Connective Issues - Winter 2020

Focus on Research & Progress Winter 2020

2019 RESEARCH GRANTS

SUDDEN CHANGE SITUATIONS

VOLUNTEERS FOR VICTORY

AN EXCITING TIME IN THE LIFE OF THE FOUNDATION

The Marfan Foundation’s mission is to save lives and improve the quality of life of individuals with Marfan syndrome, Vascular Ehlers-Danlos, Loeys-Dietz, and other genetic aortic conditions. 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.

When we look at the numerous ways in which Marfan research has positively impacted the lives of our community, it’s hard to believe that 40 years ago the outlook was so different. Thanks to the dedication of many researchers, their institutions, and individuals like you, this generation will never know what it was like without many of the life-saving techniques, medications, and therapies now available to our community.

What started as Marfan-focused research in 1989 opened up discovery not just for the Marfan community, but also for those related conditions that have been identified – some as a result of Marfan research. In this edition of Connective Issues , you can read about Peter, who points to Marfan research for improving his life with Loeys-Dietz. We have also recently launched new programs and services for the Vascular Ehlers-Danlos community, through our new VEDS division, for a community previously underserved. Thanks to medical advances – including new drug therapies, innovative surgical techniques, and better diagnostic testing – people are living long and successful lives. That opens up the need for us to focus on quality of life issues – so people who are living longer, can live a full and happy life. For the kids in our community – who have the advantage of an early diagnosis and early treatment – this means normalizing their childhood by providing a camp experience that is safe. Camp Victory is an area of progress where we see so much of this spirit come to life. You can read more about that from Liam’s perspective in this edition, too. It takes a community to push forward with the amount of progress we’ve seen over the last 40 years. It will take a community to see the next advances through. In another generation, they’ll look back and wonder how they ever lived without something that we will initiate with research today. We’re so grateful to have you with us as we march toward victory and we can’t wait to see what progress happens as a result of your continued support.

Learn more and get involved at Marfan.org.

CONNECTIVE ISSUES WINTER 2020 VOLUME 39 | NUMBER 1 Connective Issues is the newsletter of The Marfan Foundation. It is published three times per year.

Inquiries should be addressed to: Publicity@Marfan.org

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

Sincerely,

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

Michael Weamer President & CEO

ON THE COVER: Members of Team Arnold, Katie Arnold (17) on left, dog Charlie, and Natalie Arnold on right (10) participating in the Indiana Walk for Victory.

Photo credit: Members of the Marfan and related conditions community

AORTIC DISEASE AWARENESS DAY

Powered by The Marfan Foundation

SEPTEMBER 19 | ADAWARENESS.ORG

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RESEARCH FOR PROGRESS Research has always been at the core of our fight for victory. Benjamin Landis, MD, Indiana University, recipient of a 2019 Early Investigator grant from the Foundation, and Enid Neptune, MD, Johns Hopkins, recipient of a 2019 Faculty Award grant from the Foundation, share the goals for their current research.

Dr Landis’ study is Investigating the Ubiquinone Biosynthesis Gene COQ8B in Thoracic Aortopathy. He explains:

Our work seeks to identify genetic factors that influence the severity of aortic disease. We have found preliminary evidence that COQ8B may be one such gene, so we are seeking to define the functional role of COQ8B in the human aorta. Clinically, we hope this work will ultimately lead to development of new genetic testing strategies that improve our ability to predict an individual patient’s risk for having progressive aortic disease and dissection. We could then optimize clinical management decisions for individual patients accordingly. In addition, understanding the biological processes by which genetic factors influence the severity of aortic disease may help to find new targets for drug therapies to treat aortic disease.

Dr. Neptune’s study is The Role of Oxidative Stress in Marfan Lung Injury. She explains:

Shortness of breath, reduced exercise capacity, impaired lung function, bullous lung disease with pneumothorax (lung collapse), and sleep apnea are all associated with Marfan syndrome and often reflect lung specific manifestations of fibrillin-1 deficiency. A strong focus of my laboratory is a better understanding of the mechanistic basis of these manifestations and the determination of the prevalence and burden of these symptoms and findings. The long-term goals of this work are to increase the awareness of lung impairments in Marfan syndrome and to develop useful strategies and interventions that will promote durable lung health.

