Connective Issues Winter 2026

Winter 2026

DONOR-FUNDED RESEARCH MAKES A BIG IMPACT

STIMULANT MEDICATIONS & CARDIAC PRECAUTIONS

VEDS911.COM HELPS SAVE LIVES

The Marfan Foundation is a nonprofit organization that saves and improves lives while creating community for all individuals with genetic aortic and vascular conditions, including Marfan, Loeys-Dietz, and Vascular Ehlers-Danlos syndromes. We work tirelessly to advance research, serve as a resource for families and healthcare providers, and raise public awareness so everyone with genetic aortic and vascular conditions can live their best life. CONNECTIVE ISSUES WINTER 2026 VOLUME 45 | NUMBER 1 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 O ffi cer Learn more and get involved at Marfan.org.

We exist because of you. As we begin a new year, I’m reflecting on what makes our community so special. Your generosity. Your time. Your advocacy. Your belief that everyone deserves medical answers, support, and hope. You make the work of the Marfan Foundation possible—and we are grateful. In these pages, you’ll see some great examples of the big impact you made in 2025. You’ll meet Ozzy and his family and learn more about his medical journey, including a heart transplant. You’ll read about important advances in research, such as work led by Dr. Julie De Backer and team. These discoveries don’t happen in isolation. They are fueled by our donors who believe in science, progress, and a future where better quality of life, longevity, and even cures are in reach. That same spirit of generosity shines through in community-led e ff orts like the Borracho Pescador fishing tournament, where Neil turned love for his child, Townes, into action that advances research, education, and support for families everywhere. You’ll also learn how Julian used our new VEDS911.com tool to help his wife during a medical emergency—a powerful example of how shared knowledge and the right resources can be lifesaving. We look forward to seeing you in-person and virtually during the coming year. Included is a robust calendar of upcoming events. As we begin 2026 together, remember: the generosity of our Marfan, Loeys-Dietz, VEDS, and Stickler communities drives discovery, delivers education, and builds a stronger, more connected Foundation family. From all of us at the Marfan Foundation, thank you for being here, for caring so deeply, and for helping ensure that together, we continue to Know. Connect. Thrive. With appreciation,

Michael L. Weamer, President & CEO

THE MARFAN FOUNDATION 22 MANHASSET AVENUE PORT WASHINGTON, NY 11050 516-883-8712 | 800-8-MARFAN MARFAN.ORG

ON THE COVER : Townes, who lives with Marfan syndrome, and his best buddy, Trout. “Townes’ dog Trout is always by his side, and for me, I could not be prouder of how brave and tough my son has been at such a young age all while remaining positive and happy,” said dad Neil. Learn more about Neil, Townes, and the fishing tournament that supports the Marfan Foundation on pages 6 and 7.

On-Demand ANSWERS for the Marfan Community

Introduced in the fall of 2025, the Marfan Foundation Community Companion is a new AI-powered tool designed to help people living with Marfan, Loeys-Dietz, VEDS, Stickler, and related conditions find trusted information— quickly and conversationally. The Community Companion pulls from across the Foundation’s websites and established aortopathy guidelines, allowing community members to ask real-time questions and receive immediate, easy-to understand responses. Whether searching for expert healthcare providers, learning about Foundation support groups or events, or exploring educational webinars and symposiums, the tool serves as a new entry point to reliable

“It all flowed very conversationally and made it easy to learn more.” ~Patrick McGuire

resources. Users are also guided to the Foundation’s Help & Resource Center for personalized support from nurses and bilingual sta ff . Foundation board member Andrew Toy, who lives with Loeys-Dietz syndrome and served as a volunteer advisor

during development, sees the tool as a meaningful step forward for the community.

 Andrew Toy (left) and  Patrick McGuire (above)

“New questions pop up for community members daily,” Andrew said. “A trained AI tool created specifically for our community can help enhance quality of life. I’m proud that the Foundation is among the first nonprofits to use AI in a way that delivers direct, immediate benefit.” Community member Patrick McGuire, who lives with Marfan syndrome, tested the new resource and found it intuitive and engaging. “I found the Community Companion very easy to use,” he said. “The information was very good, and it often prompted follow-up questions that helped me learn more.” The tool was developed and

or the internet at large; instead, it draws solely from Foundation content and established medical guidelines. The Companion is designed to support, not replace, medical care. The Community Companion also o ff ers multilingual capabilities, allowing users to ask questions in any language and receive responses in kind, helping expand access and advance health equity worldwide. While not intended for emergency situations or medical diagnosis, the Community Companion empowers individuals and families to better understand their conditions, prepare for conversations with healthcare providers, and connect more deeply with Foundation programs and resources—helping more people to know, connect, and thrive.

tested over several months with safeguards in place. It does not learn from conversations

Tryout the Community Companion at Marfan.org/communitycompanion Take a video tour of the Community Companion

