Connective Issues Winter 2024

Winter 2024

UNDERSTANDING GENETIC TEST RESULTS

TEAM VICTORY CHAMPIONS FORACAUSE

FOUNDATION EXPANDS INTERNATIONAL REACH

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. We will not rest until we have achieved victory.

Greetings, As we step into a new year, I am proud of the incredible strides we have accomplished together as a community, and so very grateful for each of you who make life-changing progress possible. Thank you! You’ll find highlights of your transformational impact and the Foundation’s recent work on page 6 of this issue. Know that you make all the di ff erence in advancing research, education, community-building, support, and more.

In 2023, we raised awareness and fostered community by stepping out for 23 Walk for Victory events enjoyed by more than 5,500 people. If you haven’t experienced a Walk for Victory yet, I encourage you to join us in 2024. Walk for Victory isn’t really about walking, it’s about coming together with people who get it. Walk for Victory unites us, helps foster friendships among those who truly understand the journey, and provides an opportunity to connect with expert medical professionals in an informal setting. A major focus this past year that we will carry forward is shining a spotlight on the critical importance of supporting mental health and well-being. We launched a dedicated webpage aimed at improving psychological, emotional, and social wellbeing within our community. Monthly virtual support groups, detailed on page 5, provide additional avenues for connection and support. Our support groups are financially free and commitment-free. Check out our online calendar and consider trying one out in 2024. And, with your help, we began to expand our international outreach in 2023—creating a new position, Chief Global and Business Development O ffi cer and making sure Marfan.org is now accessible in 25 languages. Saving lives and empowering people around the world to foster their best quality of life marks a crucial step forward in advancing our mission together. We’re looking ahead to Marfan Awareness Month this February, with a special focus on hearing and sharing your authentic personal stories. Your voice matters! You are the heartbeat of the Foundation’s progress, and we are so grateful. Best wishes for a happy and healthy 2024!

Learn more and get involved at Marfan.org.

CONNECTIVE ISSUES Winter 2024 VOLUME 43 | 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.

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: Jerome from North Carolina, pictured with his wife, Leah, and children, Josiah (5) and Alani (2), shares his story of overcoming years of insecurities and self-doubt through education and community support. Read more on page 4.

Marfan.org Now Accessible in More Than 25 LANGUAGES

We’ve made our website, Marfan.org, accessible in more than 25 languages. The new languages include: Afrikaans, Arabic, Bengali, Catalan, Chinese, Danish, Esperanto, Filipino, Hebrew, Latvian, Norwegian, Polish, Russian, Slovak, Slovenian, Turkish, and Ukrainian. “It’s crucial that people can access

very much impacting and guiding individuals on their unique journeys.” In addition, several Marfan downloadable fact sheets are available in Spanish, Italian, French, and German. Marfan.org features:

• Resource library that sorts materials by conditions, format, audience, and language. • Expanded section on conditions related to Marfan syndrome. • Easy access to the website for the Foundation’s divisions: The VEDS Movement, Loeys-Dietz Syndrome Foundation, and GenTAC Alliance. “People with Marfan syndrome and other genetic aortic and vascular conditions and their family members rely on The Marfan Foundation for reliable, up-to-date information regardless of where in the world they live,” said Eileen

information in their own language, not just because it gives them the comfort of their own language but also for a greater sense of belonging and connection with

others sharing similar experiences,” said Ance Baura, of Latvia, who has Marfan syndrome and is a social media influencer (@mrs.marfelous) raising awareness about the condition. “Vital, life-saving information should be shared widely and readily accessible for all.” The language additions join our existing 12 website languages which include: Spanish, Italian, German, French, Dutch, Swedish, Portuguese, Suomi, Mandarin, Japanese, Hindi, and English. “Accessing medical information about Marfan syndrome in Spanish isn’t just about understanding a condition; it’s about unlocking the power to navigate life’s challenges,” said Betsy Matarrita, of Costa Rica, who has Marfan and serves on the Foundation’s Spanish-Language Planning Committee. “In the language of health, this knowledge becomes a lifeline,  AnceBaura

Novins-Masciale, Chief Global Business Development O ffi cer for the Foundation. “Increasing the availability of our website globally is an important step as we focus on supporting our international community.” The Foundation is o ff ering more multi-language programming in early 2024, including the Third Spanish Language Summit on January 20, 2024. Registration is free but required. Visit Marfan.org/cumbre-de-la fundacion-marfan for more information and to register.