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2019 RESEARCH GRANTS In October, the Foundation’s annual research grants were announced. The Foundation awarded $775,000 to eight physicians/scientists, bringing the total amount of currently funded projects to $1.5 million. Among the 2019 grants are two fellowship grants, one early investigator grant, two clinical research grants, and three faculty grants.

The projects being funded this year address issues that affect people with Marfan syndrome, thoracic aneurysm syndrome, and hypermobile Ehlers-Danlos syndrome. They are in the areas of exercise, lung function, gastrointestinal issues, and cardiovascular disease. “The grants we funded this year reflect the Foundation’s commitment to advancing the understanding of issues that affect the quality of life of people with not only Marfan, but also related conditions. This is a continuing trend from last year, when we funded a study on Vascular Ehlers-Danlos syndrome, as well as one on neonatal Marfan syndrome,” said Josephine Grima, PhD, the Foundation’s chief science officer. “The high quality of proposals we received from early investigators to seasoned veterans gives us great hope for the future of scientific discovery that will inform the diagnosis and treatment of genetic aortic conditions. We are gratified that our research grant program is having this impact.” In addition to the newly awarded research grants, the Foundation provided another $750,000 this year in research support for the Aortic Valve-Sparing Operative Outcomes Study, the Marfan and Related Conditions International Patient Registry with Backpack Health, as well as funding for 13 researchers who were awarded multi-year grants in the past two years. For more details about this year's grants, visit: Marfan.org/2019ResearchGrants .

2019 RESEARCH GRANTS 2019 Victor McKusick Fellowship Grants

• Aline Verstraeten, PhD – University of Antwerp, $100,000 2-year grant • Abhijnan Chattopadhyay, PhD – University of Texas Health Science Center at Houston, $100,000 2-year grant

Early Investigator Grant • Benjamin Landis, MD – Indiana University, $75,000 2-year grant

q Health fair eye exam at the 2019 Annual Conference.

Faculty Grants • Enid Neptune, MD – Johns Hopkins University, $100,000 2-year grant • Dieter Reinhardt, PhD – McGill University, $100,000 2-year grant • Irani Kaikobad, MD – University of Iowa, $100,000 2-year grant Clinical Research Grants • Joanne DiFrancisco-Donoghue, PhD, RCEP – New York Institute of Technology, $100,000 2-year grant • Shaine Morris, MD, MPH – Baylor

College of Medicine and Texas Children's Hospital, $100,000 2-year grant

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On an early fall day in 2011, Allen Tucker was living his dream. After a successful high school football career, Allen earned an opportunity to line up as a defensive lineman for the Mississippi State Bulldogs as a freshman. At 6’4” with quick feet and long limbs, 18-year-old Allen looked uniquely built for his position. Then there was a situation where he couldn’t catch his breath. And then there was another. Eventually, at his mother’s urging, he sought testing. Later that fall, Allen was diagnosed with Marfan syndrome and his time as a football player was over. It seemed that, without playing football, Allen’s story read like a loss with a sad ending. “Immediately my thought was, what am I going to do now? My whole life was football,” said Allen. “Getting to play at Mississippi State was my dream. I had no plan for after that.” It turns out that Allen’s story wasn’t over when he turned in his football pads. “In the same instant that Marfan crushed the only dreams I ever had, it created a new dream that I am currently living out today,” he said. Allen's father, Larry Tucker, passed away in 1994, from complications related to Marfan syndrome. Allen was just SUDDEN CHANGE SITUATIONS ALLEN TUCKER

a year old. Though he carried some of the tell-tale signs of Marfan, none presented so strongly that it occurred to his family to have him tested. He became a celebrated high school athlete with promise as a defensive lineman. “It seemed like my height and build just made me a good match for football. Never did we think I had Marfan,” said Allen. People with rare conditions often feel the need to mature quickly in the face of a potentially life-threatening condition. Allen felt this personally and professionally, first as a newly-diagnosed young adult and, second, as he embarked on what was to come after playing football. Said Allen, “I had to decide that my life was way more important than the game. As obvious as that sounds, I “I had to decide that my life was way more important than the game. As obvious as that sounds, I didn’t yet know how to live with my diagnosis or without football.”

