Connective Issues Spring 2024

Spring 2024

EVEREST AWARD RECIPIENTS ANNOUNCED

FAMILY SPREADS AWARENESS & HAPPINESS TO PATIENTS

MARFAN AWARENESS MONTH BREAKS RECORDS

Greetings, What an exciting season this has been for the Foundation! We have so much to celebrate. We’ve had tremendous Walk for Victory events across the country that brought together our community members, renewing long-standing friendships, and creating new connections. Our Houston event saw the largest VEDS team in our history. We gathered for record-breaking fundraising galas that enable us to advance our mission. Thanks to the

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.

generosity of our supporters, we’re funding a new Everest Award with the potential to enhance prevention and treatment of aortic dissection. We’ve held educational symposia recently in Austin, Texas, and Portland, Oregon, and webinars – such as our recent Loeys-Dietz-focused webinar on women’s health – that helped empower our community members to live their best lives. This edition of Connective Issues reflects the Foundation’s dynamic energy. Don’t miss the chance to read all of our stories, including pieces about: • Virtual Hill Advocacy Days where community members used their powerful voices for good • Our Everest Award granted to Dr. Julie De Backer and team • Community member Buddy Benge’s talk that educated 10K people about Marfan syndrome • A recap of our record-breaking Marfan Awareness Month 2024 • Jameson’s family toy drive • Our global outreach and Spanish-Language events • Bella Sera – a talented percussionist who rocks life with Marfan syndrome As terrific as the past few months have been, we might say “the best is yet to come” because we have so many wonderful happenings set for late spring, summer, and autumn. We have eight more walks to look forward to in June. Camp Victory registration is open and provides families and young people the chance to enjoy a full summer camp experience that is safe and medically-supervised. Symposia are coming to London and Oslo this summer, convening experts and laypeople. And, last but not least, registration is opening for our Global Virtual Conference 2024, which will be held June 17-22. No sessions will be held on June 19, in recognition of Juneteenth. Our Global Virtual Conference connects people living with genetic aortic and vascular conditions, their loved ones, healthcare providers and researchers from around the world for a unique event that holistically explores the many facets of life with Marfan, Loeys Dietz, VEDS, and related conditions. Topics include advancements in medical management, mental health and well-being, the latest research, building community, and much more. A series of live engaging sessions will culminate with a virtual Victory Party celebration. Looking forward to being with you for the Global Virtual Conference and at in-person events around the country and the world! Thank you for bringing the Foundation’s mission to life every day!

Learn more and get involved at Marfan.org.

CONNECTIVE ISSUES Spring 2024 VOLUME 43 | NUMBER 2 Connective Issues is the newsletter of The Marfan Foundation. It is published three times per year.

Inquiries should be addressed to: brandcomms@marfan.org

This issue of Connective Issues is made possible through a grant from The Chu and Chan Foundation.

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: Drummer Bella Sera fulfills her passion while living with Marfan syndrome. Read more on page 12. Photo courtesy of Reece Paz.

EMPOWERING VOICESTO CREATE CHANGE

became “a mom on a mission,” advocating for education and research for rare diseases. “It was something that I could do--an action that I could take--at a time when I felt desperate to make things better for my children,” she said. Colleen and Seth met with Senator Ted Budd’s o ffi ce, North Carolina. “I discussed the importance of voting to increase funding and the impact Marfan syndrome has had on our family,” said Colleen. “I had a chance to explain how increased education and research can improve lives and positively impact the cost of care delivered.” Seth’s mission was to discuss with his representative the economic and community benefits that are tied to funding for rare disease research. “I was able to explain how proactive treatment can

Capitol Hill Advocacy Days Making their voices heard is one way members of our community can feel empowered through volunteering with the Foundation. Recently, Virtual Capitol Hill Advocacy Days held April 9-11 presented a

I was able to ex re o

meaningful chance for people with genetic aortic and vascular conditions to a ff ect change. “Advocating for education and research is key and the number of voices matters,” said participant Colleen whose two children, Seth and Analise, have a Marfan variant. After attending a training webinar,

educe large/surprise medical costs on families as well as how access to dequate treatment can even serve to help individuals reenter the workforce,” he said. “Both of these serve to reduce he strain on the local economy as well s state and federal social programs.” Colleen stressed continued e ff orts hrough emails and phone calls are an mportant follow-up as well as raising for Marfan syndrome and related a h h th a th im

Colleen, Seth, and 29 other community members met directly with 37 congressio sta ff members to share stories, discuss issues important to them, and encourage support of policies that maya ff ect healthcare and research. An experienced advocate from the Health and Medicine Counsel led each session. Working in public health as a clinician, Colleen felt frustrated by the unknowns and lack of empirical evidence, leading her to contact the Foundation for resources and organize a local Marfan group. She onal

visibility conditions with me visibi

conditions with media and on social media. “We may not always recognize how policy shapes our lives, but the truth of the matter is that it can make a worldof di ff erence,” said Seth. “It is our responsibility to educate our policymakers on our community's needs. Like with any movement, our voices become stronger, louder, and clearer the more people we have involved in advocacy. If there is some change you want to see in the world, do not be afraid to say it out loud, and work to make it happen!”

