HIPAA rights and changes after 18 years Calls doctor for any problems Schedules own appointments Lists medications, dosages, and reason for taking them Takes own medications Takes care of managing own prescription refills Begins age-appropriate conversations with healthcare team about safe sex and how their genetic aortic and vascular condition may affect sexuality and reproductive health Knows whether SBE prophylaxis is necessary before invasive procedures (dental work, tattoos, piercing) Describes life plan (job, college, sports, hobbies, etc) and how it may be affected by health condition Lists resources for accessing adult services Has access to an updated portable medical summary Has an adult PCP and/or plan for medical coverage if away from home Knows when to call for routine, urgent, and emergency care including 911 Describes plan for health care coverage as an adult Manages insurance at doctor visits (forms, contact for questions) Demonstrates emerging self-management skills with finance management, meals, and transportation

MIDDLE TRANSITION SKILLS Age 15-17 years Life Plan

LATE TRANSITION SKILLS Age 18 & beyond Transfer Plan

*Adapted from Cincinnati Children’s

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YEARS OF IMPACT

The Marfan Foundation Journey Since Antoine Marfan first described the condition in 1896, understanding of Marfan syndrome has advanced dramatically. Over the past 45 years, the Marfan Foundation has led the charge in research, education, and support for those affected by Marfan and related conditions. With each breakthrough, we’re getting closer to what once seemed out of reach: a cure. And we’re just getting started. As we forge ahead, let’s celebrate the progress, the people, and the possibilities that have brought us this far.

1981

1984 5 The power of print: The first edition of our tri-annual magazine, Connective Issues , is published and sent to 1,500 people. Today, the award-winning magazine reaches 20,000 people in print and digitally. Marfan syndrome, and its life-threatening risks, steps into the national spotlight with the Newsweek cover story “ Gene Doctors ,” which highlights groundbreaking genetic research at Johns Hopkins. 6

1987 10 NMF headquarters opens in the Mertz Building in Port Washington, NY with two paid staffers and one phone line. The Foundation was able to purchase one computer from IBM with a $3,000 Mertz Grant.

Inspired by the success of community-driven

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movements among people living with dwarfism, Reed Pyeritz, MD , PhD, envisioned a network of support for those with Marfan syndrome. On May 10, 20 people gathered at the Baltimore home of his mentor, Victor McKusick, MD , for the first meeting of what would become the National Marfan Foundation (NMF).

1986

1991 11 A defining step in Marfan research: Foundation connected scientists, convened in Cold Spring Harbor, NY, by Priscilla Ciccariello, identify and describe the FBN1 gene . Mutations in the gene are shown to cause Marfan syndrome, solving a long-standing medical mystery. 12 The NMF launches its toll-free hotline to help

7 The Foundation awards its first research grant to Dr. Dianna Milewicz for her study: Abnormalities in Fibrillin Observed in Cells from People with Marfan Syndrome .

2 NMF grows from a small, volunteer-driven effort into a national organization, led by founding figures Dr. Pyeritz; Dr. McKusick, widely known as the father of modern genetics; and “Marfan Mom” Priscilla Ciccariello . Priscilla served informally as the volunteer director of the Foundation for years to follow. Our Professional Advisory Board (PAB) of healthcare providers and scientists is established; Dr. Pyeritz serves as the first chair. 1982 4 The first NMF Conference — attended by 50 community members—is held in Baltimore. 3

US Volleyball Olympic Team Captain Flo Hyman passes

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away during a game from an aortic dissection related to undiagnosed Marfan syndrome. Her tragic loss greatly increases interest in the National Marfan Foundation.

answer questions from both community members and medical providers.

9 The Foundation establishes a Scientific Advisory Board (SAB) with Dr. McKusick as the first chair. The purpose is to evaluate research proposals and their merit for funding.