Winter 2026 3

DONOR POWER Advancing Bold, Global Research

For researchers studying genetic aortic and vascular conditions like Marfan, Loeys-Dietz, and VEDS, the biggest breakthroughs often begin with the hardest questions that don’t currently have clear answers, established methods, or guaranteed results. That’s exactly where the Marfan Foundation comes in. Through the generosity of donors, the Foundation invests in innovative research through its grant program with the goal of changing how genetic aortic and vascular condi tions are understood, treated, and prevented. A Global Team, United by a Shared Mission The largest grant available through the Foundation is the Everest award. The 2023 recipients have received $440,000 to date and include a global research team led by Julie De Backer, MD, PhD (Belgium); Hiromi Yanagisawa, MD, PhD (Japan/United States); and Patrick Sips, PhD (Belgium). They were united by a shared goal of understanding what triggers aortic dissection before it happens. This international project brings together complemen tary expertise and perspectives. The teams communicate constantly, from frequent emails to monthly online video calls, ensuring that discoveries are shared quickly. “We bring diverse expertise and research/cultural backgrounds, so we can envision the problem through manydi ff erent eyes,” said Dr. De Backer. “Each team has complementary expertise, leading to a strong synergism in the execution of the project. It’s a reminder that when researchers collaborate across borders, progress accelerates.” Inspired by Patients, Driven by Purpose For many researchers like Dr. De Backer, their work is personal. She traces her path back to an inspiring high school biology teacher who sparked her interest in medi cine and early cardiology training where she was intrigued by rare genetic/congenital cardiovascular disease. “As a young doctor, I was touched by some of the stories and felt the need to try my best to help improve care,” she said. That connection only grew stronger through her work with the Marfan patient community in Belgium, which helped shape both her clinical and research priorities. For Dr. Yanagisawa, the motivation began with curiosity. “I was fascinated by the beauty and mystery of the human body,” she said. Over time, that curiosity evolved into a focus on the integrity of the aortic wall.

 Hiromi Yanagisawa, MD, PhD (left) and Julie De Backer, MD, PhD (right) with collaborating Everest award researcher Lynn Sakai, PhD (middle)

Finding Aortic Dissection’s Triggers At the heart of this project is one question: What trig gers an aortic dissection? Now, in their second year of Everest funding, the research team is uncovering something unexpected: the immune system may play a key role from the very beginning of aortic disease. “We now see that multiple cell types, including immune cells, known for their role in infections or autoimmune con ditions, play a significant role in the development of aortic disease in Marfan syndrome,” Dr. De Backer explained. “We need to further find out how and at what stage multiple cell interactions occur during disease development.” The team aims to better understand what triggers these pathological processes, which ultimately damage the aorta, with the goal of developing new strategies to prevent aortic dissection in patients. Guided by data from their Everest project, the team hopes to one day develop novel immunotherapy options to

“Funding through the Marfan Foundation represents a unique opportunity to drive novel research ideas forward, with the hope of creating a breakthrough in the field.” ~Dr. Julie De Backer

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prevent aortic dissection by guiding how specific immune cells behave. They also want to explore the possibility of using biomarkers to identify patients who are suitable for this type of therapy. While more research and testing are needed, this work provides critical groundwork. Why Donor-Funded Research Matters For many researchers, finding answers is hindered by limited resources and high cost. And for rare conditions like Marfan, Loeys-Dietz, and VEDS, funding at this scale is especially di ffi cult to secure. “Biomedical research is very expensive,” said Dr. De Backer. “The support from the Everest award enables us to pursue bold research avenues and test novel hypotheses with collaborators in a global setting.” For Dr. De Backer, receiving the Everest grant was both emotional and energizing. “I pinched myself several times!” she said. “It means so much for us as non-US researchers to be awarded this grant from the Marfan Foundation. Professionally, this kind of grant is invaluable and very stimulating to keep us going on our research path.” Equally important, the funding helps researchers stay connected to the community they serve. “This kind of collaboration puts me closer to the patients and motivates me to continue our research endeavor,” said Dr. Yanagisawa, who described the moment she received the news as “humbling and gratifying.”

“The grant has allowed our laboratories to join forces to pursue this new promising research avenue,” said Dr. Sips. “It is also a great recognition of our team e ff ort, and it provides a strong motivation to know that we have the support of the Foundation, which is rooted in the patient community.” That willingness to do research and discovery in a rare condition such as Marfan syndrome is because of donor support. The team credits donors and the Everest award for allowing them to gather the early evidence needed to compete for future grants, bringing promising ideas closer to real-world treatments. “The spotlight of the Everest award will bring other researchers from around the world to join us,” said Dr. De Backer. “Together, we hope to catalyze worldwide e ff orts to develop new treatments for Marfan syndrome and related conditions.”

Help fund the next medical breakthrough! Support research: Marfan.org/give.

 Patrick Sips, PhD, (right) and PhD student Maarten Dhaese, who is funded by the Everest grant

Learn more about our current and previously funded research at Marfan.org/research.