Want to learn ways to be involved like spreading awareness and advocacy? Visit Marfan.org/get-involved .

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 Laboratory team of Julie De Backer, MD, PhD (center), Patrick Sips, PhD (right) – Belgium

Team of Researchers Receive EVEREST AWARD

The Marfan Foundation has granted its second Everest Award to a team of researchers led by Julie De Backer, MD, PhD, a cardiologist and clinical geneticist at Ghent University in Belgium who actively provides care to individuals with Marfan syndrome and supervises clinical research of the condition. If successful, Dr. De Backer’s project may lead to the development of new treatment options for the prevention of aortic dissection in people with Marfan syndrome, potentially reducing the need for surgical repair. “For years, we have understood that inflammatory processes play a crucial role in aortic disease in Marfan

syndrome, yet the complex roles of specific immune cells remain a mystery,” said Dr. De Backer. “Through this esteemed Everest Award, our collaborative global research will leverage cutting-edge techniques to unravel these intricate processes. This project not only promises to explore options to implement immunotherapy for Marfan syndrome but also exemplifies the pivotal role of The Marfan Foundation’s support in paving the way for these innovations. Together, we are very eager to explore new pathways to treatment that could transform the lives of people a ff ected by Marfan syndrome and related (heritable) thoracic aortic diseases.” Dr. De Backer’s Everest project will further investigate the specific immune cells associated with tissue damage in the wall of the aorta of mouse models with defects in

The Everest Award is the Foundation’s largest grant designed to “reach the summit” on a critical path to a breakthrough in basic or translational science that has direct relevance to human health. To learn about the Foundation’s research impact including how to get involved, view previously funded grants, and how to support, visit Marfan.org/research.

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the fibrillin-1 gene. If there is a clearer understanding of the role these cells play, Dr. De Backer and her project team can gain insight into how tissue damage develops in the aorta of individuals with Marfan syndrome and test whether treatments aimed at these specific cells can help prevent further aortic damage and rupture. To improve the potential translation of these results to clinical practice, aortic samples from individuals with Marfan syndrome will be examined for evidence of the involvement of similar immune cells. In past studies using mouse models, Dr. De Backer and her collaborators have discovered that specific cells from the immune system can be found in the aortic wall of mice with Marfan syndrome, close to the regions of tissue damage. Di ff erent immune cell types were observed in mouse models with mild damage to the aorta when compared to those with severe damage to the aorta, suggesting that these immune cells are involved in the early stages of the development of tissue damage in the aorta before rupture occurs. This project relies on a strong, collaborative, interdisciplinary e ff ort between the research groups in Ghent, Belgium, led by Drs. De Backer and Patrick Sips, and Tsukuba, Japan, led by Dr. Hiromi Yanagisawa. The teams can also count on invaluable contributions from the groups of Dr. Lynn Sakai (Oregon Health & Science University), Dr. Bart Lambrecht (Ghent University), and Dr. Mitsuhiro Ebara (National Institute for Materials Science, Japan). THE FOUNDATION AWARDED DR. DE BACKER’S PROJECT, Contribution of immune cells to vascular wall damage and dissection in Marfan syndrome, $220,000 for one year, with the opportunity for additional years of funding based on annual milestone reviews by the Foundation’s scientific advisory board. Up to four years of funding for $880,000 is available for this study.

“Dr. De Backer and her team present an exciting investigative opportunity for patients with Marfan syndrome. While there is an increasing awareness that inflammation may underlie or exacerbate symptoms and risk in Marfan syndrome, little is known about the interplay of the immune system and Marfan mechanisms of disease. With the Everest Award, Dr. De Backer and colleagues will define foundational properties of immune cells in Marfan syndrome and set the stage for novel approaches to therapies.”

~Craig T. Basson, MD, PhD, Chair, Scientific Advisory Board, The Marfan Foundation

 Laboratory team of Hiromi Yanagisawa, MD, PhD (center) – Japan

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Community Member Takes the Stage to EDUCATE OTHERS ABOUT MARFAN SYNDROME

Community member Buddy Benge was invited to tell more than 10,000 associates at Edward Jones about his journey with Marfan syndrome as part of Heart Awareness Month in February. Buddy, who is head of Human Capital Insights for the company, kicked o ff the educational event and was able to speak openly about his condition including his family history, his stroke and open-heart surgery, and provide vital information about Marfan syndrome to the audience. “I received such an outpouring of support and love from my coworkers afterwards,” said Buddy. “So many of us struggle with the hidden part of Marfan syndrome that often we don’t open up to let people in and know that we’re fighting this fight. It’s so important for us to share and let others to know the symptoms.” Family History Leads to Diagnosis “My journey with Marfan starts with my family, and some tragedy,” said Buddy. “We had always suspected my father of having the condition, but it wasn’t until January 2007 that we learned for sure.” New Year’s Day 2007, Buddy’s father passed away due to an abdominal aortic aneurysm dissection at the age of 55. There was a family history of retinal detachments, greater than average height, and the common musculoskeletal issues associated with Marfan syndrome, but Buddy wasn’t diagnosed until five years later. “I had developed a lazy eye that worsened, so I visited an ophthalmologist who suggested I see a retina specialist and an expert in Marfan syndrome, Dr. Alan Braverman,” said Buddy. “I remember when I visited Dr.

