Connective Issues Fall 2025

Fall 2025

$1.44M IN NEW RESEARCH GRANTS AWARDED

FOUNDATION WELCOMES STICKLER COMMUNITY

HIGHLIGHTS FROM 40TH CONFERENCE

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 FALL2025 VOLUME 44 | NUMBER 3 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.

I hope you enjoy the autumn 2025 editionof Connective Issues ! As I reflect on the past fiscal year and the amazing experience of the Foundation’s 40 th Conference, we have much to celebrate. Our community shined, our volunteer-sta ff partnerships continued to soar, and collectively we empowered people everywhere with the tools and support to live their best lives. Nearly 700 people registered for our 40 th Conference, and we were proud to o ff er 180 scholarships, which was the highest number of any time in our history. Read more about Conference and the Health Fair in this issue.

Our supporters powered the Foundation in bold new ways, and I am very pleased that for the first time ever we reached a high of 82 cents of every dollar donated going directly to fuel our mission. This is far above the sector standard of 70 cents and speaks to the financial stewardship of the Foundation. Likewise, we are proud of our new look and feel. I hope you enjoy our brand refresh, updated mission statement and vision, and new tagline: Know. Connect. Thrive. These changes are all about you – we’re here for you not just in terms of powering essential research and medical treatment, but also to provide you with resources and build community so that you can thrive in the ways that matter most to you. Other highlights in this edition of Connective Issues include: • Welcoming new members to our Board and PAB and fostering the volunteer-sta ff partnerships that drive all we do • The latest on our game-changing research grants • Learning more about Stickler syndrome • A visit to Terumo Aortic • Your impact through Camp Victory • A look-ahead to our Spanish-Language Summit in January We have many in-person events coming up around the country and in several corners of the world. To find events near you, visit Marfan.org/ calendar. Wishing you good health and happiness.

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: The many faces of our community! Leading up to and during our 40 th Conference, community members submitted their photo or had it taken while at Conference, resulting in this beautiful mosaic. Though each of us is unique, we are united by being a part of the same community.

Introducing Our Refreshed Brand: Know. Connect. Thrive.

The Marfan Foundation is thrilled to share a refreshed brand that more deeply reflects our values and celebrates our community members as individuals empowered to act in positive ways toward optimal quality of life and longevity. After more than a year of thoughtful input from volunteers, community members, sta ff —and with approval from our Board of Directors—we unveiled an updated mission, vision, tagline, and visual identity first informally at Conference and then formally early this fall. The Foundation’s Chief Communications and Marketing O ffi cer April Dawn Shinske worked closely with our longtime graphic designer who

the services and resources the Foundation provides for education, a sense of belonging, and to live the best life possible. We believe each individual defines what it means to uniquely “thrive.” Our focus is on empowerment and quality of life, and our new brand voice better represents who we are today. A Fresh Look To create a greater sense of unity and inclusiveness among divisions, the new Foundation logo wording is now all in red. In addition, our division logos now clearly link our

Marfan Foundation umbrella brand to our condition-spe cific work with added text, helping the public quickly understand who we are and who we serve. The added col or spectrum bars reinforce the unity among divisions. Our purple is now a brighter hue, aswell. “One major goal of the refresh was to help the general

understands the unique needs of our community to create a modern design that captures our cohesiveness, while staying true to our identity. The brand was last refreshed a decade ago. “We embarked on this brand refresh by first listening to our community, gathering feedback, assessing comment trends in the digital space,

public and media more quickly and easily understand the work we do on behalf of the genetic aortic community, strengthening and scaling up the ways we are able to build awareness among both medical professionals and laypeople alike,” said April Dawn. Strengthening Global Connections As part of this refresh, the GenTAC Alliance is now the Genetic Aortic Network, a division of the Foundation that convenes global scientists and fosters collaborations to advance treatments and outcomes worldwide. An updated logo now features a globe, reinforcing the Network’s “This refreshed brand reflects the voices of our com munity,” said Michael Weamer, President and CEO. “It cap tures the spirit of resilience, the drive for progress, and the commitment to ensuring that every person with a genetic aortic or vascular condition has the opportunity not just to live longer, but to thrive.” international focus and reach. Moving Forward Together

and ultimately working to ensure our mission was being expressed in ways that foster empowerment and belonging,” said April Dawn. “We are grateful to our Board of Directors Chair, Bert Medina, our leadership volunteers, and our community at-large for making this update possible. We are excited to enable more people to Know. Connect. Thrive. every day!” Our Updated Mission and Vision Our mission now emphasizes not only research, education, and support, but also the importance of building community to improve outcomes, save lives, and empower all people living with Marfan, Loeys-Dietz, VEDS, and related genetic aortic and vascular conditions. Our vision is bold and clear: Quality of life, longevity, and cures for all people with genetic aortic and vascular conditions. A Tagline That Speaks to Everyone Our new tagline, Know. Connect. Thrive., reflects what it means to be part of this community and highlights

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Foundation Funds 1.44 MILLION IN RESEARCH The Foundation has awarded seven promising new research grants totaling $1,440,000

Thanks to the generosity of our supporters, these grants include two, one-year Everest Awards and two-year grants including one Innovator, two Career Development, and two Victor McKusick awards.