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Winter 2024

OVERCOMING CHALLENGES AND FINDING COMMUNITY: Jerome’s Journey

Living with a genetic aortic and vascular condition can lead to feelings of isolation and take a toll on mental health. However, with a strong support network and a positive outlook, people like 33-year-old Jerome from North Carolina can navigate challenges and find a renewed perspective. Diagnosed with Marfan syndrome at the age of five, Jerome faced numerous medical procedures throughout his life, a ff ecting both his physical and mental well-being. Jerome and his two brothers were diagnosed with Marfan syndrome at early ages due to distinctive physical features such as thin, long fingers and limbs. Their mother had the condition from a spontaneous mutation. Growing up, Jerome regularly saw cardiologists, orthopedists, ophthalmologists, and retina specialists. At 15, he underwent corrective spinal fusion surgery for scoliosis and later lost vision in his right eye due to a retinal detachment. Two years later, he learned that his ascending aorta had enlarged, requiring surgery. Overwhelmed by the physical and emotional toll, he made a risky decision to avoid the surgery. “As a teenager going through all of these drastic changes back-to-back, procedure after procedure - I was terrified,” said Jerome. “I chose not to have the heart surgery strictly out of fear. I had already been through so much, and I’d had enough.” Mental Health Struggles Jerome’s high school years were marked by academic struggles fueled by insecurities about his appearance. Standing at 6’4”, he tried to hide in the background and not let friends get too close, fearing exposure of his family’s health challenges and his own condition. He worried about being viewed as inferior and weak. “My brothers and mom also had similar experiences with being picked on because you look di ff erent - you have longer fingers and you’re super tall compared to the rest of your peers,” he said. “That did play on us mentally but what helped us was always having family and faith.” Focus on Education Jerome pursued higher education at Morgan State University. During his senior year, he felt a tightness in his chest and experienced labored breathing, leading

 Jerome with his wife and children.

to emergency surgery and the implantation of a mechanical valve. After his surgery, Jerome gained a new perspective on life. “My life definitely changed after that,” he said. “I was determined that I wasn’t going to allow my condition to stop me from being the first in my family to go to college and set a new standard for my family. I was able to use Marfan syndrome and all my experiences as motivation to push forward.” Determined not to let his condition hinder his goal, Jerome shifted his focus to academics, eventually graduating with a degree in finance in 2013. However, throughout these years, Jerome continued to keep his struggle with Marfan syndrome hidden from friends. Joy and Loss Jerome’s post-college life brought simultaneous joy and loss. In 2017, Jerome married and later became a father to two children, Alani and Josiah, neither of whom

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have Marfan syndrome. Tragedy struck in 2017 when Jerome’s younger brother passed away during his wife’s pregnancy with their first child, Josiah. Then in 2021, as they anticipated their second child, Jerome’s older brother passed away due to complications from Marfan syndrome. “Both times, I had tears of joy because I’m expecting a child but yet tears of mourning and sorrow,” said Jerome. “Those moments of joy helped me focus on the positive and great things in my life and not just dwelling on loss - loss from my physical body, from vision, to the loss of family members.” Connection Leads to Healing Jerome first discovered The Marfan Foundation while researching his condition. He later attended a regional meeting and conference which proved to be life changing. “For the first time, I felt the sense of normalcy,” said Jerome. “I was able to be open about everything and not feel like an alien. It was amazing to be in an environment where other people understand and help you. That was one of the greatest experiences I’ve ever had.” Jerome continued building connections and working to improve his mental health by joining Marfan specific social media groups, getting professional counseling, and attending support groups hosted by the Foundation, including Grief and Loss, a monthly virtual support group. These outlets provided a community where he could openly share his experiences and improve his mental health. “I would get emails about the Grief and Loss support group, and finally decided to attend because I understood that in order for me to be the best dad, husband, and human being I could, I needed to take the first step,” he said. “I realized that I was not taking care of myself. I hadn’t mourned the loss of my brothers. Through these groups, I’ve learned to be grateful and appreciate where I am.”

 Jerome, left, with his mother and late brothers.

These days, Jerome is more intentional about maintaining a positive mindset and taking time for himself to improve his mental health and outlook. He enjoys walks, trying new healthy foods, listening to music or sermons, and interacting with his Marfan community. “It’s important to build a community because one of the most important things for your mental health is knowing you are not alone,” Jerome said. “There’s a weight lifted when you understand there are people going through something similar, and it’s a beautiful thing when you can help other people. We all have gifts and talents and bring value to the world.”

The Foundation offers monthly virtual support groups covering a range of topics. Feel less alone, share experiences, learn from others, and create bonds with others in our community. All support groups are free and there is no commitment. Try one out! Foster Your Well-Being: Join a Virtual Support Group!

Monthly Support Groups – Explore the groups that are right for you and sign up at Marfan.org/virtual-support-groups.