 Above: Buddy, center, with colleagues from Edward Jones Left: “Hurting but feeling grateful” after surgery in 2022

Braverman, he instantly knew I had the condition. He was so comforting and really helped me understand so many things about my own personal history that I had never pieced together.” Getting Connected with Community After being diagnosed in 2013, Buddy joined a Facebook group for Marfan syndrome to learn more about his condition and connect with others like him. “It was so eye opening,” said Buddy. “First, so many people looked just like me. Secondly, it gave me comfort to know that there was such a large support group. Buddy and his wife became more involved with the Foundation and, in 2018, they attended the St. Louis Heartworks Gala which is hosted annually by Dr. Braverman and his wife, Rebecca. Buddy and his family have supported the event ever since. “I had open heart surgery in 2022, and without the work of The Marfan Foundation, I really don’t know if I’d be alive today,” said Buddy. “I may not have started getting regular check-ups. I may not have been getting the echos and the CT scans that alerted Dr. Braverman to my aneurysm. Please, if you have Marfan syndrome, make sure you’re getting checked regularly.”

Marfan.org “

“As we take our medicine, and talk with doctors, our average life expectancy gets closer to normal, and that means we can accomplish our dreams and aspirations like others. Many of us bring so much to the world because of the struggles we overcome and the personal journeys of pain and sacrifice.”

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COMMUNITY IGNITES Marfan Awareness Month ES

In February, our Marfan community came together to share what they wanted the world to know about day-to-day life with Marfan syndrome, including through personal videos called #marfanrealreels that energized Marfan Awareness Month. These authentic stories about diverse experiences, spanning various topics and languages, resonated across the globe and were widely shared across our social platforms. One such video, shared by KeNosha Whitehead, featured her daughter Sky’s surgical journey and generated more than 8,000 views. “My four-year-old had her first Marfan syndrome related surgery,” detailed Nosha as her video

highlighted her daughter’s meeting with the doctor. “It was quite a recovery - surgical pins, walking boots, and pain meds - oh my. But witnessing her grit and resilience throughout the process was one of my deepest inspirations this year.” Beyond our #marfanrealreels, thanks to our community’s dedication, more than 63K (and growing) individuals learned to recognize the signs of Marfan syndrome through our informative infographics available in English and Spanish on marfan.org, which also provided life-saving resources in 25 languages. Throughout the month, our online community welcomed nearly 800 new social media followers, and we reached 417K people, generating over 753K impressions, predominantly driven by the #marfanrealreels outreach campaign. Our awareness month also encouraged our community’s creative side by featuring a t-shirt contest showcasing their artwork, with winning designs becoming popular additions to our online store. Additionally, Marfan Awareness Month received recognition in hometowns and states across America through community members receiving proclamations as well as on the National Health Council blog. As we look back on Marfan Awareness Month, we celebrate the collective e ff orts that propelled our mission forward. Together, with our community, we’ve expanded awareness, fostered inclusivity and acceptance, and made an impact.

More than 30 #marfanrealreels videos were submitted during Marfan Awareness

Month. Youcan watch them on our social media channels or view themonour YouTube channel.

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FAMILY’S TOY DRIVE Brings Awareness & Happiness to Patients

Trying to navigate medical care amid a diagnosis of a rare genetic aortic and vascular condition can be overwhelming, especially for new parents. Such is the case with Maria and Jason from North Dakota, who faced unexpected challenges when their son, Jameson, was diagnosed with neonatal Marfan syndrome four years ago. Despite the initial shock, they dove headfirst into learning about the condition and advocating for Jameson's care. “We went down this rabbit hole of learning about Marfan syndrome,” said Maria. “It was just a really dark and scary period.” After having a bad experience with a doctor who didn’t know much about the condition, the parents made it their mission to research so they could be knowledgeable before going to future doctor appointments. Carrying a six-inch thick binder, they became advocates for their son’s care. Jameson now sees an experienced expert medical care team. During Jameson’s many hospital stays, Maria and

Jason noticed how even small gifts brought by hospital staff could brighten his day. “It really changed the aspect of being in a hospital,” explained Maria. “It would help take away the scariness of the procedures and staff changes that needed to occur for his care. These little gestures brought him so much joy, not only for him but for the nurses and us.” Inspired by this, they decided to give back by organizing a toy drive for other hospitalized children with a secondary goal of spreading awareness of Marfan syndrome. With the support of Jason's company and local media, they collected over 700 gifts to distribute to hospitals and organizations serving children with medical needs, including Sanford Children's Campus in Bismarck, ND, Sanford Children's Southwest Clinic in Fargo, ND, and Mayo Clinic Children's Center in Rochester, MN. They also dropped off additional donations at the Ronald McDonald House in Rochester. Maria and Jason didn’t stop there; they became a source of online support for families worldwide, sharing their experiences and offering advice on navigating the challenges of raising a child with additional medical needs. “It’s important to reach out for help and join the support groups and The Marfan Foundation’s social media pages,” advises Jason. “Do your research and get second opinions…third opinions. You need multiple opinions and doctors who all work together.”