 Bharath Ambale-Venkatesh, PhD – Johns Hopkins University Aortic shape and biomechanical properties as prognostic indicators in patients with Loeys-Dietz syndrome $100,000 2-Year Innovators Award This project aims to identify a better way for healthcare professionals to predict aneurysms and spontaneous dissections in people with LDS using digital twins, or virtual models of individuals’ aortas created with real-time data from imaging and other tests. The study team will gather extensive data about the aortas of 40 individuals with different types of LDS and create digital twins of their aortas. This will allow researchers to watch the shape and behavior of aortas as they change over time and train software to better predict aneurysm formation in people with LDS.  Alexander Bashore, PhD – Icahn School of Medicine at Mount Sinai Multiomic identification of novel biomarkers and cellular pathways in thoracic aortic aneurysms

“I am honored to receive a Marfan Foundation Career Development Award and grateful to the donors who make it possible. This support allows us to investigate how aortic aneurysms develop in Marfan syndrome and related conditions and to identify pathways that could be targeted with new therapies. Our ultimate goal is to turn these discoveries into better outcomes for patients.” ~Dr. Alexander Bashore

$100,000 2-Year Career Development Award Dr. Bashore’s team seeks to better understand why thoracic aortic aneurysms (TAAs) form and progress by analyzing blood and tissue samples using advanced molecular techniques. They will study growth factors, blood proteins linked to aneurysm severity, and examine how they drive TAA progression. Samples will be collected from individuals with Marfan syndrome, LDS, VEDS,

TAAs of unknown cause, and healthy volunteers to identify both shared and unique molecular signals. The goal of the project is to discover new biomarkers to better predict who is at risk for severe aneurysms and to clarify the biological processes driving disease progression. This knowledge could lead to improved diagnostic tools and more effective, targeted therapies to prevent life-threatening TAA complications.

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Our new Research Grant awardees are blazing new pathways to understand and to help individuals with Marfan syndrome. We are excited by the advanced technologies that both our new Everest Award Grantee, Dr. Michael Fischbein, and our new Career Development Awardee, Dr. Alexander Bashore, are using to identify specific genes and proteins that drive aneurysm progression and may someday predict why di ff erent individuals in the same family have di ff erent clinical problems. Our new Victor McKusick Fellow, Dr. Matthew Duda, will also focus on why Marfan syndrome patterns candi ff er between men and women. In parallel, our Innovator Awardee, Dr. Bharath Ambale-Venkatesh, will be leading a team to develop virtual models of aortas to use modern computing algorithms to predict aneurysm formation and progression. Together, these approaches will lead to strategies to identify those patients who are at the highest risk of aneurysm rupture and dissection and suggest new treatment strategies to help them live long and healthy lives.

 Matthew Duda, MD – Stanford University Fibroblast Klf4 expression attenuates sex-specific aortic root aneurysm formation in a murine model of Marfan syndrome $150,000 2-Year Victor McKusick Fellowship This project will help researchers better understand the molecular processes that allow aneurysms to form in people with Marfan syndrome, including why men and womenarea ff ecteddi ff erently. The study team will first investigate how deleting a specific gene in fibroblasts, which is a major cell type responsible for generating connective tissue, changes the structure and function

of the aortas of mice engineered to have Marfan syndrome. Next, they will study how treating the Marfan mice with hormones changes their aortas. These findings could lead to identifying targets for precision therapies that can treat Marfan syndrome without surgery.

 Michael Fischbein, MD, PhD Stanford University

Multiomic characterization of inherited aortopathies $220,000 1-Year Everest Award (with the potential for $880,000 over four years) To create new and more e ff ective treatments for Marfan syndrome and LDS, the underlying biological causes of these conditions in people must be understood. The current lack of insight in this space is a significant hurdle for research. To tackle this problem, the study team proposes using advanced sequencing technologies to

analyze both healthy and diseased tissue samples from individuals with Marfan syndrome and LDS who have undergone surgery. By studying these tissues, researchers hope to gain insight into the exact cellular changes that contribute to disease progression. The team will also collect blood samples from patients and use similar techniques to identify signals in the blood that relate to the progression of the disease.