• 50+ Support Group • Coping with Grief & Loss • Kids Club

• Teen Chat • Teen Game Night • Time to Talk: Monday Matters (formerly COVID)

• Loeys-Dietz Connect • Marfan Connection • Newly Diagnosed/Seeking Diagnosis • Pain Management • Parents-All Conditions

• Young Adults • VEDS Connect • VEDS Parents

Be sure to check out our mental health webpage!

• VEDS Partners & Spouses • VEDS Parents of Kids 18+

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FOUNDATION IMPACT: A Year in Review THE POWER OF OUR COMMUNITY Research and Education programs fuel connections globally.

Programs & Events

2022-2023

2023 Marfan Foundation 39 th Conference – Chicago, IL

Marfan Awareness Month Loeys-Dietz Awareness Month VEDS Action Month Aortic Disease Awareness Week International Research Symposium International Patient Meeting

Total Attendees

628

WALKFOR VICTORY

Countries Represented

12

61

78

Children

Teens

Educational Webinars Virtual Support Groups Regional Symposiums

Attendee Condition Connections 260 Marfan 96 VEDS 118 LDS 27 Other

22 Walks for Victory including 1 Global Walk

Walk for Victory in 22 Cities Virtual Global Walk for Victory Evening with Heart in Scottsdale, AZ and Raleigh, NC Heartworks in St. Louis, Houston, NYC, Chicago UnCorked Wine Event Camps in California and Georgia VEDS Community gathering in Houston LDS Community gathering in Chicago

Over 30 medical workshops on Saturday and 30 mental health workshops on Sunday.

98% of participants

Over 5,000 people

Health Fair at Conference

ratedvery positive to extremely positive

Physicians and Healthcare Professionals

55

Health Fair Participants

68

In 2023-2024 we are planning 23 Walk for Victory events around the world reaching over 5,500 people. Last year we had community chairs from the Marfan, VEDS, and LDS communities.

Multidisciplinary Health Fair Appointments

331

Spanish Language Summit New Mental Health Resources

42 YEARS

We reach more than 5,000 people around the world via emails and one on-one phone calls with our nurse or social workers through our dedicated

Help and Resource Center. Our nurse and social workers help connect our community with the necessary resources

5 , 0 0 0

Research& Progress Serving individuals and families as well as doctors, researchers, genetic counselors, nurses, social workers, and many other healthcare professionals from around the world who treat and care for our community.

including our institutional directory, mental health resources, support groups, educational materials, and so much more. l h l h

We connect thousands of individuals and families to the 70 institutions around the country that offer experience and expertise in Marfan, LDS, VEDS, and other genetic aortic and vascular conditions.

7 0

We continue to reach over a million people each year with educational resources.

1 M I

L L I O N

Since 1986

1

1

WHERE DOES THE MONEY GO?

FUNDED GRANTS CURRENTLY FUNDING 22GRANTS IN THE AMOUNT OF $2.3M 170

1

1

35% 28%

18%

81¢ OFEVERY $1RAISED GOES TO OUR MISSION

RESEARCH

PATIENT SERVICES

EDUCATION & PUBLIC INFORMATION

To download our 2023 Infographic, scan the QR code.

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A Legac y of Impact

When Everett Butts passed away in August 2023, just shy of his 100 th birthday after a long and fulfilling life, he left behind a legacy of impact and lasting awareness about Marfan syndrome – including 100 life-saving gifts made since 1995. Everett was a World War II Army veteran who owned a plant nursery in California. He was also an outspoken advocate for Marfan syndrome following the 1995 death of his son, Jonathan. Jonathan passed away suddenly at the age of 30 after an aortic dissection. Everett and his wife became staunch supporters of Marfan education, awareness, and philanthropy. “None of us had ever heard of Marfan syndrome, and it seemed to Everett and Marilyn, my mother’s sister, that most healthcare providers didn’t either,” said Brad Nystrom, Everett’s nephew. “So, they started educating themselves and talking to people.” Everett and Marilyn became very active in raising awareness for the condition by supporting the Foundation, attending educational events at Stanford Medicine related to Marfan syndrome, and spreading the word to physicians. “There were quite a few times when Everett approached strangers who had what he called ‘the Marfan look’ to tell them about Marfan syndrome,” said Brad. “He was always willing to risk an angry rejection in order to save a life.” After Everett’s passing, Brad reached out to the Foundation to disclose Everett had named it as a beneficiary in his trust, leaving a contribution that will continue his legacy of impact. “He did not have a lot of money,” said Brad. “But he was determined to educate others to raise awareness about Marfan syndrome. I think that in this way he made an important contribution to the cause.”