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1994 13 Carolyn Levering is appointed as the NMF’s first paid executive director. She later becomes the first president & CEO. Under

1998 19 The Marfan Artists Project in New York City, hosted by Liz Claiborne executive Karen Murray, raises $65,000—launching what later becomes the annual Heartworks Gala. A “Marfan Mom,” Murray continues her decades- long support of the Foundation. 1999 20 The NMF Conference offers structured children’s and teen programs for the first time. 21 The annual Heartworks Gala, held at the Liz Claiborne venue in New York City, raises nearly $200,000; the first Hero with a Heart Award is presented. 2000 22 The Research Millennium Initiative begins, enabling the Foundation to award $100,000 in research grants for the first time. 23 A wave of national media coverage spotlights Marfan syndrome: Dr. Hal Dietz & Karen Murray appear on The Today Show . The following year, ER features the condition, and major outlets like

her leadership, the Foundation vastly increased research grant funding, educational programs, media coverage, patient support, and fundraising. In its first testimony before the House Appropriations Committee, the NMF—alongside the Coalition for Heritable Disorders of Connective Tissue— urges increased federal funding for connective tissue research. Delivered by member Scott Kiefer, the testimony helped secure a congressional directive to fund research. 15 The Foundation’s mission expands to include related connective tissue conditions. 14 1995 16 A landmark study in The American Journal of Cardiology shows life expectancy for people with Marfan syndrome increased from 48 in 1972 to about 72 by 1993, thanks to improvements in diagnosis and treatment. 1996 17 The NMF launches its first website to increase public awareness and provide information about its programs. 18 Jonathan Larson , creator of the blockbuster Broadway musical Rent , dies from an aortic dissection related to undiagnosed Marfan syndrome the night before the show’s premiere. In an investigation, the New York State Department of Health cited the NMF as the “lead advocate for people with aortic disease.” Larson’s legacy endures, raising widespread awareness of the condition.

2005 25 At Johns Hopkins, Loeys– Dietz syndrome (LDS) is discovered and named as a distinct connective tissue condition, expanding recognition of related genetic aortic conditions. 2006 26 With funding from the Foundation, researchers at Johns Hopkins publish a study showing Losartan prevented aortic aneurysm development in mice. 27 The National Registry of Genetically Triggered Thoracic Aortic Aneurysms and Cardiovascular Conditions (GenTAC) is launched with advocacy from the Marfan Foundation, becoming a vital research resource for Marfan syndrome and related aortic conditions. 2007 28 The NMF provides patient support, promotes enrollment, and arranges publicity and funding for a major clinical trial on the drug Losartan . In 2014 the trial’s results indicate that Losartan is another medication option for Marfan syndrome, in addition to Atenolol, as it also slows the rate of aortic enlargement.

The New York Times follow, dramatically raising public awareness.

2003 24 The Foundation collaborates with The Wall Street Journal on a yearlong series about aortic aneurysms and dissection. The author nabs a Pulitzer Prize for his reporting on this critical, often underrecognized, medical issue.

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2008 29 The NMF champions the Genetic Information Nondiscrimination Act (GINA) , which passes with near-unanimous support in Congress, protecting individuals from discrimination based on their genetic information. 2009 30 NMF moves into the world of social media by establishing a Facebook account .

2021 40 The first virtual conference is held for four days in July during the COVID-19 pandemic with 3,000 registrants from 75 countries. 41 The Foundation—working towards a cure—creates the Everest Awards , the largest grant mechanism to date, designed to drive transformative change. 2022 42 The first Virtual Spanish- Language Summit is held, attracting more than 350 attendees from 23 countries. The event is held for the next four years. 2024 43 The first International Symposium for community members—focused on “Living Better” with connective tissue conditions—is held in London. 2025 44 The Foundation changes its mission, vision, and tagline to better reflect an empowered community. It also launches its first podcast: Know. Connect. Thrive.