 Above: Jason, Maria, and Jameson dropped off gifts with staff from Sanford Hospital in Bismarck  Right: Jameson’s family visits a wheelchair accessible waterfall in Minnesota when they have doctor appointments nearby

Lerman Hospitality Program Brightens Hospital Stays Jameson’s family’s generosity and giving spirit is similar to that of a family of long-standing Foundation supporters: the Lermans. If you know a child or young adult with an upcoming stay in the hospital, the Foundation’s Sydney Lerman Hospitality Program will provide age-appropriate gifts to children and young adults to lift their spirits. Learn more and submit a request at Marfan.org/lerman-program . You can also donate to this volunteer-led initiative on the web page.

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Friends Unite to Educate Community

Kristen and Christy, from Huntsville, TX, formed a quick bond after learning their teen boys shared the same rare medical condition, Loeys-Dietz syndrome (LDS). Wanting to bring their community together and shed light on LDS, they teamed up to organize a volunteer-led walk in Huntsville to benefit and support the Houston Walk for Victory, which was held on the same day. Kristen and her 17-year-old son Carson, who was diagnosed with LDS in 2021, first

★ A Fun, Educational Event Pooling their resources with help from the Foundation’s Walk team, Kristen and Christy pulled o ff a successful event. Over 90 supporters, including friends and

family members, gathered at Kristen’s mother’s house for a day of community and awareness. The event featured a one mile walk, games, and music. Attendees also took part in an educational multiple choice quiz about Loeys-Dietz, with prizes for participants. Answers were found on laminate fact sheets hung around the yard. “I always try to be positive, so I was concerned some of the information on the quiz was too negative,” said Kristen. “But you can’t hide from the truth, and sharing the signs and details can save a life.” ★ Inspiring Others to Make an Impact Kristen and Christy hope their e ff orts will encourage others to take action to spread awareness and foster community spirit. For people who may be thinking about hosting an event, Kristen advises to start small. “Don’t get yourself overwhelmed trying to host a grand event,” she said. “Have a simple plan - you can always add to it - and recruit people to help. Most importantly, make it fun, create excitement, and help create more awareness!” CONNECT WITH COMMUNITY Join us for an upcoming Walk for Victory! June 1 : NewYork

learned about the Houston Walk for Victory from their cardiologist, Dr. Shaine Morris. They created a team and drove over an hour to attend last year’s walk. Despite their e ff orts, turn-out for their team was lower than expected, prompting Kristen to think about organizing something closer to home. “I was looking for ways to get Carson connected and make new friends,” said Kristen. “We were excited to have a team, but so many couldn’t make it the day of the walk. That’s when the idea hit me that I could plan a walk in my hometown.” ★ Close Connections In 2023, Kristen learned that another student, Cyle, who went to same school as her son, also had a connective-tissue condition. She immediately reached out to Cyle’s mom, Christy, with support and materials, including a bag filled with information from the Foundation’s 2023 conference in Chicago. The moms quickly formed a supportive bond over parenting sons with the condition. Kristen soon asked Christy to join her to organize a walk in Huntsville in conjunction with the 2024 Houston Walk for Victory. “We come from such a small town with a school of about 450 kids. It was unbelievable and what were the chances?” Christy said. “I thought, our community has two kids - we need to do this.”

June22 : Iowa (Des Moines) June23 : Michigan (East Lansing)

June2 : Boston June8 : Chicago June8 : Pacific Northwest (Portland)

June 15 : Milwaukee June 15 : Philadelphia

View all Walk for Victory events at Marfan.org/walk .

If you are interested in starting a fundraiser that unites your community and spreads awareness, we can help! Please contact Kim Huddleston, Senior Vice President of Development, at khuddleston@marfan.org.

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Living Better with Marfan, LDS, and VEDS Around the World: The Foundation’s Outreach to the Global Community

This year, we are taking our one-day symposiums to Europe with partner organizations to help empower people living with Marfan, Loeys Dietz, and VEDS outside the United States’ borders. While our global community always has access to our virtual programming, such as webinars and online support groups, an in-person educational event provides the opportunity for connecting with others – both for laypeople and experts. Our one-day Symposia on August 25 in Oslo, Norway, and August 31 in London, England, feature medical experts from Europe and include members of the Foundation’s Professional Advisory Board. Anyone from around the globe is invited to make the trip. Registration is required, but there is no fee. Details can be found at Marfan.org/ international . “We are proud to collaborate with The Marfan Foundation to host the international patient day in London,” said Jared Gri ffi th, Founder and CEO of Annabelle’s Challenge, the leading charity for VEDS in the UK. “This event is a unique opportunity for patients and families who are touched by VEDS, Loeys-Dietz, and Marfan to meet others with these conditions, share experiences, and form lasting friendships.” “We at the Marfan Trust are excitedly anticipating our joint in person patient symposium with the Foundation,” said Victoria Hilton, who handles communications and the helpline for the organization.

