Connective Issues Fall 2022

Fall 2022

THE MAGIC OF CONFERENCE

SYMPOSIUMS EXPAND IN-PERSON LEARNING

WALK FOR VICTORY GROWS COMMUNITY

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.

After three years of virtual learning and connection, it was amazing to see and feel the energy and enthusiasm at the E 3 Conference in Newport Beach. The magic and energy of our community is always evident when we come together. The halls and workshops were full of people learning and making or strengthening connections and friendships within the Marfan, LDS, VEDS, and related conditions community.

Hoag Hospital was an extraordinary partner and instrumental in the success of E 3 . Their amazing team and Dr. David Liang, along with our Professional Advisory Board and other dedicated medical professionals from across the country, donated their time and expertise to provide essential health screenings, give presentations, and lead workshops throughout the weekend. Because of very special donors, our teens and children also enjoyed a special trip to Disneyland. This unique experience was inclusive, accessible, safe, and, most of all, fun. Shortly after conference, the energy of togetherness was also evident at our kids’ camps in Georgia and Ohio, which we were finally able to safely host. And, we are excited to see the magic of our community yet again at our upcoming Walks for Victory and special fundraising events. Early this fall, we will launch a new series of educational events on Marfan, Loeys-Dietz, and VEDS. We are excited to host two in-person symposia in October - in Seattle and Atlanta - for affected individuals and their families. We are also offering a free, online Research Webinar Series featuring medical professionals who will cover topics like aortic disease, eyes, feet and ankle, lungs, and much more in the coming months. These are exciting times for our community. We are hopeful new trials and research will bring advances in life-saving care and treatment, and we look forward to providing you with the latest updates. Together, with our community, medical professionals, and researchers, the future is more promising than ever.

Learn more and get involved at Marfan.org.

CONNECTIVE ISSUES Fall 2022 VOLUME 41 | NUMBER 3 Connective Issues is the newsletter of The Marfan Foundation. It is published three times per year.

Michael L. Weamer President & CEO

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.

As this edition of Connective Issues went to press, we lost a dear friend of our community, Jay Elliott. Jay has served on the Foundation’s Volunteer Leadership Committee and was a community chair of

p Jay, right, with Dawn Pulliam and Dr. Alan Braverman at the St. Louis Walk for Victory.

the St. Louis Walk for Victory since its inception. A leader of our St. Louis Chapter, Jay was also a passionate community advocate, sharing his experience with aortic dissection and living with Marfan and connecting with others on his own and through our Help & Resource Center to provide support. We extend our condolences to Jay’s wife, Mary, son, Bobby, and the rest of his family. He will be greatly missed.

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

ON THE COVER: Connor Wilson, along with more than 135 other teens and kids, had the special opportunity to visit Disneyland and meet Mickey at the E 3 Conference in July. Photo courtesy of Sapan Patel.

2022

STATS & SNAPS

" Being able to meet others who are affected face to face, and being able to get and share practical health and life advice, is invaluable. It's the most life-changing thing I've ever seen."

636 Registrants from across the US as well as Canada, India, Great Britain, Philippines, South Africa, and Costa Rica. 37 States 80+ Healthcare providers 45 Expert presenters 65 Teens 70 Children ages 5-12 50% Attended conference for the first time. 96% Were either highly satisfied or satisfied with the overall conference.

"I loved being able to have the time to learn and engage in all the different topics you had available while knowing my kids were being well taken care of. I feel this was the best experience I have had and loved learning as much as I could."

" Conference is a magical place where lifelong connections are made and our teens especially feel supported. It was amazing to all be back together again!"

Most Popular Activities ★ General Session ★ Welcome Dinner & Awards Ceremony ★ Creating Connections Luncheon ★ Trip to Disneyland ★ Dessert Social " I really enjoyed the sense of community that conference always brings. Being able to connect with others is something that truly makes this foundation special and different from all the other medical foundation conferences."

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Fall 2022

HEALTH FAIR Provides Essential Screening for Conference Attendees p Thank you, medical leaders! The health fair and essential screenings spanning over two days would not have been possible without the special time donated by members of the Foundation’s Professional Advisory Board, the incredible medical team at Hoag Hospital, and other top medical professionals. Thank you for your ongoing dedication and passion for our community and our mission. Note not all medical professionals who participated are pictured.

A highlight of conference for many is the health fair, where the Foundation provides attendees with access to medical experts on Marfan, Loeys-Dietz, and VEDS. More than 40 attendees received critical healthcare screenings from physicians, nurses, technicians, and genetic counselors from across the country. Meet two families who participated in the health fair this year. GABRIELLA EARNHART Gabriella, 17, and her mother, Heather, have participated in several previous conferences. They were excited to be able to attend the health fair this year. Gabriella was diagnosed with Marfan syndrome at age 5, and she applied for the health fair so she could see specialized doctors who understand her condition and can recognize any new or developing issues. “Some of these doctors practice across the country from us, so seeing them at conference is a really great opportunity that can't be found anywhere else!” said Gabriella. Heather believes it is important to check in with doctors who are Marfan experts. They came with the hopes of getting opinions on specific issues and taking advantage of the specialized care they cannot easily access. “This year my daughter was able to see one of the doctors on the Foundation’s Professional Advisory

Board, Dr. Paul Sponseller, who did one of her past surgeries,” said Heather. “Dr. Sponseller was able to help us determine how to address a problem Gabriella is currently having. Attending the health fair allowed us to finally get answers and formulate a plan.”

p Dr. Paul Sponseller, the head of pediatric orthopedics at Johns Hopkins, along with Judy Marshall, APRN-NP from Lurie Children's Hospital in Chicago, reviews his findings with Gabriella and Heather.