“Everett’s gifts have greatly touched and impacted the Foundation and the communities we serve,” said Helaine Baruch, Chief Philanthropy O ffi cer. “He has contributed to the Foundation since 1995 in memory of his son and has made more than 100 gifts to our organization. We cannot express our gratitude enough for his thoughtfulness, advocacy, and generosity.”

Did you know? The Foundation o ff ers di ff erent ways to leave your legacy to the Foundation while providing financial benefits for you and your family. You can learn more at MarfanLegacy.org. Make plans to join us for a free estate-planning webinar. Guest speakers Alice Leopold, CRPC®, CLTC®, Executive Director-Investments and Financial Advisor, Oppenheimer & Co. Inc., and Amy

J. Guss, Partner and Chair, Private Client Services Duane Morris LLP, will discuss common mistakes to avoid when estate planning and answer your questions on Wednesday, February 7 at 7:30 pm ET .Watch for registration details on our website.

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Decoding Genetic Insights: Navigating Possible Test Results Understanding your genetic test results for conditions like Marfan, Loeys-Dietz, or VEDS can be challenging. Here’s a simple Q&A to help make sense of what your results may mean and what you might consider doing next.

Q: What does a positive genetic test result mean? A: A positive result means a genetic variation that can cause a genetic condition has been found.

specific genetic variation responsible for a personal history of thoracic aortic aneurysm is only identified about 20% of the time. So, if your test results don’t provide clear answers, you’re not alone in this experience.

Think of genetic variation as a change in the spelling of a gene. You may see this called a pathogenic or likely pathogenic variant. You may also see this called a mutation. A positive result typically confirms the diagnosis if the variation matches your clinical diagnosis. Sometimes, it may indicate a di ff erent condition than was initially thought (although usually, this would be a similar or related condition), potentially a ff ecting your risks and medical care. A positive result allows family members to have cascade testing. Cascade testing is a process where family members are tested for the same genetic variation, helping to determine their risk of having the condition or passing it on to their children. Q: What if the test result is negative or uninformative? A: A negative result means no known variations were found in the genes tested - but it doesn’t always mean there is no genetic condition, as there could be variations in other genes not tested for or limitations in the test’s ability to find your family’s specific genetic variation. This is why calling this an “uninformative” test may be more accurate. This can be a frustrating or confusing result for those seeking answers. In the context of aortic disease, it’s important to understand that a negative or uninformative result is quite common. In fact, overall, the

In such cases, you might think about more tests for di ff erent gene changes, especially if your signs point to a genetic condition that wasn’t initially tested for. Alternatively, you may have had uninformative testing years ago – new gene discoveries and improved technology may have increased the likelihood of finding your family’s specific mutation now. Talking with a doctor or genetic counselor can help you decide if more tests are a good idea for you. If a family member who is thought to have the condition tests negative, undergo genetic testing (although echocardiograms or other imaging for potentially at-risk family members may be recommended). However, a negative result in cascade testing (when the family’s mutation has already been identified) typically means the person’s risk is similar to the general population for that condition (in other words, they haven’t inherited the condition that runs in the family). Q: How should I interpret a Variant of Uncertain Significance (VUS)? A: A VUS is a genetic change that’s e ff ect on condition risk is not clear. it’s usually not recommended for other family members to

“Genetic testing can not only help us find a gene variant to use for testing family members and figuring out who is at risk, but results can also help us to “tweak” your healthcare, providing specialized medical management based on the specific gene, and possibly the variant, detected.” ~Gretchen MacCarrick, MS, CGC, a genetic counselor at Johns Hopkins and professional advisory board member for the Foundation.

Continued on page 9

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It doesn’t confirm or rule out a genetic condition. Over time, as more research is done, the classification of a VUS might change. It’s important not to use a VUS for making medical decisions, as its significance is not clear. Testing of family members for a VUS is generally not recommended and wouldn’t be helpful outside of specific situations where your family could help scientists learn more about the VUS. The lab or genetics professional involved would help to coordinate this, if applicable. Q: Can the interpretation of genetic test results change over time? A: Yes, as genetic research advances, interpretations of FOUNDATION HOSTS Marfan-Focused Symposium The Foundation sponsored a guest symposium focused on aortic disease in Marfan syndrome and related conditions at the American Society for Matrix Biology meeting in October. The meeting hosted 550 students, trainees, investigators, and educators from around the world who work on cutting-edge basic, clinical, and translational research related to biology of cells and tissues, as well as molecular and cellular alterations that drive disease processes. Dr. Jo Grima, Chief ScienceO ffi cer at the Foundation, and Dr. Lynn Sakai, Adjunct Research Professor at Oregon Health & Science University and member of the Foundation’s Professional Advisory Board, chaired the Marfan symposium. “A major goal of the ASMB meeting is to get a better understanding of matrix disorders, and therefore, provides an opportunity to bring together leaders in the field to discuss conditions like Marfan syndrome,” said Dr. Sakai. “The opportunity to learn about and discuss these important studies is crucial to finding treatments and improving the lives of those with Marfan, Loeys Dietz, VEDS, and related conditions.” Several speakers (see sidebar) were invited to present their work. Dr. Chris Schoenherr discussed a new approach for screening candidate genes that may modify severe aortic disease in Marfan mice and showed positive results for at least one gene. Two other studies were based on recent trends investigating di ff erences in the progression and outcomes between males and females a ff ected with Marfan syndrome. Since 2010, many clinical studies in humans have shown that men have a higher risk for aortic aneurysm, dissections, and surgery. Several other studies have documented this increased risk in males using di ff erent Marfan mouse strains. At this meeting, studies presented by Dr. Dieter Reinhardt and Dr. Sarah Parker attributed these sex di ff erences to possible hormonal protective