 Bart Loeys, MD, PhD – University of Antwerp The high need for a rigorous multi-lab pre-clinical study protocol and platform to combat aortopathy in Marfan syndrome $220,000 1-Year Everest Award (with the potential for $880,000 over four years) Less than 5% of early-stage pre-clinical studies advance to human trials, largely due to inconsistent and non standardized methods, especially in animal trials. This challenge is present in Marfan syndrome research, where mouse studies often yield conflicting results across

labs. Through this project, Dr. Loeys and his team aim to create a standardized, rigorously defined study protocol for Marfan syndrome research. This includes uniform approaches for selecting mouse models, determining dosages, preparing drugs, and analyzing outcomes. The protocol will be tested across multiple labs, followed by evaluation of a small set of the most promising drugs targeting well understood biological pathways in Marfan syndrome. By applying standardized methods, researchers can better identify the most viable drug candidates for human trials. CONT INUED

Craig T. Basson, MD, PhD, Scientific Advisory Board Chair

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 Louis Saddic, MD, PhD – UCLA Estrogen mitigates thoracic aneurysm development through a shift in macrophage identity $100,000 2-Year Career Development Award Research has shown that women tend to have less extreme forms of Marfan syndrome than men, a di ff erence thought to be linked to estrogen’s protective e ff ects. Estrogen may reduce vessel damage by blocking inflammation that weakens and enlarges vessel walls. Dr. Saddic’s team will study how estrogen influences macrophages, immune cells that can either drive or resolve inflammation, using a Marfan mouse model. They will test whether estrogen increases protective macrophages and whether adding these cells directly produces similar benefits. The team will also examine how macrophages signal to muscle cells in vessel walls, with the goal of strengthening these walls and lowering the risk of enlargement and tearing.

“As a scientist who studies Marfan syndrome from PhD to postdoctoral training, I am deeply humbled and honored to receive the prestigious Victor McKusick postdoctoral fellowship from the Marfan Foundation. The dedicated work of many brilliant scientists and the generous support from the patient community have drastically advanced our understanding of Marfan syndrome progress over the last few decades. Building on their contribution, my recent finding uncovered a novel metabolic contribution to Marfan aneurysm progression. With the support of the Victor McKusick fellowship, this finding could shed new light on novel and feasible therapeutic intervention in the future, as metabolic pathways can often be targeted with small molecules.” ~Dr. Rong-Mo Zhang

 Rong-Mo Zhang, PhD – Yale University Fibrillin-1-induced glucose metabolism maintains smooth muscle contractility and aortic homeostasis $100,000 2-Year Victor McKusick Fellowship

The goal of this study is to determine if the presence of a molecule that limits cells’ ability to consume sugar is the reason why the artery wall in people with Marfan syndrome doesn’t contract as easily as it should, leading to aneurysm development. Researchers will study if reducing the level of that molecule and allowing cells to consume more sugar and contract more strongly stabilizes the aorta. If successful, this work may inform future drug development.

Marfan.org/impact

Help fund the next potential breakthrough! Give now to our Research & Education Campaign. To learn more about our Research Grant Program, including funded grants, visit Marfan.org/research .

Events Upcoming October 26 .........St. Louis Walk for Victory November 2 .......Team Victory: NYC Marathon November 11 .......UnCorked NYC November 14 ......Houston HeartWorks December 2 ......Giving Tuesday January21 ...........Webinar: Hearing Issues in Stickler Syndrome January24 ..........Fifth Annual Virtual Spanish-Language Summit January26 ..........Deadline for McKusick Fellowship Applications Ongoing Support Groups –weo ff er a variety of monthly support groups. There is no obligation – just pick the one right for your and join us to try it out at Marfan.org/virtual-support-groups .

Marfan.org/calendar

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Awards At the40 th Conference, the Foundation honored several dedicated community members who have made significant contributions of time and resources and have played a vital role in furthering our mission. We extend our heartfelt congratulations once again and remain grateful for their continued support.

Read about the 40 th Conference

Hosted in association with Children’s Healthcare of Atlanta and Emory Healthcare, the conference welcomed 681 registrants, including 130 children and teens who took part in age-based programming. About half of the participants were first-time attendees who came from 44 states and 10 countries, including Canada, Chile, Costa Rica, Germany, Mexico, Pakistan, South Africa, Switzerland, and the United Kingdom. Attendee Condition Connections 42% ................... Marfan HIGHLIGHTS

23% ................... LDS 13% .................... VEDS 22% ................... Other condition or not specified Health Fair at Conference 251 ..................... Multidisciplinary Health Fair Appointments

Ultimate Impact Award Steve Beckholt and Aven McBride

30 ...................... Healthcare Professionals 23 ...................... Healthcare Observers 66 ...................... Health Fair Participants Top Reasons for Attending 1. Connect with other a ff ected individuals 2. Have direct contact with medical professionals