2016 34 After walks in Phoenix, Boston, Long Island, and Dallas in 2014, the formal Walk for Victory program is established as a flagship community and fundraising event for the organization. Ten years later, there are more than 24 annual walk events around the country. 2018 35 The first-ever Camp Victory is held for five days in Warm Springs, GA for children 5-18. The medically-supervised camp experience has since expanded into summer sessions for kids in Georgia and California, and two fall family camps. 2019 36 In October, the VEDS Movement is launched “to save lives and improve the quality of life” for people living with Vascular Ehlers-Danlos Syndrome. 2020 37 The Loeys-Dietz Syndrome Foundation officially becomes part of the Foundation, billed as a “great next step” for both organizations. 38 GenTAC becomes “powered by” the Marfan Foundation. In 2025, GenTAC is rebranded as the Genetic Aortic Network and becomes an official division of the Foundation. 39 Virtual support groups start during the COVID-19 pandemic.

2013 31 The organization undergoes a major rebrand – creating a new logo, tagline (“Know the Signs. Fight for Victory”), and name: it’s now officially the Marfan Foundation.

2015 32 Michael Weamer is

appointed President & CEO, ushering in a decade of transformative growth, expanding the Foundation’s global reach, strengthening its financial and organizational foundation, and broadening its mission to serve multiple genetic aortic and connective tissue conditions. developed in collaboration with top experts, explicitly state that “aortic valve-sparing surgery is preferred to aortic valve replacement” to avoid lifelong anticoagulation therapy, particularly in elective cases where the aortic root is 4.5–5.0 cm. 33 The Foundation’s new management guidelines,

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2026 We continue to expand our online impact—reaching 8.4M people via social media, generating 22.7M impressions for the first time, and driving 5M website interactions with our community members.

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For many teens living with Marfan, Loeys-Dietz, VEDS, Stickler, or a related condition, finding others who truly understand their experience can be life-changing. Through its teen program, the Marfan Foundation has created that space just for teens built on connection, learning, and support. “I facilitate the teen program alongside community member, volunteer leader, and longtime friend Peter Donato,” said Dominga Noe, who has been the Foundation’s teen program manager since 2021. “We facilitate the monthly virtual events and plan and execute the programming for both the virtual and in-person conferences.” For Dominga, the role is deeply personal. Having grown up in the teen program herself, she understands its impact firsthand. “The most rewarding part of leading this program is giving back to the program that changed my life,” she said. “I made lifelong relationships that have shaped my experience living with Marfan syndrome. It was a place where I could ask questions, connect with leading healthcare professionals, and meet incredible people, many of whom later became part of my support system when I went through open-heart surgery.” Through the teen program, she is focused on creating that same sense of belonging for the next generation and for the “chance to simply be themselves.” “Connecting with others who share similar experiences is incredibly powerful,” Creating Space for Teens to Connect, Belong, and Grow

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The Marfan Foundation

teen programs are very dear to my heart and have helped me in so many ways while navigating living with a connective tissue disorder. Through the teen programs, I’ve been able to get guidance from peers as well as adult leaders who have similar medical conditions. The programs also help teens make connections and friends with others our age that have had similar experiences. The monthly teen talks and game nights are an especially good way to get to know each other and talk about everything from interests to school to doctors’ appointments and medical conditions. I’ve been able to make many friendships through the teen program that have helped me get through some tough times where otherwise, I might have felt alone.” ~Hannah Dammann

Dominga said. “Teens can talk about their conditions if they want to, but they can also just hang out without having to explain their diagnosis.” That sense of connection is central to everything the program offers. Monthly events like Teen Game Night and Teen Talk provide regular opportunities to build friendships, ask questions, and learn from

peers and mentors. Teen Talk, originally created during the pandemic, has grown into a vibrant space for open conversation. As Dominga put it, “It’s a discussion for them and by them.” Teen Program Leaders Peter Donato and Dominga Noe 

GET INVOLVED!