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didn’t yet know how to live with my diagnosis or without football. It’s tough to hear that you aren’t superman anymore.” Allen continued working with the Bulldogs from the sidelines as a student coach after his diagnosis. At the time, it was a way to stay connected to his teammates and the game, but over time, it has turned into an unexpected career path. “I would have never considered coaching had the opportunity not been presented to me after my diagnosis. It turned on my passion for impacting young men and teaching life lessons through a game. I was able to get a head start on the skills, knowledge, and connections required to be a coach at the highest level,” said Allen. His accelerated experience and maturity let him to a professional coaching role by age 24 in the Southeastern Conference (SEC), one of the most decorated conferences in NCAA football. Then, at the age of 26, like many with Marfan, Allen's aorta was in need of repair. Once again, Allen called up his mental toughness to help him persevere and thrive though the process. “Only you can get you through open heart surgery,” he said. “The physical limitations it places on you forces you to really see how mentally tough you are. I am forever grateful for that surgery because there is nothing in life that can shake me at this point.” Allen was back on the football field, coaching, three months after surgery, and the first day his physicians allowed it. Six months after surgery, he is planning ways to use his experience to improve the lives of other former athletes who have been taken out of competitive sports with a Marfan diagnosis. In a few quick years, Allen underwent enormous changes to transform from 18-year-old super athlete to 26-year-old super advocate. At any point during those eight years, Allen could have walked away. But it turns out he has a knack for navigating change for the better. “In football, especially in defense, we talk a lot about what happens in ‘sudden change situations,’” he says. “When the ball gets turned over, we have to dig our heels in and respond to adversity.”

Receiving a late diagnosis often results in a major change to a person’s life path. This can feel like a lot of doors closing very quickly, but Allen learned to keep his eyes open looking for those that opened because of his diagnosis. “You have to approach each day and activity a little differently than most people, but it’s not like you’ve joined the senior league. The best thing I do is surround myself with people who treat me the same as I was before the diagnosis,” says Allen. And that physical stature that his coaches had seen as ideal for college football? Now it gives him a platform to talk about Marfan syndrome and advocate for better athlete testing. Said Allen, “My size draws more attention and I am choosing to use that attention to create positive impact.”

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t Dr. Nicholas Kouchoukos flanked by Dr. Alan Braverman (left) and John Antes, president of Missouri Baptist Medical Center.

In the past three years, I have represented The Marfan Foundation at school nurse conferences in my state of Indiana. I have found the experience to be both fun and inspirational. When speaking with the conference attendees, it is encouraging to hear about those who either have heard of Marfan syndrome or have had children in their school or district with a connective tissue condition. School nurses are on the front lines in schools with our children. They can be a wonderful resource to not only advocate for our children, but also to potentially see and help diagnose a child (and family). These reasons alone make it worth our time to volunteer as representatives. By utilizing the opportunities available to us, such as school nurse conferences, we can spread awareness and strive to provide better care and support for those in our community. – Emily Chu, School Nurse Champion with Volunteers for Victory VOLUNTEERS FOR VICTORY

Dr. Nicholas Kouchoukos, a renowned cardiothoracic surgeon who has been a long-time champion for the Marfan and related conditions community, retired in 2019 after a 50 year distinguished career. Dr. Kouchoukos, who received the first St. Louis Heartworks Hero with a Heart Award, was honored in December by Missouri Baptist Medical Center, where he most recently performed thoracic and cardiovascular surgery. Speakers recognized Dr. Kouchoukos’ tremendous impact on the field of cardiac and aortic surgery, including his pioneering work in the development of many of the techniques currently used for complex aortic surgery. To further honor Dr. Kouchoukos, John Antes, president of Missouri Baptist Medical Center, made a $10,000 donation to The Marfan Foundation on behalf of the hospital. Dr. Kouchoukos asked Dr. Alan Braverman, a member of the Foundation’s Professional Advisory Board and Board of Directors, to accept the donation at the event. This donation adds to Dr. Kouchoukos’ legacy to the Marfan and related conditions community. Its impact will include a specially named scholarship to the Foundation’s Annual Conference. The Marfan Foundation is grateful to Missouri Baptist Medical Center for their support and especially to Dr. Kouchoukos for all he has done for our community. ADDING TO THE LEGACY OF DR. NICHOLAS KOUCHOUKOS