LDS Heart of Gold Award Julie Wilson (center) - presented by Foundation President & CEO Michael Weamer and Gretchen MacCarrick, MS, CGC

3. Learn more about living with a genetic aortic and vascular condition Conference Results: Of those surveyed, 98% of respondents rated the Conference excellent with 99% likely to participate in a future

Foundation program or event. • 98% learned something new

• 91% made new connections/friends • 85% feel empowered to take action • 93% feel better about their or a family member’s situation A Special Thank You to

Cathy Bowen VEDS “Charging Forward” Award Sofia de La Garza – pictured with husband Alvaro and daughter Sofia Maria

And our exhibitors: Aortic Hope CLARITY Registry The Ehlers-Danlos Society The John Ritter Foundation for Aortic Health Montalcino Aortic Consortium (MAC) University of Calgary FaceBase Study/Hallgrimsson Lab The Foundation will host a global virtual conference in 2026 followed by an in-person conference in Northern California in 2027.

Making Memories Award Photographer Tim Joyce (right) – presented by the Foundation’s Chief Global and Business Development O ffi cer Eileen Novins and President & CEO Michael Weamer

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Health Fa ir Provides Needed Assessment and Care A highlight of the 40 th Conference was the Health Fair, o ff ered at no additional cost to 66 attendees. Hosted by Children’s Healthcare of Atlanta and Emory Healthcare, the two

day event provided vital access to medical services for community members – many of whom experience barriers to quality care close to home. On the first day, participants underwent screenings such as echocardiograms, eye exams, and lung function tests. The following day, they received comprehensive evaluations from more than 30 medical professionals. “It was an honor and privilege for Children’s Healthcare of Atlanta and

 L to R: Dr. Chetana Reddy, Dr. Ron Lacro, and Dr. Stephanie Wechsler  Dr. Glen Iannucci

“Bringing together medical experts from across the country who generously volunteered their time to help those with connective tissue conditions reflects the very best of medicine - collaboration, compassion, and a shared commitment to improving lives.”

Emory to support the 40 th Conference and host the Health Fair,” said Dr. Glen Iannucci, director of the Children’s Aorta and Vascular Program.

Chris Underwood –Virginia For Chris Underwood, who has VEDS, this was his second Conference but first time attending the Health Fair. He came seeking the research and practical tools to help him manage his condition and “live his best life.” Chris wanted reassurance from leading VEDS experts that his care plan was on track. “I wanted to confirm that my current status is what I am being told, and that the care protocols are adequate for me,” he explained. He also hoped to bring home new information to his local medical team to best advocate for himself. “The Health Fair was pretty amazing. I learned many things I didn’t know!” Chris said. “Some of it was to be expected, like updates on new research, but other information was specific to my situation. I also learned a new fact about exercise and use of the Rate of Perceived Exertion chart to obtain an optimal workout.” Chris left Conference “feeling more empowered to manage my condition and continue my GOAL of Get Out and Live!” “Get Out and Live!”

 At the Health Fair, Chris was able to receive an echocardiogram as well as cardiac, vascular, and dental consultations. Pictured above with Dr. Mitali Patel and below with Dr. Alan Braverman

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Javiera González Arenas – Santiago, Chile (translated from Spanish)

Javiera travelled from Chile with her 15-year-old son Tomás who was diagnosed with Loeys-Dietz syndrome two years ago. She came to Conference seeking answers she could not easily find at home. “In my country, not much is known about this condition,” she said. “It is very difficult to find answers, so what better place than one filled with specialists and people committed to knowing and researching this and other similar conditions. Receiving answers from people who know and have years of experience is a tremendous gift.” At the Health Fair, Javiera and Tomás met with medical experts who provided new information they had not been able to access in Chile. “Thanks to the doctors, we discovered something new about my son that we didn’t get answers for in our country,” said Javiera. “With this knowledge, we can prevent other issues in the future. I also learned to live and accept this condition from a di ff erent perspective; this experience transformed my life. Our lives.”

 Tomás had an echocardiogram and consults with cardiology, genetics, and opthalmology. Pictured with Dr. Irene Maumenee

Jaime Nurrenbern, PT, DPT, LAT, ATC – Indiana Marking her first Conference, Jaime attended the Health Fair to seek help for complications she had been experiencing over the past three years while living with Loeys-Dietz syndrome. She hoped to find guidance from providers who understood her condition and couldo ff er new options for care. “This was a great opportunity to seek advice from medical professionals knowledgeable about LDS,” said Jaime. “Too often, I hear from providers that they’ve never heard of LDS or that they only remember reading about it in a textbook.” At the Health Fair, Jaime underwent an echocardiogram and met with specialists in cardiology, genetics, and vascular surgery. “Talking with the providers opened my eyes to new treatment options that I could bring back to my medical team,” she said. “It was so valuable to connect with experts who treat many patients with genetic aortic conditions. Now I have a trusted provider I can contact if my medical team has any questions, and I feel more confident managing my symptoms and treatments.”