test results may evolve. This is especially true for VUS, where new information can change how these variants are viewed. It’s essential to keep up-to-date and talk with your healthcare provider about any new information. Q: What are the next steps after receiving genetic test results? A: Discuss your results with your doctor or genetic counselor. They can help you understand what the results mean in relation to your health and family history, and suggest the next steps. This might include specific medical care, lifestyle changes, or more genetic testing for you or your family. Genetic testing is just one part of managing and understanding your health.

e ff ects in females. One study suggested that increased estrogen levels could account for these di ff erences since male Marfan mice treated with estradiol showed improvements in a few aortic markers and reduced aortic root sizes. Although treatment of males with estradiol did not return them to normal. These studies indicate that additional work investigating the role of hormones may provide some valuable insights for future treatments. Clinical studies of women with Marfan syndrome and related conditions who are on estrogen therapies may be an important next step. • Targeting Aortic Aneurysm in Marfan Syndrome Mice Chris Schoenherr, PhD, Regeneron Pharmaceuticals • Sex-Specific Pathologies in the Aorta and Fat Tissue of Marfan Mice – Dieter Reinhardt, PhD, McGill University • Leveraging Molecular Patterns of Resiliency in Females to Understand Drivers of Aneurysm Severity in Marfan Syndrome – Sarah Parker, PhD, Cedars-Sinai Medical Center • Fibulin-4 and Fibulin-5 Serve Distinct, Non-Overlapping Functions in Elastic Fiber Assembly and Cardiovascular Physiology – Carmen Halabi, MD, PhD, Washington University • O-Glucose Modification of Fibrillin Epidermal Growth Factor Repeats is Essential for Mouse Lung Development Sanjiv Neupane, PhD, Stony Brook University Presenters: Aortic Disease in Marfan Syndrome and Related Conditions

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TEAM VICTORY: Taking Strides for a Cause! Ten years ago, the Foundation became a Charity Partner with the TCS New York City Marathon and put out a call for runners willing to take on the largest marathon in the world while raising awareness and funds for genetic aortic and vascular conditions. Team Victory was born, and since then, we’ve been amazed with members of our community who have completed this challenging race. Each has their own unique story and reasons why they ran, but all share a common cause.

Dr. Elvis Danne Jr., DPM, AACFAS, DABPM, assistant professor of podiatry in clinical surgery at Weill Cornell Medical College, finished the 2023 TCS New York City Marathon on November 5. He decided to take on the challenge to honor his friends and fellow runners, Grace Ehrbar, who has VEDS, and Robyn Li, whose two children have a connective tissue condition. “Due to my profession, I knew about VEDS, Marfan, Loeys Dietz, and EDS and the personal connection to those conditions really changes things,” said Dr. Danne. “When miles during the marathon became di ffi cult, I would look at the zebra bracelet and the Marfan singlet as a reminder to keep pushing.” Congratulations to the TCS NYC Marathon Runners. Together, they exceeded their goal of $40,000 and raised over $70,000 to help further the mission of the Foundation!

• Jenny Braverman • Dr. Elvis Danne Jr. • Sondra Dickey • Sofia de la Garza

• Thomas Hughes • Julia McNeill • Allison Pullins • Neal Richardson

• Nick Talbert • JackToce • Lyndsey Toce

 Dr. Elvis Danne Jr.

“After completing the marathon, I felt an overwhelming sense of accomplishment and joy,” said Allison Pullins who ran with her husband, Neal Richardson, to honor their son James, who has Marfan syndrome. “It wasn’t only about crossing the finish line, but rather the journey and the incredible support I received along the way. Every step I ran was dedicated to the strength and resilience of the Marfan community.”