Visit Marfan.org/calendar to sign up for Teen Game Night and Teen Talk. Register to attend the Global Virtual Conference, June 15-18, at Marfan.org/conference . Have questions? Reach out to the teen program managers at teen@marfan.org.

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From Lived Experience to Healthcare Professional How community members are shaping the future of care.

Adam Bitterman, DO, FAAOS | Orthopedic Surgeon Dr. Bitterman’s condition has helped shape his understanding of medicine and his appreciation for the responsibility that comes with it. “My personal connection to Marfan syndrome introduced me to medicine long before I ever formally stepped into it,” said Dr. Bitterman. “As a patient and as someone closely connected to the Marfan community, I experienced firsthand the uncertainty, the reliance on expert care, and the profound impact that thoughtful, compassionate physicians can have.” That perspective guides him during every patient interaction. “I understand what it feels like to sit on the other side of the exam room, to process complex information, and to carry uncertainty beyond the visit itself,” he said. “Because of that, I place a strong emphasis on communication, ensuring that patients feel heard, informed, and supported.” Advice for others: First, recognize that your lived experience is not a limitation. It is a strength. It gives perspective that cannot be taught in a textbook. Second, be prepared for a long and demanding journey, but don’t lose sight of why you started. Finally, seek out mentors and build a support system. Across our community, individuals affected by Marfan, Loeys-Dietz, VEDS, and related conditions are choosing careers in healthcare, bringing with them a perspective shaped not only by training but also through lived experience. We are honored to share a few of their storie s: For many in the Marfan Foundation community, time spent in hospitals, clinics, and exam rooms begins early, and often under difficult circumstances. But for some, those experiences spark something more: a calling to help others.

Recognize that your lived experience is not a limitation. It is a strength. It gives you perspective that cannot be taught in a textbook. ~ Dr. Adam Bitterman

Nick Metz | Aspiring Physician and Researcher Nick’s path to medicine was guided by both loss and mentorship.

After his younger brother, Connor, passed away from an aortic dissection caused by undiagnosed Loeys-Dietz syndrome, Nick became involved with the Marfan Foundation and began volunteering at conferences. “While volunteering, I met Dr. Alan Braverman, who shared with me that he had also lost a brother to a connective tissue disorder and was inspired to dedicate his career to helping others with these conditions,” Nick said. “Seeing how he transformed a personal tragedy into a lifelong mission deeply impacted me.” That experience helped define his path into healthcare. “I wanted to follow their lead, support families during their most difficult moments, and help prevent other families from experiencing the same loss that mine did.” Advice for others: The loss of my brother and friends has been incredibly painful, but it strengthens my determination to continue down this path. Each experience reinforces why this work matters and motivates me to dedicate my life to preventing these tragedies in the future.