“I would absolutely encourage others to apply to attend a future Health Fair at Conference. I was able to see experts in the field, and they opened my eyes to other beneficial treatment options that are safe for me.” ~Jaime

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Stickler Syndrome: A New Chapter of Connection, Support, and Resources

Before Lissa Elkins and her husband welcomed twins in 2019, their life was busy but “ordinary,” juggling kids’ activities, school, playdates, and work while managing a blended family and small business in Tennessee. “The day Leo was born, everything changed,” said Lissa. “While one twin was healthy, the other couldn’t breathe lying on his back or latch to eat. A malformed jaw caused his tongue to block his airway, and he was born with both a hard and soft cleft palate.” At just two weeks old, Leo, the only boy in the family, underwent jaw distraction surgery so he could breathe and eat, with a palate repair to follow. With no family history of similar issues, his medical team referred Leo to a geneticist. Based on his craniofacial di ff erences and early signs of hearing and vision loss, Stickler syndrome was suspected and later confirmed through testing. “This news was a complete blow at the time,” she said. “This syndrome was not hereditary for us. So, I just dove right into the only thing I could control at that time: researching relentlessly and getting him every possible support. ‘Mama lion mode’ was activated!” Despite her research, Lissa wasn’t prepared for the progressive nature of Stickler and the multitude of challenges that have a ff ected Leo’s airway, palate, hearing, vision, joints, growth, and development. “Each stage brings a new specialist, new information to absorb, and new decisions that carry

 The Elkins family: Leo with parents, Lissa and Taka, and sisters

real consequences for his health and future,” Lissa explained. “The hardest part is that no one

hands you an instruction manual on what to do. Each decision has lifelong implications, and it’s overwhelming, exhausting, and at times terrifying.” On top of caring for Leo, Lissa was also balancing the needs of her other four children. The isolation she felt was profound, not having met other local families living with Stickler. Social media became her lifeline, helping her connect with families worldwide. She also participated in many online seminars on connective tissue conditions, which led her to connect with the Foundation. “Before Leo, I didn’t have anyone in my life with a syndrome or special need. Now I see so clearly the value in our di ff erences. Behind all the medical visits and challenges is simply a little boy who wants to play, laugh, and be loved just like any other kid. He has to work so much harder at the things most people take for granted, and yet he does it with the biggest smile on his face.” ~Lissa

 Baby Leo with twin sister Noa

Marfan Foundation Welcomes Stickler Community

This year, the Marfan Foundation expand ed its mission by adding educational pro gramming and support services for people living with Stickler syndrome - a milestone made possible through an agreement with Stickler Involved People, the nonprofit that served the Stickler community prior to sun setting their organization. Stickler syndrome is a genetic condition that a ff ects collagen throughout the body. Because collagen is a key component of connective tissue like bone, skin, and cartilage, Stickler syndrome is primarily characterized by problems with vision, joints, and hearing. Like Marfan syndrome, Stickler is an auto somal dominant genetic condition, meaning it can a ff ect both males or females (auto somal) and that its traits will appear if the a ff ected parent passes on the gene (domi nant). Stickler syndrome is also a progressive condition, so symptoms typically worsen with age. People with Stickler syndrome face ongoing challenges of living with a lifelong condition, including fatigue, pain, and other complications that can significantly a ff ect their quality of life.

 Leo, who wears hearing aids, undergoes routine testing

“The Marfan Foundation’s invitation to include Stickler families was incredibly meaningful and generous, and I jumped at the chance to finally meet other families impacted by Stickler,” Lissa said. With the hope of learning more and meeting others face-to-face, Lissa and her family attended the Foundation’s 40 th Conference this summer in Atlanta. “The entire conference, the people, the presentations, the kids’ program, even the family party, was so thoughtfully planned and beneficial for all of us,” she said. “But more than anything, it was the ability to truly CONNECT that made the biggest impact. I left the weekend feeling energized and part of an incredible community - I needed that so much!”