“This rare global gathering of like-minded charities and medical experts collaborating in perfect partnership will empower patients with the most up-to-date advice, while o ff ering a chance for people to mix, mingle, and find friendship.” These Symposia in Europe occur the same week as researchers on aortic disease gather in Norway for Tromsø Aorta 2024, a combined meeting of the GenTAC Alliance, a division of The Marfan Foundation, and IRAD, the International Registry of Acute Aortic Dissection. Learn more at Tromsoaorta2024.com . Foundation Expanding Spanish-Language O ff erings The Foundation is planning a Spanish-Language Symposium, “Living Better with Marfan, Loeys-Dietz, & VEDS” on October 26 in Puerto Rico. The speakers are from the U.S. mainland and Puerto Rico. Like our other symposia, this event will arm people with the information they need to better take care of themselves and their loved ones and give them the opportunity to talk with medical experts and other people on similar medical journeys. Registration is coming soon.

Save the Date: Fourth Spanish-Language Summit is scheduled for January 25, 2025. Registration for this virtual educational event is coming this Fall.

Scan to view all our international events.

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Foundation Helps Netherlands Woman find Global Community

As the Foundation expands its programs internationally, the importance of sharing resources and connecting community becomes more evident. Such is the case with 20-year-old Yvonne from the Netherlands, who has Loeys-Dietz syndrome. She used the internet to learn new information about her condition and meet others like her. Now, she is bringing people together in her own community. “I quickly figured out The Marfan Foundation in America is huge!” said Yvonne. “I made connections with people my age. I also was able to attend some of the educational webinars o ff ered by the Foundation. I’ve been able to learn so much.” Yvonne recognized the need for community among young adults with similar conditions in her country, so she organized an annual gathering. She has also been involved with the Marfan Europe Network and attended an international patient meeting in Belgium in the last year. “It was amazing being in Antwerp with people from all over the world who have Loeys-Dietz,” she said. “I was able to talk to so many amazing people and learn a lot of new things about LDS, especially from the doctors who answered our questions. The best part was getting a picture with Dr. Bart Loeys and Dr. Hal Dietz.” Yvonne is looking forward to more international meetings to share information and raise awareness. She also hopes more people will see the therapeutic benefits of connection both in person and online. “We are all going through our own journey, but you don’t have to do it alone,” she said. “Sometimes just talking to someone who understands can make a big di ff erence.”

 Yvonne and her mother, Inka, with Dr. Bart Loeys (left) and Dr. Hal Dietz (right)

Launches New International Support Group LDS Connect International is a new virtual support group for people living with Loeys-Dietz syndrome, as well as parents and caregivers. “LDS Connect International provides a space where individuals a ff ected by Loeys-Dietz can find understanding, comfort, and guidance regardless of location or healthcare environment,” said Stacey Watson, director for the Loeys-Dietz Syndrome Foundation. “We hope that by bringing our international community together in a casual environment, they can build connections and share knowledge to improve their quality of life.” This group is intended for community members living outside of the United States and is conducted in English. The group meets on the 4th Monday of each month at 2 pm EST. There is no obligation so please try it out! Sign up today at bit.ly/LDSconnectinternational .

Three years ago, the Foundation hosted its first summit for people who speak Spanish and live with genetic aortic and vascular conditions. Our commitment to serving our Spanish-speaking community members has continued to deepen connections, enhance education, and provide support. In February, the Foundation o ff ered its first Spanish-language virtual support group called Conexiones. The group is lead by sta ff member, Kathleen Bolton, who is bilingual. “Conexiones fosters a supportive environment where participants can exchange information, coping strategies, and emotional support in their native language,” said Kathleen, coordinator for the support group and Help Center Manager. “There is no cost and no obligation so everyone should register for one to try it out.” Conexiones meets monthly via Zoom on the third Wednesday. Sign up today at Marfan.org/calendar/conexiones. New Support Group Expands O ff erings for Spanish-Speaking COMMUNITY

 Kathleen (3 rd from left) at the 2024 Houston Walk for Victory with Stacey Watson, director of the Loeys-Dietz Syndrome Foundation, Helaine Baruch, chief philanthropy officer, and Ryan Rodarmer, director of The VEDS Movement ¡Únase a nosotros para nuestro nuevo grupo de apoyo impartido en español - Conexiones! El grupo se reúne cada tercer miércoles del mes a través de Zoom. Regístrese hoy Marfan.org/calendar/conexiones.

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Percussionist RocksOn! BELLASERA