Become a School Nurse Champion or get involved with another Volunteers for Victory team at Marfan.org/volunteer

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Peter Donato is a fan of all things Boston. He’s also a regular volunteer with the Foundation and he lives with Loeys-Dietz syndrome. Peter will tell you that he’s a walking testament to Marfan research. This might sound odd considering Peter does not have Marfan, but he draws a straight line between the progress in Marfan research and the optimism he has for his life. “Without medical advancements and research, Loeys- Dietz wouldn’t have been discovered and the things I need to know about my condition wouldn’t have been figured out,” Peter says. Even a Marfan-specific clinical drug trial led to improvement in his treatment of Loeys-Dietz. “Everything from the treatments I use to the activities I do is impacted by research and progress that was made before I was even diagnosed,” he says. But the progress hasn’t stopped with Peter. Since getting his diagnosis and attending his first Marfan Annual Conference in 2006, Peter has been an active force in supporting others in the community. “Everything I do is to help people build connections,” he says. “I want people to see they aren’t alone, which is itself progress. Years ago, there was no such thing as a Marfan and related conditions community, but now we don’t need to figure everything out on our own.” The life-saving medical research supported by the Foundation has a profound impact on the entire genetic aortic condition community – whether someone’s diagnosis is Loeys-Dietz, Marfan, VEDS, or another related condition. Peter champions being part of this community because, as he’s realized, it’s a combination of medical advances and strong connections that lead to an improved quality of life. RESEARCH AND RELATED CONDITIONS “I want people to see they aren’t alone, which is itself progress. Years ago, there was no such thing as a Marfan and related conditions community, but now we don’t need to figure everything out on our own.”

q Peter Donato with his father, David, at a recent Marfan Foundation Annual Conference.

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Since the announcement of our new VEDS division in October, we have been busy developing programs and services for those diagnosed with VEDS (Vascular Ehlers- Danlos Syndrome) and their family members. NEW WEBSITE The division, now called The VEDS Movement, launched its new website – thevedsmovement.org – full of information and resources for those affected by VEDS, as well as physicians, on December 2. The website also provides ways for those affected to connect with others on the same medical journey, through support groups, annual conference, regional symposiums, and The Marfan Foundation Walk for Victory program. VIRTUAL SUPPORT GROUPS The Movement also launched four new support groups for the community: Coping with Loss, VEDS Parents, VEDS Connect, and Awaiting Diagnosis. These groups are intend- ed to provide both educational and emotional support for VEDS NEWS

p Left: Team VEDS at the Orlando Walk for Victory. Right: Joy Foote and Melissa East at the Orlando Walk for Victory.

those in the community, as well as provide an additional avenue for connecting with others living with VEDS. Katie Wright, director of the Movement, hosts VEDS Connect, and co-hosts Awaiting Diagnosis with our chief scientific officer, Josephine Grima. The VEDS Parents group is co-hosted by Jan Lynch, who is our on-staff nurse and director of the Help & Resource Center, and Abby DeLong, a well-known parent in the VEDS community who spends a lot of her free time helping individuals in the community. Our Coping with Loss group is hosted by Susan Leshen, staff licensed clinical social worker. TEAM VEDS Team VEDS has joined the Walk for Victory action! Team VEDS will be at each Walk to help create community and connect people with their “genetic cousins,” the Marfan and related conditions community. Head to Marfan.org/ Walk for all the upcoming Walk cities and dates. Melissa East, who lost her brother, Dave, to VEDS, participated in Team VEDS in Orlando. “Finding community changes everything. The symbolism of walking together, because no one has to walk this journey alone, is so powerful. That is the real victory,” said Melissa East, who was part of Team VEDS at the Orlando Walk for Victory in December. “We are so thankful to the Marfan community for embracing those with VEDS and welcoming them into their community with open arms. Together we walk, together we save lives.” Visit TheVEDSMovement.org for up-to-date information about VEDS, get help finding a doctor, and learn about participating in our events across the country throughout the year.