Winter 2026 5

Reels in Support for Marfan Syndrome TEXAS FISHING TOURNAMENT

 Competitors in the fly fishing division on the hunt for redfish

What began as a casual weekend of fishing among friends has grown into one of the largest and most impactful angling events in the country. The Borracho Pescador (BP) Fishing Tournament, now in its 14 th year, has evolved from about 10 friends on the Texas Coast to more than 350 anglers, a full weekend of fellowship, and an incredible $1.5 million donated to charitable causes. The Marfan Foundation was honored to be part of the BP story as one of the three charities that received funding from the 2025 tournament. “I first joined the tournament in 2016 and had such a great time and really enjoyed the group,” said Neil Turner, whose son Townes has Marfan syndrome. “It was one of those moments in life, when you look around, and think, these are really good guys. There was a positive energy that was happening and the feeling that this weekend could really become something special.” The tournament’s spirit has always been rooted in camaraderie and giving back. What started as a $20 buy-in and a Yeti cooler prize now features world-class auction items, support from outdoor brands like Yeti,

Howler Brothers, Turtlebox, and Simms, and an “over-the top” swag bag. “What has been cool to see is that these brands also attend the tournament to participate and support at the event as well,” said Neil. “It’s been very humbling to see it grow into one of the largest fishing events in the country.” Journey to a Marfan Diagnosis For the Turner family, the tournament’s generosity carries personal meaning. In 2022, an unexpected eye appointment led to a life-changing discovery. Townes had subluxated lenses, an early sign of Marfan syndrome. “My wife and I are so grateful for Townes’ eye doctor who encouraged us to get him tested,” said Neil. “During that visit, I wrote Marfan syndrome, subluxated lens, and Dr. Wang [the referred specialist] on a sticky note that I still carry in my wallet today.” That routine eye appointment turned into months of genetic testing, heart monitoring, and eventually two major

 Participants at the 2025 Borracho Pescador Fishing Tournament held in September in Port O’Connor, Texas

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eye surgeries. The family turned to the Marfan Foundation for guidance, information, and support. “The Foundation has been so supportive of just being there for us and introducing us to di ff erent people, as well as helping with a road map on this journey,” Neil said. “The information highway the Foundation provides has been a great resource for us to help answer many questions.” After Townes’ diagnosis, the family slowed down—for the better. “I think we have a newfound focus on quality family time, not sweating the small stu ff , and enjoying the little things more,” explained Neil. “This was an adjustment for our family in many ways, but mainly in attitude. We don’t see it as a negative or roadblock; we just took a turn down a di ff erent road.”

 Borracho Pescador board members hold the total funds raised during the 2025 tournament

A Surprise for the Family In 2023, the BP board surprised Neil during the tournament with a powerful announcement: 10% of all funds raised, every year moving forward, would be donated to the Marfan Foundation in Townes’ honor. “It was emotional,” Neil said. “These guys are my closest friends. To see them show up for my family like that…it meant everything.” That commitment translated into extraordinary impact. Two years in a row, BP has raised approximately $330,000 annually, meaning tens of thousands of dollars now support the Marfan Foundation’s mission to help more people Know. Connect. Thrive. “Maybe I’m exactly where I’m meant to be,” Neil said of balancing life and career, which is also in the fishing industry, with BP’s mission. “If our love of fishing can help families, support research, and raise awareness, well, that’s something special.” Looking Ahead BP organizers hope to keep expanding the tournament’s reach, raising more each year, and continuing to change lives. The Turner family also dreams of introducing more kids with Marfan syndrome to the joy of fly fishing, a shared passion that brings them together. And as for Townes? His parents’ wish is simple: “We want him to find what he is passionate about in his life and to be happy. What else could a parent ask for?” Get Involved To learn more about next year’s tournament, visit borrachopescador.org or follow @borrachopescador on Instagram. Anyone interested in spon soring, participating, or supporting the event is welcome.

 Meredith Mischner, Development Director for the Marfan Foundation, with Neil at the tournament

“I could not be more proud of how brave and tough my son has been at such a young age all while remaining positive and happy. He inspires us.” ~Neil

 Neil and Townes out on the water

Winter 2026 7

How a New Resource Helped One Family Be Heard in the ER

VEDS911.com Leads to a Shift in Care The change in care was immediate.

“While I was informing the sta ff of what VEDS is, they did not seem to care,” said Julian, who was advocating for his wife during a visit to the emergency room in Michigan. For families living with Vascular Ehlers-Danlos syndrome (VEDS) like Julian’s wife and his two sons, emergency situations come with an added layer of fear and urgency. The condition is rare, complex, and often unfamiliar to emergency department sta ff , which makes rapid, informed care critical. During this visit, a new resource from the VEDS Movement made all the di ff erence. Advocating in an Emergency The VEDS Movement recently launched VEDS911.com as a tool to help families advocate for care by instructing first responders and emergency room sta ff to immediately visit the webpage for urgent VEDS-specific treatment protocols. While in the ER, Julian noticed a lack of concern that immediately raised red flags. “Before I showed the medical sta ff VEDS911, the ER sta ff seemed to be nonchalant about the situation the information that I was giving them to properly for my wife,” he said. “I did not observe any sen urgency by the medical sta ff for getting imaging d As Julian advocated for his wife by outlining seriousness of VEDS and the specific precautio requires including careful imaging decisions an awareness of arterial risks, he felt his concerns weren’t landing. he ER n, and y care se of done.” g the ns it d