 Allison, Neal, Naomi, and James.

If you would like to be a part of Team Victory 2024, contact Alyssa Aiello at aaiello@marfan.org.

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MEDICAL EDUCATION: Expanding Alliances and Partnerships

New in 2023, the Foundation became a Charity Partner with runDisney, o ff ering Team Victory participants the magic of Disney combined with running options for its Disney Wine & Dine Half Marathon which was held November 3-5. Runners could choose from a 5K, 10K, or half marathon while enjoying Disney character sightings and entertainment. Congrats to the Disney runners who raised more than $10,000. • Jared & Jordan • Andrew Karistinos • Isabella Montemagno • Tyler Mott • Dominga Noe • Joseph Allen • LukeWard

It is important for people with genetic aortic and vascular conditions to see medical professionals who can identify, understand, and know the best treatment options for these conditions as they can be complex and impact multiple body systems. To better equip doctors who do not have extensive experience with Marfan, Loeys Dietz, and VEDS, the Foundation works year round on initiatives to

 Front row: Tammy Kegley, Tomas Martin, MD, and Jill Hendrickson, MS, MSSW, LCGC, from UF Health Aortic Disease Center, at their First International Aortic Symposium. Back: Long-time volunteer, Chris Idhe, of Cocoa Beach, FL.

educate doctors and other healthcare providers on the latest management guidelines to help ensure better care for patients. This is a primary focus for the Foundation’s GenTAC Alliance, the division that brings together clinicians and researchers interested in genetic aortic conditions from all over the world. In November 2023, we launched a new website for GenTAC, GenTACAlliance.org , that highlights best practices, clinical management videos, and registries on all forms of genetic aortic and vascular conditions. In addition, it provides key publications, continuing medical education (CME) opportunities, and other news that is relevant to these conditions. The Foundation also collaborates with hospital partners on CME programs related to these conditions. In December, the Foundation connected with more than 150 healthcare providers at the University of Florida’s First International Aortic Symposium in Orlando. Also last year, the Foundation participated in CME programs at Cleveland Clinic and the University of Pittsburgh. Both of these events were hybrid, reaching not only those who were there in person but hundreds more who participated virtually. “The Marfan Foundation and the GenTAC Alliance partner with experts in genetic aortic conditions to communicate knowledge and inform best practices worldwide,” said Dr. Alan Braverman, Washington University School of Medicine and member of the Foundation’s Board of Directors and Professional Advisory Board. “Educating doctors and other health care professionals about Marfan syndrome and related conditions saves lives. I am proud to be a part of this important mission.”

 Luke Ward ran the 5K in honor of his son, Dion (shown), age 12, who has Marfan syndrome.

In December, two moms with children a ff ected by VEDS, Monica Kile and Morgan Jozwiak, made the commitment to join forces and run a relay in the California International Marathon, raising awareness and over $4,000 in donations to help The VEDS Movement. “Morgan and I share a passion for running, but beyond that, we are kindred spirits - mothers to children with VEDS,” said Monica. “We both know from personal experience how awareness canchange

outcomes. It is empowering to contribute in some small way to both research and awareness of VEDS.”

 Morgan and Monica in front of the California State Capitol building following the California International Marathon.

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Make plans to join us at one of these upcoming walks. More dates and locations are being added so be sure to check the website at Marfan.org/walk . ★ Jan. 28 – South Florida (Hollywood) ★ Feb. 3 – Southern California (Costa Mesa) WALKFOR VICTORY EVENTS

Walk for Victory is a great way to connect with your community in a fun, casual environment. People of all physical abilities are welcome. We focus on gathering to make new friends, deepen existing relationships, and chat with medical experts – all while celebrating our community and raising critical funds to support our mission.

★ May 19 – Denver, CO ★ June 1 – Boston, MA ★ June8 – Chicago, IL ★ June8 – Portland, OR ★ June 15 – Milwaukee, WI ★ June 15 – Philadelphia, PA ★ June22 – Des Moines, IA ★ June22 – Virtual Global Walk

★ March2 – Houston, TX ★ March3 – Phoenix, AZ ★ April 20 – Raleigh, NC ★ May4 – Northern California (Aptos) ★ May 18 – Pittsburgh, PA

With hearts united in caring, 125 members of our Foundation community came together on November 4 with two missions: to raise awareness and funds for those living with genetic aortic and vascular conditions and to show solidarity for those touched by last spring’s tragic mass shooting at The Covenant School. “In the face of tragedy, our Nashville-area community demonstrated resilience, unity, and a commitment to making a positive impact,” said Dr. Clay Kaiser, Medical Chair for the rescheduled November Walk. “It was an uplifting day filled with love and kindness and a true appreciation for one another.” During the event, Meredith Mischner, director of development for our walk program, presented a special donation to the school on behalf of the Foundation. Our contribution was made in memory of Evelyn Dieckahus and in honor of the Dieckhaus family, including Dr. Michael Dieckhaus of Ascension Saint Thomas. Additionally, the donation honors Covenant student and Marfan Youth Ambassador, Jack Guglielmo. The funds were earmarked for health and wellness initiatives, aligning with the Foundation’s mission. Nashville WALKFOR VICTORY UPLIFTS COMMUNITY

 Meredith Mischner (right), Director of Development and Walk coordinator, presented Christy Foster (left), Director of Communications for The Covenant School, with a donation.