p L-R: Cathy Bowen, Fran Marin, Ramon Soria, and Rosaura Velazquez at 2019 Annual Conference.

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For all the medical progress that we’ve seen over the last several decades, one secondary benefit is the ability to now focus on quality of life. Camp Victory is one program that was designed with exactly that focus in mind. The kids and families who attend spend a few days each summer soaking up quality life experiences in a safe and adapted environment. Liam Nelson was 17 when he first attended as a volunteer. Liam can’t get enough of camp in part because of what it adds to his life, and now – as a counselor – because of the opportunity it gives him to help add to the lives of the campers and their families. Summer camp often means lots of activities that kids with Marfan and related conditions would typically not be able to try, leaving them either on the sidelines or left out entirely. Camp Victory, however, brings those activities to kids of every ability and adapts them so everyone can participate. “My first year at camp, I climbed a rock wall and all the campers and staff applauded. I was immediately in tears. I’d never had the experience of tackling an obstacle like that before,” said Liam. “Here, we can overcome things that we wouldn’t even get to try anywhere else.” The elements of community and adventure are such big pieces of a summer camp experience, which are also missing for a child with Marfan or a related condition who cannot attend a regular summer camp. According to Liam, these are among the most important benefits that Camp Victory offers to kids with genetic aortic conditions. “You don’t have to push yourself physically to get the benefits of a summer camp,” said Liam. “Just being in an adventurous space together solidifies a special kind of community for campers.” These opportunities are so impactful for kids that Liam has taken it upon himself to help more kids and parents alike find their way to Camp Victory. As a young adult with Marfan and an experienced camper, Liam is the perfect go-between to lead the way for kids and soothe the nerves of parents. “Camp is a place where kids can become more independent in ways that kids with genetic aortic conditions especially need. It’s also a time when parents can start to let go of their child in a safe place with people who can help them have the best experience,” said Liam. Children with Marfan and related conditions did not have this opportunity prior to the Foundation launching Camp Victory. “It’s a privilege and the result of advanced medicine that we are all finally able to focus on quality of life. Now we can talk about and develop the whole person,” said Liam. He added, “At Camp, we get to be people. Everyone there – we’re just people, not just the bodies we inhabit, that happen to be affected by Marfan or a related condition.” And that opportunity to just be a person may be one of the greatest gifts of progress we’ve seen so far. PROGRESS IS QUALITY OF LIFE

CAMP DATES & REGISTRATION CAMP VICTORY FOR FAMILIES • April 17 – 19, 2020 Winder, GA – Camp Twin Lakes • May 1 – 3, 2020 Clarksville, OH – Camp Joy CAMP VICTORY FOR KIDS • July 26 – 31, 2020 Winder, GA – Camp Twin Lakes