When Bella Sera was growing up in Houston, Texas, she was tired of other kids calling her derogatory names due to her Marfan-syndrome-related tall stature, so she told them to call her “an Amazon” instead. “If you’re going to call me something related to my height, call me an Amazon,” she said. “I took it as a big compliment to be called something that related to Wonder Woman.” That boldness and positive outlook has taken Bella on a journey to become a rock drummer, and a bit of a Wonder Woman in her own right. Bella was not cleared for contact sports or trampolines as a child, so she took a di ff erent route inspired by her uncle who was a drummer also living with Marfan. “I started drumming because I couldn’t do the other activities,” said Bella. “Thankfully, that was one of the things I could do. My doctor was like, ‘Of course you can drum. Why not?’” For Bella, drumming is its own kind of sport, “I’m a super high-energy drummer, I move my whole body when I play,” she said. The necessity to seek alternatives to typical after to graduate with a Bachelor of Science degree in sound recording and aspirations toward a master’s degree in jazz from Texas State University. Being Realistic, Practicing Self-Care Bella has learned to work around her physical limitations by being realistic about them and practicing self-care. On doctor’s advice, she never lifts more than 10-15 pounds. On tour, that means asking for help when moving equipment. She also pays attention to her body. To handle the rigors of touring, Bella sticks to a routine and physical activity for which she is medically cleared. “I make sure that I still go to the gym at least three times a week, but I don’t push myself,” she said. “I do very light cardio and very low-weight toning exercises.” school activities due to Marfan syndrome has led her to where she is today – ready to go on a multi-state tour with her band, Tough on Fridays, and poised

“Learn to show o ff what makes you, you, and be proud of it. There’s only one version of you, and that is what makes you so gorgeous.” ~Bella

Be Yourself, Love Yourself Bella is on a mission to show younger women and girls with Marfan syndrome that you can smash through stereotypes and expectations to build your own presence. As part of an all-women rock band and as a percussionist, she’s happily breaking through societal boundaries. “People who don’t have Marfan syndrome, when you’re a kid you do football, cheerleading, dance class, karate,” she said. “I feel like a lot of those options are often closed o ff for people with Marfan, so we get funneled into these more unique activities. That gives us an advantage when we learn something that nobody else gets to know about.”

Learn more about Bella by checking out her Instagram b_the_drummer and her band’s site.

As always, before taking part in any physical activity, it’s important that community members consult with their personal expert healthcare providers.

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FOUNDATION PARTICIPATES IN NIH Rare Disease Day

Representatives from The Marfan Foundation attended the National Institutes of Health (NIH) Rare Disease Day 2024 in Bethesda, MD on February 29, 2024. This collaborative and informative event was aimed at addressing challenges and advancements in the diagnosis and treatment of rare diseases. Attendees from across the country included researchers, clinicians, industry representatives, patients, advocacy groups, and policymakers, all united in their commitment to improving the lives of individuals a ff ected by rare conditions. Presentations and discussions focused on the latest research findings, innovative treatments, and emerging technologies that hold promise for rare disease diagnosis and management. Presenters highlighted the importance of patient engagement and interdisciplinary collaboration toward driving progress in rare disease research. Key topics addressed included strategies for extending diagnostic and disease-management outreach to individuals residing in rural communities, leveraging artificial intelligence to uncover potential treatments through drug repurposing, and recent approvals and advancements in gene therapy. There was also an emphasis on the unique challenges faced by individuals living with rare diseases and their families, including access to a ff ordable care, diagnostic delays, and the need for authentic disability representation in media. Overall, the NIH Rare Disease Day 2024 meeting served as a platform for fostering collaboration, sharing knowledge, and renewing commitment to advancing rare disease research and improving patient outcomes.

 Foundation representatives: Josephine Grima, PhD, chief science officer, Lauren May, MPH, director of research, Stacey Watson, director of the Loeys-Dietz Syndrome Foundation

Plan for the Future, Today: New Free Resource

The Foundation aims to empower members of our community to enjoy the best quality of life possible. We hope to help community members gain the additional peace of mind that comes with knowing future plans are set. FreeWill is a free intuitive online tool designed to simplify the estate-planning process and help make informed decisions that reflect an individual’s legacy and values. FreeWill o ff ers a straightforward, cost-free way to ensure your

estate plan is in place, enabling users to: • Clearly outline their future intentions

• Ensure loved ones and the causes important to them, like advancing research and support for people living with genetic aortic and vascular conditions, are well taken care of • Gain the peace of mind that comes with having a secure plan

Learn more or get started with FreeWill at freewill.com/Marfan.

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Spring 2024

Adventure* Fun* Friendship Register for Camp Victory 2024! Whether it is the warmth of the fire, the accomplishments of trying new activities, or staying up at night sharing stories, a camp experience is like none other. Come make lasting memories and friendships at the Foundation’s Camp Victory! Our camps o ff er community members a safe environment to learn independence, have fun, and expand horizons with medical supervision and accessibility. This year, we will be hosting Camp Victory for Kids and Camp Victory for Families in Georgia and California, providing opportunities for kids, teens, and families to gather from across the country and beyond. Camp Victory for Kids is designed specifically for children ages 7-16 with Marfan, VEDS, Loeys Dietz, and other related genetic aortic and vascular conditions. Siblings are welcome, too. Camp Victory for Families is designed for the entire family (children ages five and older and adults) to have fun, enjoy activities, and meet other families with similar experiences. “We love Camp Victory, and all the sta ff and counselors,” said Caitlin, whose son, Rowan, has attended Camp Victory for Kids in Georgia for the past several years. “We have never had a concern leaving our son who has Marfan syndrome even though we live states away. We can't wait to hear his stories and love the connections he makes with kids all over the country.” For more information about all camps, including important deadlines, answers to the most common questions, scholarship applications, and more, visit our camp web page, Marfan.org/campvictory .