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Nishani Patel | Future Cardiovascular Surgeon For Nishani, her own medical journey with Marfan syndrome, especially open-heart surgery, led to her decision to pursue cardiovascular surgery. “Going through my own open-heart surgery gave me a real inside look at saving lives through cardiovascular surgery,” said Nishani. “This experience, although scary, gave me patience more than anything and will help define every decision I continue to make.” That experience continues to influence how she sees her future in medicine. “I want to be the surgeon who really understands the feelings of the one on the operating table,” she said. “My goal is to help improve the long-term outcomes for families who, like mine, rely on the heart’s ability to be fixed.” Advice for others: Having a strong mind is key. Having support from family and gaining knowledge are also important . Brooke Pulliam, RN | NICU Nurse For Brooke, who lives with Marfan syndrome, the path to nursing began early with her own experience in the hospital. “Growing up and spending time in hospitals surrounded by medical professionals, I knew I wanted to be a part of the medical field,” she said. “I had my spinal fusion when I was 12, where I really experienced firsthand how special nurses are. I knew that I wanted to be that great nurse for patients and their families and to make a real impact during a tough time.” Today, that experience translates to the care she provides for others. “I think that empathy is one of the most important traits a nurse can have,” Brooke explained. “I think that my experience of being a patient as well as a family member of a patient [her mom] has made me an even more empathetic nurse.” Advice for others: Don’t give up. If you have a dream, keep at it. The medical field is huge and so diverse, so there are positions that will work for you. Each one is important and makes a real difference in people’s lives. Gabrielle Samuels, DO | Primary Care Physician Growing up with Marfan syndrome, Dr. Samuels spent years navigating the healthcare system before receiving a diagnosis, a process that would later shape her career. She still remembers the pediatric cardiologist who changed everything. “I was profoundly affected by the late Dr. Robert Boxer, the pediatric cardiologist who finally gave me a diagnosis (after 2+ years of my mother trying to get me diagnosed),” she said. He didn’t just take care of me physically, but he helped encourage my personal interests. Seeing how a doctor could deeply affect someone’s life in so many ways inspired me to try and provide that level of care to others.” Today, that experience continues to shape how she practices. “As a primary care physician, it is particularly humbling to care for the Marfan/VEDS/LDS community,” said Dr. Samuels. “I have the opportunity to connect people to a greater health care team, and care for their mind, body, and spirit.” Advice for others: I encourage others to use their own life experiences to connect with those they meet. Keep a steady moral compass and remind yourself of your purpose each and every day. Tony Yasick, MD | Anesthesiologist Dr. Yasick’s connection to VEDS began during medical school, when the condition started affecting his family. “Having family with VEDS made it more difficult but also helped me learn as much as possible, be a family resource, and advocate from within the medical community,” he said. Dr. Yasick credits having a life-threatening condition in the family for making him a better caregiver. “VEDS isn’t always obvious. Just always being aware that many people struggle with all sorts of hidden challenges has made me a more empathetic and effective physician,” he said. “Healthcare comes down to individuals, caring for, connecting with, and helping others. I grew to really value that individual connection more throughout my career.” Advice for others: I believe everyone should dream as big as possible. You can make even more of a difference for our community as a healthcare provider. Spring/Summer 2026 13

Upcoming

JUNE 6 ............ Walk for Victory: Pacific NW 7 ............ Walk for Victory: Milwaukee 9 ............ Heartworks NYC 14 .......... Walk for Victory: Boston 15-18 ..... Global Virtual Conference 20 ......... Walk for Victory: Chicago 27 ......... Walk for Victory: Virginia 27 ......... Walk for Victory: Michigan 28 ......... Walk for Victory: New Jersey JULY 5-10 ...... Camp Victory for Kids, GA 26-31 .... Camp Victory for Kids, CA SEPTEMBER 19 .......... Aortic Dissection Awareness Day 19 .......... Walk for Victory: Cleveland 25-27 ... Camp Victory for Families, GA OCTOBER 23-25 ... Camp Victory for Families, CA Scientific Meeting: Four Days of Cutting-Edge Science and Collaboration in Barcelona Leading scientists, clinicians, and researchers in genetic aortic and vascular conditions from around the world are invited to join in Science in Spain. This educational and networking event is hosted by the Marfan Foundation in collaboration with the European Society of Cardiology’s Peripheral Artery and Aortic Disease Working Group and local hosts Drs. Arturo Evangelista and Gisela Teixidó Turà. The program will include two days of basic and translational research and two days focused on clinical management and registry studies. October 4-5, 2026: 12th International Symposium on Marfan, Loeys-Dietz, Vascular Ehlers-Danlos, and Related Syndromes October 6-7, 2026: Genetic Aortic Network and the European Society for Cardiology Aorta and Peripheral Vascular Disease Joint Session Marfan.org/ScienceinSpain Marfan.org/calendar

Events

 Community members come together at the Phoenix Walk for Victory in March. Find a Walk for Victory near you at Marfan.org/walk !