“After showing them VEDS911, the medical sta ff started to become more attentive to my wife’s medical emer gency,” Julian said. “I believe it is the reason why the sta ff changed their attentiveness and urgency to the situation.” What had felt dismissive moments earlier suddenly shifted to focused, responsive care, which is vital for families facing a VEDS emergency. “It was almost as if a reset button was pressed, and the medical sta ff took our situation seriously,” said Julian. From Julian’s perspective, the power of VEDS911.com lies in its clarity and authority. “I feel that VEDS911 collectively guides the medical sta ff in patient care treatment and emphasizes the risks of what could happen if the patient is not treated in a prompt and careful manner.”

 The Arche family: Julian, Samantha, Jordan, and James

Julian first learned about VEDS911.com through Ryan Rodarmer, director of the VEDS Movement. When it became clear that verbal explanations alone weren’t enough, Julian reached out to Ryan directly while still in the emergency room. “I reached out to Ryan for assistance, and he sent the VEDS911 literature to me while I was sitting in the ER with my wife,” Julian said. “I immediately went up to the nurse’s station and showed them the literature, and then they expedited my wife’s CT scan.”

“VEDS911 was a lifesaver for us.” ~Julian

VEDS911.com is a free emergency resource available through the VEDS Movement. Families and individuals can access it via the webpage on a cell phone or print the downloadable guide to present during emergency situations. For more information, visit VEDS911.com .

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For some people with conditions like Marfan syndrome, treating complications the aorta requires just one surgery. For others, treatment unfolds over time. Suc is the case with Brian Campbell from Cheshire, United Kingdom. Brian ultimately underwent three major aortic surgeries, each involving three Terumo Aortic grafts chosen by his healthcare team to support his individual treatment plan. Surgery #1: A Life-Changing Diagnosis “I was diagnosed with Marfan syndrome in late 2020. Unfortunately, this was after I su ff ered an aortic dissection earlier that year in May,” said Brian. At the time, Brian was a key worker during the height of COVID. He was active, fit, and assumed his body could handle anything. Within hours, that belief was shattered. Brian’s aorta dissected while at work. “After a misdiagnosis by the ambulance crew who wouldn’t take me to the hospital, my wife drove me there,” recalled Brian. “Much later in the day, I had the correct diagnosis of aortic dissection via a CT scan.” After his scan, Brian was rushed to a cardiac hospital for an emergency root replace ment and a mechanical heart valve. The surgery saved his life, but the aftermath was both mentally and physically challenging. Recovery took time, spanning over two years. “It was a roller coaster of feelings as we navigated through the hospital appointments and the knowledge of upcoming treatments and surgeries,” said Brian. Because the dissection extended from the aortic root to his iliac arteries, Brian lived with ongoing risk. It was during recovery from this first surgery that genetic testing revealed an FBN1 variant and confirmed his Marfan diagnosis. Three Aortic Surgeries: A Story of Recovery sof ch y c y

 Brian holding Terumo Aortic grafts at the Aortic Dissection Awareness Day in Leicester, Sept. 2025

Surgery #2: A Turning Point in Recovery After two years of medical management, Brian underwent his second major surgery in December 2024, a total aortic arch replacement with a frozen elephant trunk (FET). An FET combines two operations into one device: a surgical graft replacing the arch and a stent graft that extends down into the descending thoracic aorta. This time, the recovery was dramatically di ff erent. “The recovery from this surgery was unbelievably quick, and I felt almost back to normal by the end of January 2025,” Brian said. “Everyone couldn’t believe how quickly I had recovered, and we scheduled the third surgery for July 2025.” Surgery #3: Managing Pain and Recovery Brian’s third surgery, a descending thoracic aortic replacement, was per formed in August 2025. While successful, the lengthy recovery tested him in new ways including the need to manage pain. Several months later, the recovery continues, but Brian believes the outcome matters more than the discomfort. “For me, it’s all been worth it, and I would definitely never complain as I feel a lot better now with no pressure buildup in my neck and chest,” he said. “I am now still medically managed and may need further surgeries in the future, but we will deal with those if they ever arise.” Moving Forward with Marfan Syndrome Brian credits specialist aortic centers and the support of his wife as essential throughout his surgeries and recovery. Today, Brian continues to be closely monitored through imaging, medication, and follow-up care. Despite ongoing recovery, he has returned to work and physical activity. “I will have either annual CT or MRI scans, and I have regular meetings with my surgeon,” said Brian. “I walk a lot and have just completed a walking 10K. I do have to rest and realize when I’ve done too much, but mainly, I am back to my normal way of life. Mentally, I have been good as after the first operation; I feel stronger and have a very positive mental attitude.”