“I love Camp Victory! Everyone is so supportive, the food is amazing, and it’s so much fun! My favorite activities are archery and swimming. I made so many friends there. I can’t wait to goback.” ~Rowan

Georgia Camps Camp Victory for Kids

★ July 21-26: Camp Twin Lakes, Winder, GA Kids camp registration deadline is June 23 Camp Victory for Families ★ Sept. 20-22: Camp Twin Lakes, Winder, GA Family camp registration deadline is Aug. 23 California Camps Camp Victory for Kids ★ Aug. 4-9: Sierra Nevada Journeys, Portola, CA Kids camp registration deadline is July 7 Camp Victory for Families ★ Nov. 8-10: Pali Retreat, Running Springs, CA Family camp registration deadline is Oct. 11

Scholarships are available. Space at all camps is limited, and registration is on a first-come, first-served basis. Register today! See what camp has to o ff er!

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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 December 1, 2023 – March 30, 2024. 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

William Henry Floyd, IV Noelle Flynn David Golder

Claire Moore Janaan Moore Madeline Moore Lynda Moylan Robbie Mudroch Danny Murphy Christy Nath Phil Newsome Theresa Newton JonNiemi JohnNosta Kessler Ogden Reeves, Grant, & Jen Olson Dr. Kayla Pariser Victoria Pawar Denise Pentecost Jodi Pentecost JohnPerna Melissa Petrella Elizabeth Petty JohnPew Jameson Pitcher Ellen Podell Kendall Podsen Sophia Isabella Pollaro AnnePower Nicole Reiner River Reiner James Richardson Emilio & Xaeed Rico Amanda Rivera Ryan & Lindsey Rodarmer MaxRomero Merrick Ross Pete Schramm Carlee Schwartz Terence Seery Karen Marie Selvaggio LillyShaw Malakh Shrestha Spencer Skrzypiec Evan Smolen Amanda Sonquist Christopher Springer Mila Stamer Leo Strangstalien Jacki Sullivan Norma Surmon Vickie Suzanne Danyel & Matthew Tacker Brinley Taylor TeamJames Seth & Analise Tennant NickTeune The Professional Advisory Board Jason Theriault Tammy Thomas Samantha Thomas Kayley Tigges Jim Towns & Family NoahTran Nishani & Manisha Vakharia Erica & Matt Volna Brooke Pulliam Dr. Reed Pyeritz Guidry Ramoin Aubreye Reddell

Michael Weamer Rachael Weinberg GaryWeiss Alexandra Weygand Emily Wheeler HenryWied Averie Williams Sarah A. Williams Connor Wilson

Mary & Billy B. Essers Beverly Feinstein Daniel Fess

Ilana Mysior PaulaNeil Joseph Neustadt Cathleen Nilles Otto Nitschmann KatieNix Anythony Nocella Rodney Oberle Shirley Osman Daniel Miriti Pacheco Christopher Paulsen Cynthia Payne Sunny Pellone Delores Peterson Josefina Piape Jared Hunter Pinson Vicky Prager

INHONOROF

Nathan Adolf All Marfans Folks All My So California Walk Friends Cameron Allen Nadia Allmon Micah, Connor, & Audrey Amdur-Clark Brandy Andrews Caroline Arpin Angelo Asimakopoulos CelinaAu Filip Avramovic Christopher Baier Joe Bailey, Jr. Mary Bailey MarenBain NoraBaker Caroline Bange Charlotte Basurto-Olsen Curtis Bates Hunter Beckholt Ricardo Belchior Debbie Berkowitz Sydney Bitterman Jerry Bluestein Christopher Blum Elliott Bobbe Dr. Juan Bowen Oliver Bowra-Davis Braverman Family Cyle Burkhalter Quade Bywater Dr. Anthony Cafarelli & HoagTeam Austin Carlilse Emilee Chambers Avery Clark Kasie Clark Phillip Clark Dani Beth Clements LeoCole Judi Consigli Caitlyn Cooke Joanna Nicole Cordero Dominick & Cecelia Corso Heather Cottier Charlie Cowden CoxFamily Luayne & Derrick Crandall Michele Cripps Dr. Ralph Dacey Oliver Davis Sofia De la Garza Sofia Maria De la Garza Karen DeCoursey Earl Devaney Brianna DeVincentis Doehring Family Haley Dostalik LaceyDray Gabrielle Earnhart Callie Efurd Celina Emanuel

Heather Gooch Isabella Green Keegan Gregory Amy Grimshaw Hadley Gunn Creasie Hairston Connor Hajj Toby Hamilton Shelley Hartman RyanHealy Sherry Heldt Aaron Henry Lincoln Hervatin Carson Hester Jace Holmes JohnHoran Beckett Hotchkiss

Eric Fitzgerald Myron B. Ford

Olasupo Fowowe, III Raymond J. Frenz, Jr. Grace Friend BryanFunk Marlene Gallahan Julie Goodman Rachel Goodman Andrew Gross Shawn Grunberger Roberto Guerra Linda Hacker SaraHall Jane Harris Rod Haskins Brad Havard Christine Hawley FredHearn Richard D. Heim Marilyn Higdon Willa Hilton Walker MaxHommel David Hufnagle Tonee' Huggins Eileen Ilberman Mike Ireton M ittens Ann Dolesh Jarosz Michael Jensen Renee Jessup Bill Johnson Carl & Helen Jones Michael Jordan Jerrod Jung Jill Keeper-Sheiner