International Events in October

Community Symposia: Events in London and Barcelona The Marfan Foundation, along with our Global Champion Sponsor, Terumo Aortic, is holding two international events for community members this fall. Our first International Symposium in Barcelona, a collaboration with SIMA (Marfan Syndrome Association – Spain) is on October 3. The following week, on October 10, we are collaborating with Annabelle’s Challenge, Marfan Trust UK, Stickler Syndrome UK, and The Aortic Dissection Charitable Trust for our Second International Symposium in London. Both in-person events are designed for individuals and families living with Marfan, Loeys-Dietz, VEDS, Stickler, and related conditions and feature a full day of education and connection with expert medical presenters and community members. October 3, 2026: Simposio Internacional/ Barcelona: Viviendo Mejor con Marfan, Loeys Dietz, VEDS y Stickler Marfan.org/BarcelonaSimposio October 10, 2026: Second International Symposium in London: Living Better with Marfan, Loeys-Dietz, VEDS, and Stickler Marfan.org/LondonSymposium

Read about our latest international efforts.

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WE REMEMBER AND HONOR We are grateful to our members and friends who made contributions in memory of, or in honor of, the following individuals between December 1, 2025 – March 31, 2026. Your donations support our programs and services that help empower people living with Marfan, Loeys-Dietz, VEDS, Stickler, and related conditions to thrive. Donations to Walk for Victory are not included. If you would like to remember or honor someone special, please visit Marfan.org/donate . DONATIONS IN HONOR & MEMORY

Farbstein Family Charitable Foundation Evan Feenstra Carson Fetting Allan Filler Carson Flanagan

Ava Kostick Nicole Kramer Jeremy Kravitz Patrick Joseph Kremer Todd Krueger Benjamin Kuehn Sara Kyle

Richard Coren Callie Cornely George Covington, Jr. Mickey Crabtree Blaise Martin Dafoe Mary Davis Lynn Dietz Graham DiMartino Kelly Dorgan Evelyn Ann Dostalik Michael Enbar Peggy Encinia Brother Esfandiarei William Feinstein Randall G. Ferguson Eric Fitzgerald Mark Fosdal Grace Friend Melodie K. Friesen Bryan Funk PJ Fusaro Mariana Garcia Matthew Garcia Julie Goodman Frances Graves Rosario Gregoire Randy Griffith Christina Grimes Col. John M. Grimshaw Andrew Gross Shawn Grunberger Gabi Guaipatin Linda Hacker Trenton Hall Sara Hansen Kennon Harrison Fred Hearn Richard D. Heim Shawn Heldt Vanessa Hernandez Aubrey Hilligoss Bilk Hollerman Max Hommel Kenneth Horcher David Hufnagle Scott Hunefeld Terri Hunter Dwight Hurst Eileen Ilberman Jason Jacobi Michael Lee Janowitz Ann Jarosz Christopher Jedda Kelsey Dresser Cynthia Dwyer Ryan Ellis

Dan Papke Susan Parker Zoe Patterson Violet Pekarek Molly Petersen Pamela Peterson Bill Polis Mike Powel Anne Power Elva Prohens Jim Prutow John Pumilia Grant Rambo Guidry Ramoin Joaquin Ramos River Reiner James Richardson Patrick O'Neill Riley Amanda Rivera Dani Rivers Melinda Rodriguez Leo & Sonya Roos Noa Russell Samantha Lucia Sanchez Emmir Daniell Sarip Ross Saunders Efrat Lifshitz Schwartz Carlee Schwartz Colt & Kayla Seaberg Zahrah Shahab Gurcharan Singh Spencer Skrzypiec Lauren Slack Megan Slack Evan Smolen Lucy Solove William Venson Spakes, Jr. Mila Stamer Marian Stoodley Philip Storace Leo Cole Strangstalien David Style Max Suarez Nicholas Sumberaz Amy Sumner Kadeem Swift, Jr. Matthew & Danyel Tacker Tammy and Tom Camden Tanner Lona Tanner Angels Taylor Melissa Taylor Colton Thomas Samantha Thomas Townes Turner Ana Villarruel Monique Voorn Adam Warren Lauren Wasserman Isabella “Bella” Welch Brayden Wesley