“My new grafts are definitely doing their jobs.”

 Brian in Dec. 2024 after his second surgery

Winter 2026 9

Supporting Children with ADHD and Genetic Aortic Conditions: What Families Need to Know

For families managing genetic aortic and vascular conditions like Marfan syndrome, Loeys-Dietz syndrome, or Vascular Ehlers-Danlos syndrome (VEDS), wellbeing decisions often require extra thought and coordination. When a child also shows signs of attention-deficit/ hyperactivity disorder (ADHD), those decisions can feel even more complex, particularly when questions arise about stimulant medications and cardiovascular safety. ADHD is common in childhood, and when left untreated, it can significantly impact learning, confidence, behavior, and social development. With careful planning, coordina tion among specialists, and consistent monitoring, children with genetic aortopathies can often be treated safely and e ff ectively for ADHD. Dr. Luciana Young, a pediatric cardiologist at Seattle Children’s Hospital and Professor of Pediatrics at the University of Washington, outlines what families should understand when navigating these overlapping conditions. To read the full resource, scan the QR code on page 11. What Are Common Signs of ADHD in Children? ADHD is defined as a persistent pattern of inattention and/or hyperactivity/impulsivity that interferes with functioning or development. Symptoms must appear before age 12, occur in more than one setting (such as home and school), and persist for at least six months. Inattention can present as di ffi culty staying focused, trouble following instructions, poor organization, losing items, forgetfulness, or appearing not to listen when spoken to directly. Hyperactivity and impulsivity may include fidgeting, di ffi culty staying seated, excessive talking, interrupting others, acting without thinking, or appearing constantly “on the go.” Diagnosis typically involves parent and teacher questionnaires like the Vanderbilt Rating Scales, along with clinical evaluation by a pediatrician or specialist. What Steps Should Parents Take if They Suspect ADHD in a Child with a Genetic Aortic Condition? If parents notice challenges with attention, impulsivity, or behavior at home or school, they should speak directly with their child’s doctor. The American Academy of Pediatrics recommends evaluating children age four and older when concerns arise. Because ADHD a ff ects much more than attention alone, early diagnosis and treatment are important. When untreated, ADHD can interfere with academic progress, peer relationships, and self-esteem. Early intervention helps children build skills, confidence, and long-term success.

 Dr. Luciana Young

What Are the Unique Concerns When Treating ADHD in Children with Genetic Aortopathies? Treating ADHD in children with genetic aortic and vascular conditions requires special consideration of cardiovascular risks. Stimulant medications—the most e ff ective treatment for ADHD—can cause small increases in heart rate and blood pressure. Even modest elevations in blood pressure can increase stress on the aorta, which is why careful monitoring and coordination among the child’s pediatrician, cardiologist, and behavioral health provider are essential. Some children with Marfan syndrome may also have heart rhythm abnormalities that warrant additional caution. What Should Families Understand About Cardiac Risks and Stimulant Medications? Stimulant medications such as methylphenidate and amphetamines are generally safe for most children, but they can cause mild increases in heart rate and blood pressure and, in rare cases, may a ff ect heart rhythm. Current guidance from the American Heart Association and the American Academy of Pediatrics advise that stimulant medications should not be automatically excluded in children with aortopathies. With cardiology approval and close monitoring, stimulants can often be used safely and may significantly improve a child’s quality of life.

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What Should Families Do Before Starting ADHD Medication? Before starting medication, families should consult the child’s cardiologist. Baseline cardiovascular imaging—already routine for genetic aortic conditions—helps guide treatment decisions. In some cases, an electrocardiogram (ECG or EKG) may also be recommended. Heart rate and blood pressure should be checked before treatment begins, after any dose change, and regularly over time. Ongoing communication among providers is critical to ensuring safe and e ff ective care. What Warning Signs Should Prompt Medical Care? Serious cardiovascular events related to ADHD medications are rare, but families should seek medical attention if a child experiences: • Rapid, pounding, or irregular heartbeat • New or worsening shortness of breath • Severe dizziness • Sudden severe chest or back pain These symptoms may signal a serious heart or vascular issue and require immediate evaluation. What Monitoring Is Recommended During ADHD Treatment? Routine monitoring is a key part of safe treatment. If heart rate or blood pressure remains consistently elevated, medication adjustments may be needed, and the cardiologist should be involved. Growth should also be tracked. Stimulant medications can a ff ect appetite, weight gain, and, to a small degree, final adult height, particularly during the first two years of treatment. Are There Additional Red Flags for Children with Marfan Syndrome, Loeys-Dietz Syndrome, orVEDS? Children with Loeys-Dietz syndrome or VEDS face higher risks of arterial complications beyond the aorta. Strict blood pressure control, regular vascular imaging, and avoidance of certain medications like some decongestants or migraine treatments are especially important. All providers involved in a child’s care should be aware of the underlying diagnosis. Download the full resource. • Chest pain or tightness • Fainting or near-fainting