Register at Marfan.org/camps

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By Reed Pyeritz, MD, PhD, and Jane Tumpson In 2018, Dr. Reed Pyeritz and his wife, Jane Tumpson, established The Dr. Reed Pyeritz and Ms. Jane Tumpson Marfan Conference Physician Travel Scholarship. In this issue, they describe the early days of The Marfan Foundation and why they created this scholarship. Way back in the late 1970s we realized that folks with Marfan syndrome had no organization they could turn to for information and support. Dr. Victor McKusick at Johns Hopkins was the first medical geneticist to study Marfan syndrome in depth, and passed his patients and his research to Reed. We organized a small meeting of Reed’s patients, their families, and some medical colleagues and we met in the parlor of Dr. McKusick’s home in Baltimore. What grew out of that meeting was the National Marfan Foundation (now The Marfan Foundation). The early membership specified three goals: improve the care of people with Marfan syndrome; contribute to research; and, develop educational material for patients, professionals, and the general public. These efforts were advanced substantially by the creation of a professional advisory board, comprised of physicians, genetic counselors, and social workers, all dedicated to supporting the Foundation. This professional advisory board (PAB) was composed of 12 people, including a nurse and a social worker who both had Marfan syndrome themselves. What any new organization needs to survive and thrive is funding, and we admit that the Foundation struggled for many years in that regard. Fortunately, eventually enough support developed to expand the Foundation and the PAB. These efforts were aided immeasurably by Priscilla Ciccariello (now the Foundation’s chair emeritus) and her friends in New York. PAYING IT FORWARD We are absolutely delighted to see that the Foundation has evolved and now welcomes individuals and families with other related conditions. Moreover, the dedicated staff and committed health professionals have grown in number, experience, and participation.

p Dr. Reed Pyeritz and his wife, Jane Tumpson

We are absolutely delighted to see that the Foundation has evolved and now welcomes individuals and families with other related conditions. Moreover, the dedicated staff and committed health professionals have grown in number, experience, and participation. The PAB now consists of 28 members, including eight who were members from the earliest times. Many health professionals, in addition to those on the PAB, have been instrumental in providing consultations at many medical centers and expertise at local and national annual meetings. But we recognize that, as we and some of our colleagues age, there is an important need to perpetuate professional expertise. There needs to be a fluid stream of cardiologists, medical geneticists, cardiothoracic surgeons, pulmonologists, ophthalmologists, and other specialists to focus on Marfan syndrome and related conditions. Some of our young colleagues may be interested, but simply have neither the encouragement nor the wherewithal to participate. We recognized this dilemma and decided to fund one young health professional each year to attend the Foundation’s Annual Conference. This individual will work beside one of the experts in the clinic the day before the conference. She or he will spend the next two days participating in the educational sessions, both to learn and

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to participate to the extent possible. In this way, we hope that our more mature colleagues will be replaced as needed by younger and equally expert and committed health professionals upon whom the Foundation and the community can depend. We truly treasure the opportunity to have worked with the Foundation over the decades and trust we have assisted in improving both the life expectancy and the quality of life for everyone with Marfan syndrome and related conditions. Hopefully, the legacy we leave will survive and echo even after our involvement and words are behind us. ENSURING ACCESS TO ANNUAL CONFERENCE As this edition of Connective Issues goes to press, the campaign – which was fueled by an initial leadership gift from Dr. Reed Pyeritz and his wife, Jane Tumpson – surpassed $1 million on December 31, 2019, just 24-months from inception. The Annual Conference has, for over 35 years, been a yearly highlight of The Marfan Foundation and an important touch point for members of our community. The conference is a life-changing experience for individuals and families living with Marfan syndrome and related conditions because they can learn from leading medical experts and connect with others who are on the same medical journey. However, despite their desire to attend Conference, many cannot attend due to the financial hardship of dealing with a genetic condition. In 2018, the Foundation launched the Ensure Access Campaign – with a goal to create scholarships to Ensure Access to conference for years to come. The Foundation is grateful to the Ensure Access Chair, Patricia McCabe, and Co-Chairs, Cory Eaves, Karen Murray, and Dr. Pyeritz for their commitment to this campaign and to the many members of our community who have supported it. If you would like to support this effort, it’s not too late, your gift matters and will have a lasting impact to ensure all who need to attend Conference have the ability to for many years to come. In the next issue of Connective Issues , we will have a complete update on the Ensure Access Campaign and stories of those whose support made its success possible.