Anna Witiuk Katie Wright MJYang Steph Yasick Heather Young Ashley Zarate Cynthia Zarate

IN MEMORY OF

Frappa Quandt Michael Reading Lucinda Reeves Briley Reiland Ann Reinking TomReis

Homer Ailstock Dr. Jamal Alkhatib Virginia S. Anderson Sherri Asche Wayne Ayscue David Barry Charlotte Mary Ruth E. Basurto-Olsen Lauren Bates Naddy

Chris Ikonohou Dayna Isensee Mike "Mick" Jackson Christian D’Angelo Je ff ries Gail Jehan Cassie Jennings Alix McLean Jennings Ivy Johnson Kai Johnson Christian Michael Jones TimJoyce CarynKau ff man Brady Klefman Dawn Knowles Matthew Korochik Kozel Family Nicole Kramer Rebecca & Sarah Kryger Daniel Keyes Jaelyn Kirby

Regan Remulla Jonathan Reyes David Ricca Daniel, Shirley, Andrew & Janet Rigney Lisa Ritell-Milton Brock Robertson Patricia Roberson Luis Daniel Rodriguez Montesino

Michael Beardslee Julie Beauchamp Scott Bergkamp

Je ff Berkowitz Jerri Lynn Bitar JackBlack David Braverman Leonard Pennington "Penn" & Jan Broecker Jeanna Brown Ayers Louie Bryant Jennifer Bu ff one Brody Bullock LeahBurke Parker Burleson Gabrielle Cannistraci Dennis Capio Jorge Alberto Castellanos SarahCayo Aileen Cheng

Maryann Roney Claudia Roper Michael Rosales Pam Scanlon Jerry Schultz Spencer Sellas William Selvitelle Jeremy Semano ff AvaShaw Michael Shaw Leonard Sheiner Brian Singletary Libby Sparks

Julie Kurnitz Gene Kutner James "Ron" Laccabue Darryl Langshaw Jonathan Larson David & Brothers Laufer Jack Laufer Alexa "Lexi" Lawrence April Leaman RoyLee Jack Lemmer Sandy Lichtenstein Melissa George Lindland MaryLobo RudyLuna Stephanie Mahnken Norma, Harold, Joshua, David, & Richard Makano ff Debbie Marcus Frank Marin

BenKuehn FoxyKusin SaraKyle Dr. Ronald V. Lacro Jacobi La ff erty Tomas Lagos Jane Laufer Tomas Lagos Lee Sydney Lerman Sinclair Li Dr. David Liang Efrat Lifshitz

Casey Sprouse Kimberly Stern Norma Surmon Michelle & Bodhi Swindle Tommy D. Tant Lauren Ovelgonne Tenney Luke Terrell Jason C. Theriault To All Those Lost Tony & Annie Toy Angela Volan Jennifer Volpe Emory Wakat Robert Walker Dr. Robert B. Wallace Dolores Walsh Laura Wascha Carolyn Weinhold Alana Wesley Cheryl Williams Nina Wilson Denise Winter Martin Wolpers Christopher Yasick Elizabeth Steady Young Bart Zybura

Priscilla Ciccarello Steven Ciccariello Jordan Myles Colon Nancy Conger Chyla Connell Richard Coren Callie Cornely Heather Cottier George Covington, Jr. Blaise Martin Dafoe Lawrence D'Apice DougDavis Sherry Davis Dennis DeCoursey John DeMasi Ralph Devito Beth Dillon Graham DiMartino J. Doehring Je ff rey Duchaineau

Daniel Lugano Jean MacLeay Eleanor Magel-Lubka Talulla Maher Isabella "Bella" Marin Grant Martin Peri Masterman-Graybill

Debbie Martin Norman Martin Albert Matsuura Erica Mayton Scout McCauley Margaret Meagher James Daniel Meckler Kimberly Merkel Conner Metz Yvonne Micholas HuckMoore

Peyton Matthews Patricia McCabe Taborski McClellen Ainsley McFarland Bert Medina Cannon Medina Camila Melero Desiree Mendoza Charlene Meyers Bailey Milburn Meredith Mischner Bryleigh Mons

Evan Esparza Rahel Eyassu Tommy Farley Tyler Farley Feinstein Family Eric Filipkowski Mia Fleener

Clifton Durand Gertrude Elliot AnnaEllis

George Wang Brandy Ward Adam Warren Stacey Watson

Michael Enbar Peggy Encinia Everett William Erwin, Sr.

Andrew Morrell Pam Moultrup

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Spring 2024

22 MANHASSET AVENUE PORT WASHINGTON, NY 11050

The Marfan Foundation’s Global Conference ► The Marfan Foundation ► Loeys-Dietz Syndrome Foundation ► The VEDS Movement JUNE 17-22, 2024 Marfan.org/Conference