Key Takeaways forFa m ilies ✓ ADHD treatment can still be an option. Children with genetic aortic and vascular conditions can often be treated safely for ADHD when care is coordinated and closely monitored. Stimulants aren’t automatically ruled out. With cardiology approval and regular follow-up, stimulant medications may be used cautiously ande ff ectively. ✓ Team care matters. Your child’s pediatrician, cardiologist, and be havioral health provider should work together on treatment decisions. ✓ Monitoring is essential. Blood pressure, heart rate, growth, and symp toms should be checked routinely—especially when starting or adjusting medication. ✓ Know when to act. Seek medical care right away for chest pain, fainting, irregular heartbeat, severe dizziness, or sudden severe chest or back pain. ✓ Options extend beyond stimulants. Non-stimulant medications, behavioral thera py, school support, and healthy routines can all play a role. ✓ Needs change over time. ADHD and cardiovascular care should be re assessed as children move into adolescence and young adulthood. ✓ You can support both focus and safety. With informed decisions and ongoing care, families don’t have to choose between man aging ADHD and protecting heart health.

This article is intended for educational purposes only and should not replace individualized medical advice. Always consult your healthcare providers regarding diagnosis and treatment decisions.

Winter 2026 11

Finding Strength inEvery Step

When Ozzy first felt the pain in his chest, he thought it was heartburn. Two hours later, his decision to go to the ER would save his life—and change it forever. “In 2000, I received an aortic valve replacement after having an aortic dissection,” Ozzy said. “When I woke up from the anesthesia, my doctor told me the dissection confirmed a suspected diagnosis of Marfan syndrome, and things would be di ff erent from then on.” The years that followed were not easy. Ozzy lived with Marfan syndrome for 25 years, navigating multiple open heart surgeries, long hospital stays, and the physical and emotional stress of a complex diagnosis. And yet, his story is one of perseverance, faith, and community. “Since being diagnosed, my life has been quite an adventure,” he said. “Yes, it’s been rough, but I’ve lived a great life. I’ve learned to live with my diagnosis and make the best of what the Lord gave me. I’ve been blessed with a beautiful family, and they give me reason to stay as healthy as I can.” Getting Connected with Community Ozzy and his family were introduced to the Marfan Foundation community in 2014 after his first son, Zayden, was born with Marfan syndrome. “My wife and I looked for care and were referred to the Marfan Clinic at Memorial Regional Hospital in Florida,” Ozzy said. “That’s where we met Dr. Roman Yusupov and his excellent team who introduced us to this amazing Marfan Foundation community.” That introduction led them to the Foundation’s Walk for Victory in Nashville, one of 24 community walk events held across the country. “What I like most about Walk for Victory is that for my family, everybody wins,” Ozzy shared. “I get to talk with others who have gone, or will go, through the same things. My wife meets other parents. My son meets kids his age living with Marfan. My other son meets siblings. Everybody benefits.” A Meeting with the Doctor Who “Saved His Life” At the 2024 Nashville Walk for Victory, Ozzy connected with the doctor whom he credits with giving him a second chance at life, Dr. Ashish S. Shah, Chair, Department of Cardiac Surgery, Vanderbilt University Medical Center. “When I came to Nashville for the first time, I was in end-stage congestive heart failure,” Ozzy explained. “I was being kept alive on continuous medication through a pump I carried with me at all times. I had been denied placement on a transplant list by every hospital in the country.” That changed when Dr. Shah agreed to evaluate Ozzy inperson.

 Ozzy and Dr. Ashish S. Shah

“My wife and I promised we would do our part if he could just give me a chance,” Ozzy said. “Dr. Shah gave me that chance. On March 3, 2025, he performed the heart transplant that saved my life.” Living Today with Gratitude and Purpose “After what has felt like a lifetime of heart problems, God has blessed me with a new heart,” he said. “I’ve been given a second chance at life, and I must do my best to stay healthy in honor of donors and those still waiting.” For Ozzy, Walk for Victory is more than a walk. It’s a reflection of everything that carried him through—the importance of listening to your body, seeking special ized care, and staying connected to a community that understands. “My advice to anyone newly diagnosed is to see all your specialists, take your medications, and lean into the Marfan Foundation,” he said. “It’s an amazing resource, and everyone involved truly cares.”

This year, Walk for Victory events across the country will once again bring together individuals and families whose lives have been touched by Marfan, Loeys-Dietz, VEDS, Stickler, and related conditions. Please join us!

Find your walk at Marfan.org/walk

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Know. Connect. Thriv ve.

in t heNewYear

A new year brings new opportunities to learn, connect with others who under stand your journey, and take steps toward living well with Marfan, Loeys-Dietz, VEDS, Stickler, or a related condition. From community walks and educational webinars to in-depth symposiums, our upcoming events are designed to provide you with trusted information, meaningful connections, and new ideas for the year ahead. We invite you to explore what’s coming up and join us as we continue to learn together, support one another, and move forward toward thriving. Note: Not listed are our many support groups o ff ered throughout the month. From grief and loss, pain management, condition-specific groups, and more, we have something for everyone. Visit Marfan.org/calendar.