Alexandra Weygand MawMaw Whidden Johnny Whitehead, Jr. Sky & Auggie Whitehead Whitehead Family Henry Wied Isabella Margaret Williams Matthew Williams Connor Wilson Matthew Wiseman Mark Witt & Family Austin Wright Katie Wright Emma Yarbrough Heather Young IN MEMORY OF Virginia S. Anderson Cole Andress Anthony Arnerich Angelo Asimakopoulos Baby Carmelo Lisa Bailey Dennis Banh Jason Zajicek Cynthia Zarate Alexia Barnett Martha Bauer Scott Bergkamp Jeff Berkowitz Zane Betts Trevor Binns Jerri Lynn Bitar Michael Blake Luis Enrique Martinez Bolio Liliane Bouthillier Nicole Bouvatte Jeffrey Dean Bowman Gladys & Bernie Brady Michael Brandt Stephanie Brandt David Braverman Leonard Brinker Franklyn Brodsky John Henry Brown Jennifer Buffone Brody Bullock Leah Burke Josefina Cagigal Gabrielle Cannistraci John Capocciama Andie Carpenter Sarah Cayo Brooke Chapman Aileen Cheng Raymond John Chevallier

Fred Keesy Amanda Koscis Margaret McCabe Kristl

Joyce & Leslie Picker Isaac Pina

IN HONOR OF Joseph Aach All Marfan Folks Arche Family Anthony Newell Arnerich Caroline Arpin Tammy Asplund Filip Avramovic Joe Bailey Bailey Family Amber Baker Nora Leslie Baker Caroline Bange Curtis Bates Little Bear Hunter Beckholt Ricardo Belchior Emma Biggerstaff Larry Blake Jerry Bluestein Megan Boeglin John Bois Crystal Bonnichsen Lottie Boon Elizabeth Bostwick Bonnie Bowden Dr. Juan Bowen Dr. Alan & Rebecca Braverman Gina Broadbent Sean Broadbent Allison Brobst Avery Clark Huxley Clark Dani Beth Clements Steve Collins Carrie Lynne Cook Caitlyn Cooke Michael Crabtree Christian D'Angelo Sofía María De la Garza Andrea Dia Laura Dickson Lynn Diehl Ernie Dostalik Emerson & Sam Dowdney Joe Doyle Rahel E Gabriella Earnhart Sean Elmore Celina Emanuel Ellen England Lucas Escarcega Mitra Esfandiari Mary & Bill B Essers Beth Brobst John Brown Paul PJ Burke, III Catherine Bury Kathy Butvick Ann Marie Carrier

Carolyn Powell Matthew Powell Terry Preiss Caroline Prugh Raquel Ramos Erin Ramsey Jennifer Rankins Robert Rapado Joseph Rayman Ann Reinking Regan Remulla Jonathan Reyes Lis Rock Gloria Rodriguez Andy Ross

Julie Kurnitz Gene Kutner

Darryl Langshaw Jonathan Larson Kaylana Lasell Anthony "Tony" Laughman Brian Laughman Laurel Alexa Lawrence Denise Lee Mary Lobo Ben Lorenz Margaret Eddy Lucas Ashlyn Oi Ling Luk Lucas Luna Alan Mackey Jarvis Mahe Stephanie Mahnken Harold Joshua Makanoff Richard Makanoff Frank Marin Jack Lemmer Hyson Lewis Allyson Marisch Norman Martin Albert Matsuura Erica Mayton Scout McCauley Greg McKee Connor Metz Jon Mietz Winslow Mimnagh Luis Daniel Rodriguez Montesino Haley Monts Kaitlyn Morales Ash Morales Andrew Morrell Lauren Nady Jenny Neil Matthew Nelson Joseph Neustadt Anne Newman Phil Newsome Jon Niemi Cathleen Nilles Donna Novy Rodney Oberle Cheryl Ogonowski Sharon O'Malley Lucas Osuna Team Lucas #19 Osuna Daniel Miriti Pacheco Lucy Padilla Carmelo James Pappalardo Emma Parker Christopher Paulsen