Get Involved in Stickler ✓ Sign up for a Walk for Victory near you at Marfan.org/walk ✓ Watch videos from our Stickler playlist on our YouTube channel @TheMarfanFoundation ✓ Subscribe to our emails at Marfan.org/subscribe ✓ Join our monthly Stickler support groupat Marfan.org/stickler-connect

 Leo at the Foundation’s 40 th Conference in July

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Welcome New and Returning Volunteer Leaders Professional Advisory Board

The Foundation is pleased to welcome several new and returning members to our Professional Advisory Board and Board of Directors. These leaders bring a wide range of medical and lived experience and commitment to advancing our mission. Their guidance will help strengthen our programs, expand our reach, and ensure we continue providing vital resources to support individuals and families living with Marfan, Loeys-Dietz, VEDS, and related conditions. View the Foundation leadership making an impact at Marfan.org/team .

James H. Black, III, MD Professor of Surgery, Johns Hopkins Medicine

Ismail EI-Hamamsy, MD, PhD Professor of Surgery, Mount Sinai Health System

Anthony Guerrerio, MD, PhD Associate Professor of Pediatrics, Johns Hopkins Medicine

Pamela Guerrerio, MD, PhD Chief, Laboratory of Allergic Diseases, Chief, Food Allergy

Research Section, National Institute of Allergy and Infectious Diseases

Board of Directors & Advisors

“The Marfan Foundation is fortunate to have a dedicated group of physicians serving on its Professional Advisory Board and a passionate and mission-oriented Board of Directors. We are thrilled to have these new members join our volunteer leadership groups. Our community is blessed to have them.” ~Board Chair Bert Medina

Karen Murray Board Member

Alix McLean Jennings Board Member

Sofia De la Garza Board Advisor

Loeys-Dietz Syndrome Foundation Welcomes New Steering Committee Members LDSF Steering Committee members provide strategic guidance, community representation, awareness and outreach, and fundraising support. View all LDSF leadership LoeysDietz.org/about-ldsf .

Diane Rich, PT, DPT

Kathleen Dreissen

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Creating Life-Saving Devices: Supporting the Genetic Aortic Community D i

Terumo Aortic, a global medical device company, invit ed Eileen Novins, the Foundation’s Chief Global Business Development O ffi cer, to tour its Glasgow, Scotland, man ufacturing facility in June, prior to the Edinburgh Aortic Summit. The company develops grafts and stent-grafts used in the treatment of people living with Marfan, Lo eys-Dietz, VEDS, and related conditions. During the visit, Eileen had an opportunity to meet Terumo Aortic’s Chief Executive O ffi cer, Erik Pomp, and Chief Commercial O ffi cer, Tarik Pacuka, and observe firsthand the multi-step process of how the grafts are made. “Visiting the Glasgow facility gave me a unique oppor tunity to learn the process of making grafts, from creating the materials to shipping them out; it was fascinating,” said Eileen. “I appreciate the company’s e ff orts to advance sci ence and improve quality of life and longevity for people living with genetic aortic and vascular conditions.” Previously, Eileen participated in Terumo Aortic’s annual Patient Day event at its facility in Sunrise, Florida, where she shared with employees how their work impacts people with Marfan, Loeys-Dietz, and VEDS. Terumo Aortic has supported several Foundation events, including the 2025 South Florida Walk for Victory and the 2024 International Symposium in London. The company has committed to being a global sponsor for four key international Foundation events in 2026.

 Erik Pomp, CEO, Terumo Aortic; Victoria Hilton, Marfan Trust, UK; Eileen Novins; Tarik Pacuka, Chief Commercial Officer, Terumo Aortic

Fifth Annual Spanish-Language Summit Information and Support on Marfan, Loeys-Dietz, VEDS, and Related Conditions

Once again, the Foundation along with our Global Champion Sponsor, Terumo Aortic, will host this free virtual educational day for the Spanish speaking community on Saturday, January 24, 2026 . Medical experts will discuss a variety of topics, including access to care. Watch for details and registration coming soon at Marfan.org/CumbreEspanol .

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Arlo

Camp Victory Making Friends for Life

“My son thoroughly enjoyed his first time at camp,” said Vicci from the UK whose 11-year-old son attended Camp Victory for Kids in California. “As soon as we picked him up, Logan said he wanted to go back. He has made some real friends for life.” This summer, the Marfan Foundation’s two Camp Victory for Kids programs in Georgia

“We love Camp Victory! It really is such an invaluable experience for our 16-year-old daughter to not be the only kid requiring accommodations,” said mom Sarah from Ohio. “Arlo has a great support network at home, but there’s nothing like being around other kids with the same challenges. It’s a great week for her to just feel like a ‘normal’ kid.” Each camp was filled with adventure and discovery: campers enjoyed activi ties like hiking, archery, swimming, arts & crafts, ziplining, horseback riding, axe throwing, rock wall climbing, boating, fishing, and scavenger hunts. Evenings were just as lively with a night nature experience, karaoke, and board games, a campfire with s’mores, trivia night, a talent show, and a dance party. “Camp Victory is so much more than the fun activities,” said Andrea Friedman, MSW, director of community programs for the Foundation. “It’s about the friendships made with others who truly get it, meeting counselors who are role models for living with a connective tissue condition, and challenging oneself to go outside one’s comfort zone. To truly understand the magic of Camp Victory, you need to experience it for yourself.” The Foundation also held Camp Victory for Families in G ia and California this fall. nformation on 2026 camps or to volunteer to be elor, please reach out to afriedman@marfan.org. ia r in nse Georg For a coun