FEBRUARY Marfan Awareness Month 1 ........... South Florida Walk for Victory 18 ........ Webinar: How to Read a Genetic Testing Report: A Practical Guide for Individuals and Families 20 ....... Chicago HeartWorks Gala 23 ....... Webinar: Lifecycle of the Aorta 25 ....... Webinar: Lifecycle of the Aorta Replay with Live Q&A MARCH Loeys-Dietz Awareness Month 5 .......... Webinar: Rooted & Resilient: Mindfulness Tools for LDS Advocates 8 .......... Phoenix Walk for Victory 8 .......... Paris Half Marathon: Team Victory 15 ........ Houston Walk for Victory 18 ........ A Lunch with Heart, Palm Beach 21 ........ Southern California Walk for Victory (Costa Mesa) 28 ....... Kentucky Regional Symposium: Living Better with Marfan, Loeys-Dietz, and VEDS APRIL 11 ......... Nashville Walk for Victory 12 ........ Paris Marathon: Team Victory 18 ........ Italian-Language Summit 25 ....... Tampa Walk for Victory 25 ....... North Carolina Walk for Victory (Raleigh) 30 ....... Innovators and Career Development Award Announcements MAY 3 .......... Memorable Moments Luncheon NYC 16 ........ Iowa Walk for Victory (Des Moines) 25 ....... Women’s Health Webinar: Menopause 30 ....... Northern California Walk for Victory (Palo Alto) TBD .... Philadelphia Walk for Victory The Foundation will once again host Camp Victory for kids, teens, and families this year! Registration will be open soon. ★ Camp Victory for Kids: July 5-10, GA, and July 26-31, CA ★ Camp Victory for Families: Sept. 25-27, GA, and Oct. 23-25, CA Questions? Contact Andrea at afriedman@marfan.org. 3 .......... DC Metro Walk for Victory 9 .......... Denver Walk for Victory 9 .......... New York Walk for Victory (Long Island)

View all upcoming events at Marfan.org/calendar.

Winter 2026 13

HOW ONE FAMILY FOUND PEACE OF MIND Through a Free Foundation Resource

As a new year begins, many families think about com mitments they can make to care for the people they love. For families living with Marfan, Loeys-Dietz, VEDS, and related conditions, planning ahead can be one meaningful step toward reassurance and clarity. For the Justen family, that kind of planning became an essential step toward peace of mind. When Jameson was born in November 2020, his par ents’ world changed quickly and unexpectedly. What began as time in a specialty care nursery led to transfer to a children’s hospital and, soon after, a diagnosis of early-onset (neonatal) Marfan syndrome. “We had no prior knowledge that Jameson would be born with a connective tissue disorder,” said his mother, Amanda. “The pediatrician noted classic features like long fingers and toes, a dilated aortic root, and floppy lungs. His diagnosis was confirmed by genetic testing when he was a month old.” Receiving this news during the height of the COVID-19 pandemic made an already overwhelming experience feel isolating. “We knew no one else who was in our shoes, let alone anyone who even knew what Marfan syndrome was,” Amanda said. Jameson’s cardiologist encouraged the family to connect with the Marfan Foundation for reliable infor mation and support. That recommendation became a turning point. Through the Foundation’s Help & Resource Center, Amanda connected with nurses and sta ff who answered questions and guided her to trusted resources. “There is not a word that can

virtual programs, conferences, and online support groups, including one for parents of children with early-onset Marfan syndrome. As Jameson’s parents grew more confident in navigat ing care and advocacy, they also began thinking about planning for the future in a thoughtful, intentional way. “I wanted to make sure there were clear plans in place that reflected Jameson’s needs,” Amanda said. Through a Foundation communication, Amanda learned about FreeWill, a free, easy-to-use online service o ff ered to the community to help create legally valid wills. “FreeWill made the process seem manageable,” she said. “Everything was laid out clearly, and the reminders to finalize the documents made a big di ff erence. I felt a sense of calm once it was done.”

“It was about being prepared, not fearful.” ~Amanda

adequately describe the posi tive impact the Foundation has made in my life,” she said. “I no longer feel alone on this journey. The Foundation has empowered me to be the best and loudest advocate for Jameson.” Over time, the family found meaningful connec tions through local and

Create your free, legal will today and take an important step toward planning for your family’s future. Visit FreeWill.com/Marfan .