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SPECIAL EVENTS The Foundation hosts several special fundraising events throughout the year. These opportunities provide an entertaining night out with friends, colleagues, and family while raising awareness and funds to support our mission in a more formal setting. The galas o ff er dining, music, auctions, and great camaraderie while we celebrate

EDUCATIONAL EVENTS Regional symposia are an excellent opportunity to learn how to live better with Marfan, Loeys-Dietz, VEDS, and other genetic aortic and vascular conditions. Attendees can learn about the latest advances and treatment options from medical experts and connect with others in the area. To learn about these programs, visit Marfan.org/ educational-opportunities . ★ April 13 – Austin Regional Symposium: Living Better with Marfan, Loeys-Dietz, & VEDS (Austin, Texas) In collaboration with: empowering stories and recognize members of our community who have made an outstanding impact in advancing our mission. We also host unique niche events like UnCorked, which combines a fun atmosphere with the chance to enjoy fine wines. Learn more about our gala events and purchase tickets at Marfan.org/events . ★ February 23 – HeartWorks Chicago, The Fairmont ★ February 29 – UnCorked, Metropolitan Club, NYC ★ April 27 – HeartWorks St. Louis, The Four Seasons ★ May21 – HeartWorks New York City, The Rainbow Room

Save the Date!

★ May 11 – NW GAAP (Northwest Genetic Aortopathy and Arteriopathy Program) Symposium: Living Better with Marfan, Loeys-Dietz, & VEDS (Portland, Oregon) In collaboration with:

Virtual Conference Coming in June

Make plans now to join us for a virtual conference in June. Watch for details coming soon!

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Winter 2024

“Stars Align” at Camp Victory Every young person deserves the chance to spend time with peers. Living with a genetic aortic and vascular condition can feel lonely – especially for young people. The aim of our Camp Victory program is to help kids and families connect with others experiencing similar journeys and to especially provide children and young adults with the chance to enjoy a traditional camp experience within the safety net of on-site medical supervision. “Before attending Camp Victory, my son Jack had never met someone outside our family with LDS,” said Brenda whose children Jack and Willa took part. “There is an ease that comes with being together with other families who share the experience of living with this condition.” In 2023, the Foundation hosted Camp Victory for Kids and Camp Victory for Families in Georgia and California. Campers were able to participate in fun indoor and outdoor activities like swimming, games, fishing, hiking, rock wall climbing, crafts, and much more. Don’t miss out in 2024 – make plans now to attend Camp Victory in Georgia or California. Watch for details coming soon at Marfan.org/Marfan-camps . Camp Victory for Kids ★ July 21-26, 2024 –Georgia ★ Dates TBD – California Camp Victory for Families ★ September 20-22, 2024 –Georgia ★ Dates TBD – California

Our family discovered our Loeys-Dietz diagnoses in 2015, and while we have been focused on managing our care, we have not really had the opportunity to connect with other members of the LDS community. The stars aligned for us to attend Camp Victory together in October. While my kids have gone to di ff erent camps, including one for children living with heart conditions, I’ve never had an experience like Camp Victory before! As an adult with LDS, it meant a lot to me as well. In addition to all of the activities, I truly enjoyed the opportunity to speak with the doctor. We loved getting to experience camp with so many others who live with this condition. There’s just no way to verbalize how much that helps. Camp Victory exceeded our expectations 100%. We would love to come back to Camp Victory. It was perfect! Brenda

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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 11, 2023 – November 30, 2023. These donations support our programs and services that create a brighter future for all those living with Marfan, Loeys-Dietz, VEDS, and related conditions. 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

Anne Newman Andrew Nikithser Cathleen Nilles Michael Nygaard

Sinclair Li Sydney Lerman MaryLobo Micah Lupason Georgia Mace Isabella Marin Grant Martin Taborski McClellen Caroline McNeill

Brian Barker Kelly Barnes TJBarulli Scott Bergkamp Je ff Berkowitz JohnBerry Christopher Blum Michael Brandt David Braverman Carol Brennan Jennnifer Bu ff one