and California brought together children and teens for a week of fun, friendship, and empowerment. Georgia set a new attendance record with 30 campers, while California welcomed 23 partici pants for another memorable season of camp. For the first time, international campers also joined from the United Kingdom and Chile. “We were worried as we are not from America, but we need not have worried,” Vicci said. “Our son was in really safe hands, well cared for and looked after. I wouldn’t hesitate to send him again.”

Logan

These life-changing camps are made possible thanks to the generosity of donors and Foundation supporters, who ensure that every child has the opportunity to participate in a safe, supportive, and enriching environment. Dedicated volunteer counselors, medical volunteers, and Foundation staff were on hand throughout each week to provide i i id d supervision, guidance, and care.

Want to help make camp a reality for kids and teens in our community? Help fund a camper! Donate today at Marfan.org/give (please write Camp Victory in the note section). Thank you!

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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 April 1, 2025 – July 31, 2025. These donations support our programs and services that help create a brighter future for people living with genetic aortic and vascular conditions, including Marfan, Loeys-Dietz, and VEDS. 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 All Marfan Folks Irish Aiden Cameron Allen Angelo Asimakopoulos John Avendano Filip Avramovic Leo Azarraga Allison Bailey NoraBaker Erica Baldwin Andrew Bates Ricardo Belchior Adrianne Knowledge-Bey Mark Biegert JackBish Christopher Blum Rachel Bowen KyloBrack Sean Broadbent James Brodsky Joseph Buckley Maggie Buckley Laurel Burke Huxley Clark Dani Beth Clements LeoCole John Connolly Caitlyn Cooke Eric Cooper & Family Heather Cottier Vilneide Covello Charlie Cowden Robert Dallas Christian D’Angelo Oliver Bowra-Davis John Deblecourt Disc Chaineys Golf League Hannah Dixon Haley Dostalik Emerson Dowdney “Chicago” Joe Doyle TomEllis Dane Everhart Marsha Faggen Victoria Falcone Pawar Matt Farace Tyler Farley Evan Feenstra Aaron Jasper Fick Maia Fleener

Flynn’s Friends Catherine Foscaldo Kolton Franks ¹ Sofia De la Garza Sofía María De la Garza Flynn Gavins Laurel (Giacone) Striker

Shawn Grunberger Brian Hancock Michael Henter MaxHommel Ross & Kathleen Hooker David Hufnagle Olasupo Fowowe, II Janice Infalt J. Mike Ireton Christopher Jedda Courtney Whitmore Jensen John Dennis Johns Bill Johnson Michael Jordan Jon JPN22 Jackie Justice William Edgar Kelly Haven Kerns Paula Knight Margaret McCabe Kristl Laurel Lambrecht Alexa Lawrence Jack Lemmer Marilyn Browdy Leonard Nancy Ellen Lepping Charles Lincoln Dennis Lithén Glenn Litton MaryLobo Margaret Eddy Lucas Stephanie Mahnken Frank Marin

MarthoAmo Virginia S. Anderson Angelo Asimakopoulos Madison "Birdie" Rose Barbieri Brittany Beallis Scott Bergkamp Bonnie (Bigheart) Biggart Trevor Binns JackBlack Jennifer Bodnar Rachel Bowen William Bowling Stephanie Braconnier Edward Brenner Rebel Bryant Jennnifer Bu ff one Brody Bullock Parker Burleson Mary Carter Richard Casale SarahCayo Aileen Cheng Stephen Rosario Ciccariello Marjorie Clark G. William Condran Nancy Conger John M. Conolly Richard Coren Heather Cottier George Covington, Jr. David Dichek Graham DiMartino Martin Dusserre Michael Enbar Dane Everhart Marsha Faggen BenFaust William Feinstein Aaron Jasper Fick Eric Fitzgerald Angela Fleagle Grace Friend Melodie K. Friesen Brandon Gaona Cheryll Gasner RandyGri ffi th Loretta Grotefend Paul East Jay Elliott Yvonne Fink Eric Fischer