Maia Fleener Noelle Flynn Faith Frazier

Monty Labelle Tomas Lagos Brian Lane David Larrick Anthony Laughman Dr. David Liang Heidi Leben Barbara, Jonathan, & Sydney Lerman Barbara & Robert Levy Sinclair Li Jean MacLeay Eleanor Magel Lubka Talulla Maher Dr. David Majdalany Dr. Chris Malaisrie Daniel Manning Marfan Foundation Community Isabella "Bella" Marin Grant Martin Genevieve Marvin Morgan Masterman Peyton Matthews Dean Maurer John Lorenz Josh Lowrey

Kristine Freeberg Meredith Freeberg Aidan Gareis Camisha & Julian Gates Raquel Gilliland Shane Glidden Heather Gooch Julie Ann Beard Goodman Andrew "Drew" Graves Isabella Green Roberto Guerra Jennifer Guico Landon Haddad Creasie Hairston Stella Hall Christian Hampton Harper Hancock

Kaylana Lee Ryan Carolyn San Paolo Rebekah Santiago John F Sattler Jim Savage Pam Scanlon William Selvitelle, Jr. Jeremy Semanoff Michael Serbousek Ava Shaw Michael Shaw George Fulton Sheehan Laura Siqueiros Marian Joy Stoodley John Gerald Sweeney Bridget Sweet Michelle Swindle Jason Theriault Kayley Tigges Kathleen Mary Timpe Mike Tomberlin Jacques van Kimmenaede Irina Volguina Sue Wakat Robert Walker Willa Hilton Walker Dolores Warnke Dylan Watkins Karen Weil Isabella "Bella" Welch Abel Tahirkheli Fred Taverner Luke Terrell

Jane Harris Shelley & Ty Hartman Stan Henkin

Rocco Hermogenes Andrew Hillebrecht

Bob Hiltunen Morgan Hines Dave Holden Jace Holmes

Karen Maxwell Gregory McKee Bert Medina Cannon Medina Adalynn Meyers Amelia Meyers Bailey Milburn Dr. Craig Miller Franklin Miller Michael Miller Macon & Tobie Mitchell Wally Mixsell MJ Family Madeline Moore Robbie Mudroch Karen Murray Eli Neisius Katy Nelson Theresa Newton Carter Nietrzeba Eileen Novins Vivian Oehme Collin O’Nuallain Floss O'Sullivan Samantha Ott Mike Oxman Vivi P Noah Padilla Bryleigh Mon Claire Moore

Ken Horcher Elenore Horn Beckett Hotchkiss Joyce Houston Debby Howard Zack Isoma Christian & Father Jefferies Gail Jehan Cassie Jennings

Sylvia Jinks Bill Johnson Kai Johnson

Kerry Johnson Cooper Jones Joanne Jordan

Dawn Wentz Valerie Wentz Alana Wesley

Tim Joyce Seth Jung Jill Kaeppel-Sheiner Caryn Kauffman Linda Kelly Kenneth "Doc" The KIK’n Crew Gabrielle Kiliman Jaelyn Kirby

Ronald Westcott Victor Willhoite Denise Winter

Sydney Jenkins Steven Jerkins Renee Jessup Evan Jesus Brian Jeter Kyle Jorda Michael Jordan Jerrod Jung

Vivian Yang Mike Yasick Tom Yasick Yasick Family

Steve Ciccariello Courtney Collom John Connolly Peggy Coppess Elaine Coren

Brady Klefman Dawn Knowles Amanda Kocsis

Rachel Eyassu Lindsay Fabri

Sunny Pellone Josefina Piape

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