A LASTING LEGACY Elisabeth Ann Kane, known as Lisa to her friends, passed away in February, 2019, after a long struggle with Marfan syndrome. She was 64 years old. The lifetime resident of Ohio was not diagnosed with Marfan until she was 31, despite having many of the outward signs of the condition. Lisa received her BA from the College of Wooster in 1977. A gifted artist, she went on to earn her BFA at the prestigious Cleveland Institute of Art in 1984. Lisa was highly intelligent, imaginative, and creative. Despite severe medical issues throughout her life, she was able to maintain a strong strength of character and her sense of humor. An accomplished artist, Lisa found joy through her art. Her friend, Day Logan, said during her eulogy, that Lisa “loved the arts. Not just art painting, but also music, dance, theater, and film. She was an incredibly gifted pianist and would compose her own songs on the piano.” During her life, Lisa never knew anyone else with Marfan, but when she got a computer, she visited Marfan.org and learned about her condition and the work of The Marfan Foundation. Though she watched from afar, she truly valued all the Foundation does for individuals and families living with Marfan and related conditions. In her will, Lisa was generous to her friends. She was also generous to The Marfan Foundation, leaving a bequest worth more than $500,000. Half of this contribution will support the Foundation’s programs. The other half is designated for the Elisabeth Ann Kane Memorial Research Fund to support critical research, including the Aortic Valve-Sparing Operative Outcomes Study, a multi-center, multi-year project that the Foundation supports. The Marfan Foundation is forever grateful to Lisa for her generosity in creating a lasting legacy that will benefit people with Marfan syndrome and related conditions for generations to come. To learn how to leave a legacy gift to the Foundation, please contact Megan Martin, mmartin@marfan.org. All inquiries will be held in confidence.

Find out more about how you can help Ensure Access at Marfan.org/ensureaccess

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LET’S GET TOGETHER! NEW FOR 2020 – VIRTUAL WALK FOR VICTORY We know connection is so valuable and many in our community are not able to travel to a Walk. But, “community” is not about living in a specific zip code; rather, it is a place where people feel a sense of belonging and it is frequently online. More than a dozen teams have already formed around the US in places like Idaho, West Virginia, Kentucky, Colorado, and South Carolina. International teams have already formed as well -- in Costa Rica, Canada, the UK, and Australia.

This year, teams and individuals can register for the Virtual Walk for Victory and begin encouraging friends and family to support them as we lead up to the official Walk day on Saturday, May 2, 2020! Check the details at Marfan.org/VirtualWalk or contact Senior Vice President of Development, Kim Huddleston at khuddleston@marfan.org or 516-314-5610. REGIONAL SYMPOSIUMS ϑ Portland, OR – March 14, 2020 ϑ Lexington, KY – March 28, 2020 ϑ Ann Arbor, MI – April 25, 2020 To register and get more information, head to Marfan.org/RegionalSymposiums THE INFORMATION YOU NEED – ALL ONLINE When you have questions, you want answers as soon as you can get them. For medical and quality of life information related to Marfan, VEDS, Loeys-Dietz, and other genetic aortic conditions, we’ve got you covered at Marfan.org. Virtual Symposium and Empowerment Series webinars , and their resources, can be viewed anytime from any device at marfan.org/resources/patients . Download summaries, factsheets, and listings for you or a care provider at marfan.org/resources/patients/patient-resources . Listen to medical experts answer common questions in our Q & Video Series at marfan.org/resources/patients/marfan-question . Submit a question online to our Help & Resource Center and our on-staff nurse will respond within 24 hours. Marfan.org/Ask ϑ Cincinnati, OH – May 9, 2020 ϑ Denver, CO – May 16, 2020 ϑ Atlanta, GA – June 6, 2020

The year 2020 is packed with opportunities to connect with the community and we’d love to see you! Join us for an event in a city near you this year. WALK FOR VICTORY & TEAM VEDS ϑ South Florida – February 9, 2020 ϑ Southern California – February 29, 2020 ϑ Phoenix, AZ – March 1, 2020 ϑ Houston, TX – March 7, 2020 ϑ Atlanta, GA – March 14, 2020 ϑ Cleveland, OH – March 21, 2020 ϑ Nashville, TN – April 5, 2020 ϑ North Carolina – April 18, 2020 ϑ Birmingham, AL – April 26, 2020 ϑ San Francisco, CA – May 2, 2020 ϑ Boston, MA – May 17, 2020 ϑ New York, NY – June 6, 2020 ϑ Chicago, IL – June 6, 2020 ϑ Portland, OR – June 14, 2020 ϑ Michigan – June 20, 2020 TBD: Washington, DC

*Dates and cities as of 1/9/20

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WE REMEMBER AND HONOR We are grateful to our members and friends who have made contributions in memory of, or in honor of, the following individuals between August 31, 2019, and December 15, 2019. These donations are fully appreciated and support our programs and services that create a brighter future for all those living with Marfan syndrome and related conditions. Donations to Walk for Victory are not included.