Eleanor Magel Lubka Patrick Maguire

Genesis & Brennen Saele Salm Family Gabrielle Rozenberg Samuels Dennis & Mary Sandelski MazzySass Rhett Seaberg Karen Cassidy Selvaggio Spencer Skrzypiec Michelle Smith Sponseller Striders Paul Sponseller, MD Philip Storace SamStout Chris Stuart Brooks Stukey Nicolas Swanson Charlie Sweeney TeamMaia Darryl Teruya NickTeune Those I Love Miguel Velasquez Irish Wanser Dylan Watkins Michael Weamer David Weston Jonathan Wetzel Spencer Wetzel Alexandra Weygand HenryWied Whitehead Family Greta Williams Matthew Williams Lisa Wilsbacher, MD Connor Wilson Faith Wobbe Sam Woodhouse Isla Wright Wyatt Wright Joy, Adriana, & Giani Xhudo MJYang Emma Yarbrough Jennifer Yasick & Family

Cathleen "Casey" Nilles Cheryl Ogonowski Lucas Osuna Daniel Miriti Pacheco Asaka Watanabe Park JoeParr Shobhna Patel Christopher Paulsen Ron Paulsrud Josefina Piape Carolyn Powell Anthony Rampulla Gri ffi thRandy Jennifer Rankins Michael Reading Ann Reinking Jonathan Reyes David Ricca Melissa “Lis” Rock Brooke Roth Kaylana Lee Ryan AvaShaw Jill Kaeppel-Sheiner MetaSmith Libby Sparks April Blue Starlight Nancy Marie Stelfox Victor Tavares, Jr. Burke Taylor

Talulla "Lulu" Maher Stephanie Mahnken Isabella Marin Grant Martin Rachel Martin Noah Masrur Aimee Mastrangelo Matthews Family Greyson Matthews Karen Maxwell Thomas McDowell Ron Lacro, MD Bridget Porter Metz Lucie Morehead Brandon Morgan Claire Morris Robbie Mudroch Mary Anne Muriello Karen & Michael Murray Nupoor Narula, MD Theresa Newton Fiona Neylon Abi Nielsen Torsten Nordstrom Carole Nowak KurtOlson Lucas Osuna Will Oxman Noah Padilla Daniel Papke KyungPark Violet Pekarek Precy Piape Andrew Plavetzky Adalynn Meyers Katherine Mills Macon & Tobie Mitchell Haley Monts

Isabella Green Scott Griebel GraceGri ffi th RandyGri ffi th Kingston H. Landon Haddad Harper Hancock Cli ff Hardesty Libby Harper Richard

Hawkingberry Lucy Henderson Beckett Hotchkiss Brian, Noah, & Katelyn Howell William Henry Floyd IV Sydney Jenkins Alix & Ezra Jennings Cassie Jennings Sylvia Mae Jinks Cooper Jones Justen Family LiaKaplan CarynKau ff man BenKemena Brady Klefman Paula Knight Dawn Knowles Avery Koenig Kramer Family Emily Kramer Nicole Kramer FoxyKusin SaraKyle EmilyLake Darryl Langshaw Miyla Langshaw Wendy Leben Brant Lemieux Colton Lemieux Marilyn Leonard Judi & Jerry Lerman Sydney Lerman Sylvia Lewis Sinclair & Charlie Li David Liang, MD BenLopkin

Jason Theriault Kayley Tigges Vincent Topete John Torode Larry Torode Louis Valis UncleVic

Allyson Marisch Norman Martin Mason Mascato Albert Matsuura Erica Mayton Scout McCauley Connor Metz Luis Daniel

Laura Wascha Dylan Watkins Mercedes Weber KarenWeil Alana Wesley Leslie Whittington HenryWied Victoria A. Willhoite Walter & Pat Winship LeslieAnn Wittington Christopher Yasick

Kristi Posival AnnePower Jacob Prunier Brynn Prykucki Christa Puccio Stella Pyatt Guidry Ramoin

Rodriguez Montesino Haley Monts

Kaitlyn Morales Andrew Morrell Pam Moultrup Mary Anne Muriello Hatem Mustafa Joseph Neustadt Patricia Nicolosi JonNiemi Diego Nieto

Tony Yasick, MD Heather Young JaneZore

James Richardson Doug Richter, MD Ayden Riggs Amanda Rivera Gustavo Rodriguez

Mike Yasick TomYasick Elizabeth Anne Steady Young Vince Young

IN MEMORY OF Carol, Adrian, & Elias Adame Mary Beth Adams

Fall 2025 15

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Join me in supporting the Foundation’s 2025 Research& Education Campaign

“When healthcare providers and researchers like me seek career-shaping funding or the collaborations needed for scientific breakthroughs, we turn to the Marfan Foundation. Through your donations, the Foundation powers critically important research and convenes the world’s top scientific minds to accelerate progress for genetic aortic and vascular conditions.” Dr. Kim Eagle A brighter tomorrow depends on the research and education we fund today.

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