Richard Hill MaxHommel JohnHoran Dwight Hurst Olasupo Fowowe, II Gayle Johnston

Kristen Anderson Joseph Ashworth Angelo Asimakopoulos Filip Avramovic Stefano Bagnato Caroline & Jennie Bange Huggie Bear

Daniel Miriti Pacheco Christopher Paulsen Sunny Pellone Roberta Pfleging William Polis Matthew Powell Michael Reading Briley Reiland Ann Reinking Jadzia Renaud Jonathan Reyes Shirley Rigney Ilene Roberts Linda Rohrbaugh Pam Scanlon David Schettler Justin Scoggin Lucy Anna Sellin Jeremy Semano ff AvaShaw Gurcharan Singh

Nate Jones Sarah Jones Michael Jordan Je ff Bullis Jr Homer DeNeal Ailstock, Jr. Guy J. Comeaux, Jr. Eleni D. Kafantaris MaryKau ff man Bruce Klein TomKor ff John Krause Patrick Kremer Darryl Langshaw Brian Laughman Alexa "Lexi" Lawrence Milan Lazorcik Shauna Gayle Lee Jack Lemmer MaryLobo Anthony Lucido

Ricardo Belchior Debbie Berkowitz JackBish Izaak Boeglin Sebastian Brady David Braverman Dr. Alan & Rebecca Braverman Beth Brobst Austin Carlilse Huxley Clark

Myla Mickschl Jess Millburn Danny Murphy Christy Nath

Brody Bullock Eileen Burchett LeahBurke Paul J. Burke, III Carmine Calisi Jorge Alberto Castellanos SarahCayo Aileen Cheng Steven Ciccariello Joseph, Gloria, Joe, & William Colavito Jordan Myles Colon Richard Coren George Covington

Joseph Neustadt Theresa Newton Jim Northcutt Noah Padilla Elizabeth, Teddy, & Ford Petty Kendall Podsen AnnePower Amanda Rivera Alison Robinson FrankRoss Justin Scoggin Sondra Scott Jeremy Semano ff LillyShaw Evan Smolen Robert Steinbach Family Will Stubbs Larry Torode AnnieToy Kate Van Middlesworth Alexandra Weygand William Westmoreland The Wettero ff Family Connor Wilson Katie Wright Heather Young Virginia S. Anderson Katherine Anderson-Nix Chris Archevald Angelo Asimakopoulos Wayne Ayscue Anita "Nikki" Bagnell The Pullins Family James Richardson

Princess Aurora Clark Dani Beth Clements Gram and Papa Cooper Sofia Maria De La Garza Abelardo DeAnda James Dickey The Doehring Family Dimitrios Donavos The Feinstein Family

CJ D'Angelo Scott Daniel Graham DiMartino J. Doehring Karen Dragon Paul East Jay Elliott Sean Elmore Michael Enbar Beverly Feinstein Eric Fitzgerald Alyssa Flaherty EllenFord Brian Gabel JustinGee Brian Joseph Gilmore KevinGray Andrew Gross Gabi Guaipatin Ken Hammond Montell Hammond Michael Hansen

John Snyder Cari Spencer Ethel Spieker

RudyLuna Frank Marin

Robin Flaherty Kevin Forno ff Heidi Green Isabella Green Jack Guglielmo Toby Hamilton ArloHaren Lucy Henderson Jessi Henter Michael Henter

Casey Sprouse Aleesha Steele Grandpa Bob Steinbach Kimberly Stern Margaret Chaney-Stolle Carrie & Will Stubbs Clara Swarts Luke Terrell John Torode Larry Torode Annie Yee Chun Toy Luke Wagner Wendy Weiss Alana Wesley Ronald Westcott Douglas Marshall Whidden HenryWied

Norman Martin Albert Matsuura

Erica Mayton Joey Mazzuca James Daniel Meckler Kimberly Merkel Richard Mitchell TomMiyake John Monroe Luis Daniel Rodriguez Montesino HuckMoore Patricia Moran Sandy Morris Pam Moultrup Nancy Movshin Donna Mullins Ilana Mysior Lauren Bates Naddy Joe Neustadt William J. Morin Andrew Morrell

Kelley Horan Luke Hosking Beckett Hotchkiss Princess Huxley Lucy Jane Jerrod Jung Dawn Knowles SaraKyle Reeves, Grant, & Jen Olson EmilyLake Darryl & Miyla Langshaw Jean Francois Lavoie

IN MEMORY OF

Averie Williams David Williams Nina Wilson TomYasick Reut Zokovsky

Zara Harding Chris Heaney Michael Henter

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Winter 2024

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