Hanna Lee Michael Leopard Syndey Lerman Efrat Lifshitz Josh Rama-Lim Emma Litvinsky Jasmine Llanos Ben Lopkin James Ludwig Daniel Lugano Tallulah Maher Kyle Mann Dr. James Mayer Russell Mclendon

Leila Stillman Riley Styers

Kenneth Fabrizius Anna Frederickson Bryan Funk John Heinemann Shawn Heldt Hugo Hoffmann Sue Janowitz Gail Johnson Sarah Jones Cathy Knox Brian Laughman Milan Lazorcik George LeBlanc Nancy Leddy Jhay Lim

Donations In Honor Of Anthony Albano, Jr. London Alderson Joseph Allen Natalie Arnold Nathan Arrigoni Ethan Bahr Frank Bell Sofia Silva Berenguer Chuck Berst Elliott Bobbe Ken & Danis Bobbe Javier Botet Dr. Allen Braverman David Brown Babetta Brubaker Chase Callahan Clark Family: Galen, Tony & Addi Leo Cole James Dickey Peter Donato Randy & Susan Falco

Nicholas Sumberaz Samantha Thomas

Sam Thomas Laura Torode Maggie Tucker Dario Valli Max Wallace

Adam Warren Vera Wetteroff Sam Woodhouse Katie Wright Stephen Yakimovich Cynthia Zarate

Matthew Mills David Moore Liam Nelson The Noe Family Christopher Norris Josh Nowak Florence Hurley O’Sullivan Dawn & Karl Ockstadt Christian Oviedo

Wayne Van Linden Patrick Mackey IV Jahangir Malekkhosravi Frank Martin Michael Martin David Moore Zachary Moorhead

Donations In Memory Of Carol, Adrian & Elias Adame Jerome Allaire Aurora Ascano Stephanie Baker TJ Barulli Charles Berst Charlene Bordelon Carol Brennan Carol Marks Brennan Babetta Brubaker Jeff Bullis Jr Jeff Burch Paul Burke, III Jerry & George Butler Sarah Cayo Hilary Eagan Clark John Coffey Robert & Dominga Cooper James Corcoran Blaise Martin Dafoe Twyla Davis Rita Dean Michael Dollentas Kelsey Dresser Rev. James Dunnam Andy James Elam Sean Elmore

Patricia Moran Sandy Morris Anne Newman Samuel Noe Shirley Osman

Tori Fatzynytz Amy Flanagan Henry Floyd Leila Gendron Willhite Girls Heather Gooch Hajj Family Connor Hajj Jordan Hannan David Hillel Beckett Hotchkiss

Paul Petroski Leila Preston Brooke Pulliam Andrew Randant Patsy Rexroth Sherry Muller & Rick Reynolds Kevin Rhodes James Richardson Lisa Ritell Dr. Melissa Russo Cole Schmidt Richard Scott Michael Sellers Ava Shaw Colin Shields Raushan Singh Evan Smolen Kaylie Snyder Casey Sprouse Robert Steinbach

Christopher Paulsen Kevin Dale Rhodes Janet, Shirley, Daniel &

Andrew Rigney David Schettler

Richard Scott Spencer Sellas Casey Sprouse Emily Strode Larry & John Torode Ida Wakat Dolores Warnke David Willson Dean Wilson Stephen Yakimovich

Zak Hutton Gail Jehan Tim Jones

Finley & Wilder Keller Dylan & Aiden Keough Kaitlyn & Skylar Kipnis Marcus Kirkendall Dr. Nicholas Kouchoukos Shannon Lamkin George D. LeBlanc

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Winter 2020

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