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Marfan.org

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 August 1, 2025 – November 30, 2025. 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

INHONOROF

Beckett Hotchkiss Enid Howard Dr. Daniel Huddleston Melissa Jaynes Cooper Jones Morgan Jozwiak FredKeesy Haven Kerns Delaney Kinstner Brady Klefman Dawn Knowles SaraKyle Sabrina Lang Miyla Langshaw Corrine Lattell Sydney Lerman Barbara Levy Preston & Simon Li Sinclair Li Dr. David Liang

Evan Smolen Eleanor Stahura

Sharon Ferguson Aaron Jasper Fick Eric Fitzgerald JerryFlom John Markle Grimshaw Shawn Grunberger Wimphie Aria Gunawan

Debbie Murray Angelo Nana PaulaNeil Joseph Neustadt

All Marfan Folks Saundra Addison Christian D"Angelo Filip Avramovic Leo Azarraga Joe & Allison Bailey & Family Bill Baker Hunter Beckholt Ricardo Belchior Sebastian Brady Dr. Alan & Mrs. Rebecca Braverman Cristobal Castillo Rikki Cherry Dani Beth Clements LeoCole CyndyCox Angel Dean Mike Alex Decoursey Leora DeMarco Molly Easly Tom and Anna Ellis Evan Feenstra Ethan Fellows Skylar Kate Flewelling Henry Floyd Tami Friedman Cindy Gardner Álvaro De la Garza Sofía Maria De la Garza Flynn Gavins Wayne Geraci, Jr. BruceGold Isabella Green Landon Haddad Jordan Hannan Joel Hanneman Miriya Healing Lucy Jane Henderson Rocco Hermogenes Deborah Hirsch RileyHadt MistyHall Helen Collins Orla Connor Caitlyn Cooke Dominick Corso

Emily Strode Jody Suzanna Anne & Bruce Taubert Luke Terrell Townes Turner Laurel Ward Benjamin Weisman Jonathan & Courtney Wetzel Alexandra Weygand HenryWied Matthew Williams Whitehead Family Rita Wronkiewicz Emma Yarbrough Heather Young IN MEMORY OF Virginia S. Anderson Don Sergio Arguelles Angelo Asimakopoulos Madison Barbieri Alexia Barnett TJBarulli Scott Bergkamp Trevor Binns Stephanie Brandt Kathleen Brauer David Braverman Carol Brennan Jennifer Bu ff one Je ff Burch Saralynn "Sara" Camp Laura Cathcart SarahCayo Aileen Cheng Charles Collett Richard Coren George Covington, Jr Sherelle Daniels Robert Armin Dearworth Graham DiMartino Kurt Dolina Steve Ciccariello DeMal Coleman

Anne Newman Patricia Nicolosi Cathleen Nilles Evane Maria De Siqueira Noronha Cheryl Ogonowski Shirley Osman Lucas Osuna Daniel Miriti Pacheco

Joel Hanneman Daniel Hargrove FredHearn John Heinemann MaxHommel Tyler Howell Ryan Hubbard Jeremy Izzo Jason Jacobi Michael Jordan MaryKau ff man

Carolyn San Paolo Christopher Paulsen Lois Peek Carole Petrowsky

Josefina Piape Joseph Powell Carolyn Powell Ann Reinking Jadzia Renaud Jonathan Reyes Lisa Ritell LisRock

Robert & Robbie Keating Tomas Alexander Lagos Laurel Lambrecht Brian Christopher Lane Darryl Langshaw Alexa Lawrence Marianne Lawson Jack Lemmer Hyson Webster Lewis Bobby Little Nick Lloyd MaryLobo Steve Lonas Margaret Eddy Lucas Frank Marin Norman Martin Hooshang Mastali Albert Matsuura Erica Mayton Scout McCauley Douglas McDonald Jr Daniel Mendez Connor Metz John Monroe Luis Daniel Rodriguez Montesino Haley Montts Kaitlyn Ash Rose Morales Andrew Morrell Juliet Mowrey

Janice Lynch Georgia Mace LuluMaher

Isabella Marin Grant Martin Cheri O’Mathuna Conor & Orla O’Mathuna Karen Maxwell

Michael Rosales David Schettler Barbara Schmidt Tommy Scidmore Barbara Von Seggern AvaShaw Mike Sitzman Wilburn (Mike) Sitzman Ralph Tapphorn Victor Tavares Burke Taylor Scott Ryan Taylor Kayley Tigges Larry & John Torode SusanVeth

Haley Monts Barb Mooney Team Morales Robbie Mudroch Carole Nowak Kayla Pariser Victoria Peoples Cameron Ponton Emily Raschenbach James Richardson Amanda Rivera Dante Roque Helen Rosenberg AnnePower Matt Prunier

Irina Volguina Lily Wahsinski Dylan Watkins KarenWeil Wendy Weiss Alana Wesley Sandy Wiegand Jason Zajicek

Noa Russell JohnScura Karen Cassidy Selvaggio

Jeremy Semano ff Spencer Skrzypiec

Yolande Dyer Michael Enbar

Winter 2026 15

22 MANHASSET AVENUE PORT WASHINGTON, NY 11050

GET READY TO MAKE A DIFFERENCE!

FEBRUARY IS

MARCH IS

MARFAN AWARENESS MONTH! Know. Connect. Thrive.

LOEYS-DIETZ AWARENESS MONTH! Healing Hearts. Inspiring Hope.

Marfan.org • @TheMarfanFoundation

LoeysDietz.org • @LoeysDietz