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THE DAMMANN FAMILY Dan, Denise, Katie (16), & Hannah (13) The Dammann family has an unidentified connective tissue disorder that is very similar to Loeys-Dietz and signed up for the health fair to get more answers and direction on the many different medical problems they experience. They previously attended the conference health fair in 2015 and 2018, but feel it is important to get up-to-date information every few years. This year, they met with several medical professionals, including a geneticist, a cardiologist, and a foot and ankle specialist. “We were able to get some helpful information to modify activity restrictions for heart problems and change our plan on a foot/ankle issue,” said Denise. “Also, we were able to discuss a plan for future genetic testing that may be available for us.” In addition to the screenings, the family was excited to be a part of conference to learn more from the sessions and make connections with the community. "WOW and WOW! Thank you so much to the whole Foundation for all they did to make this a wonderful experience. A special shout-out to the Hoag Hospital team. Dr Liang, Meg, and Rita were so helpful multiple times. The doctors at the health fair were incredible. Thank you to all!"

p Dr. Mary Roman, Professor of Medicine in the Division of Cardiology of the Department of Medicine at Weill Cornell Medical College, Attending Physician at New York Presbyterian-Weill Cornell Medical Center, and Foundation Professional Advisory Board member, examines Katie during the health fair.

"These conferences are THE REASON I and so many others are still here. Without the

Foundation, my family and I would still be undiagnosed and searching for answers. It’s the healthcare assessments, work of the doctors, volunteers, and Foundation as a whole that changes lives. Thank you for everything you do!"

“Our daughter, Katie, is part of the Foundation’s Teen Council and she was looking forward to meeting her fellow council members in person,” said Denise. “Both of our daughters are involved with the online teen events and were excited to meet the teens they have met online over the years and to make new Marfriends.”

"Dr. Carrol made the conference worth it! We needed help with my daughter’s pain management, and he put all the pieces of the puzzle together for us. We are so excited to go back home and share this with our doctors."

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Fall 2022

p Brandon, Heidi, and Grace shared their personal stories with attendees. PERSONAL PERSPECTIVES PANEL

Connecting with others in the community and hearing their stories is one of the most valuable aspects of attending a Foundation event. The Personal Perspectives Panel at the E 3 Conference featured individuals with or affected by Marfan, VEDS, and Loeys-Dietz who bravely shared their life experiences and offered valuable advice on how they have improved their quality of life. u GRACE MEYERS – I’m 18, I live in Michigan, and I have Marfan syndrome. I was diagnosed at the age of four by my pediatrician. My mom has been a huge advocate for my health my entire life. About a year after I was diagnosed, my mom found out about The Marfan Foundation. She attended a conference in Boston and learned a lot. I went to my first conference when I was 10 years old. I actually met my best friend, Grace Barnhart, there. As I got older, Grace and I started to interact with the Foundation more. We got very involved in the community and were able to meet a lot of people like us. The support and connections I have made have truly changed my life. I am very lucky to know a lot of people with my condition and be able to have so much support. Having those people to text at any time and knowing that they understand me and can either provide advice or just love and support is what I need to get through everything Marfan throws at me. u BRANDON CRAWFORD – I'm 28, I live in a small town in eastern Kentucky, and I have Loeys-Dietz type 1. Growing up, we always knew I had limitations but to say they changed me would be a lie. I don’t know who I would have been had I not had this condition.

I've made the best of life that I can. I never played sports, but I never wanted to; there were plenty of things I could do and loved. No, I never jumped out of an airplane nor will I ever. I always hear the term normal - that I'm not like everyone else. But I'm happy with how I am. I've been the first for so many things and that's a badge of honor for me. To date, I just recently had surgery number 20. For all of our newly diagnosed friends, I would like to say: you're not alone. This community is so knowledgeable. This room is full of people who understand where you are. There are numerous Facebook groups for families and patients to connect and hear from others. u HEIDI GREEN – My nine-year-old daughter was diagnosed with VEDS last year. The diagnosis came after eight years of trying to find answers and being told that she's perfectly healthy and there's nothing wrong. Finally, after persisting in getting genetic testing done, it confirmed that she has VEDS. How will she be able to handle this diagnosis? Not just the physical worries and the lifelong medical involvement, but also the mental strength it takes to not have it totally consume you. I tell her, and have to consciously keep reminding myself, that we don't have to stop living, but we do have to make modifications for her to live her life to the fullest. Another thing that has helped with coping is knowing you're not alone. The VEDS Movement and the community have been incredibly supportive. For example, my daughter attends the monthly Kids Club, and I attend the parent support group when I can. Try to stay positive and be present in the moment because the future for VEDS is bright.

One reoccurring message from the panelists was the importance of connection to community. Please take advantage of the many opportunities to gain support and make lasting bonds with others through our online support groups, Walk for Victory events, symposiums, camps, and much more. Visit the Get Involved tab at Marfan.org .

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Our volunteers are invaluable! During conference, we recognized several volunteers from our Marfan, LDS, and VEDS communities who have made significant contributions in the areas of awareness, education, support, and fundraising. We thank you! CONGRATULATIONS

The Cheryll Gasner Spirit of Service Award Elaine & Robert Matranga Aortic Center at Hoag Hospital Presbyterian. The aortic team at Hoag received the award for the care they provide to patients; their outstanding education efforts; their support of community connections through the Southern California Walk for Victory; and their leadership.

Heart of the Matter Award Betcy Matarrita (with Dr. Juan Bowen)

Heart of the Matter Award Christopher Stuart (with Dr. Hal Deitz)

The STAR Award (Special Thanks and Recognition) Jess and James Milburn, right (with Dr. Chris Malaisrie)

The Community Leader Award – Joanne Jordan and Ramona Bywater (with Dr. David Liang)

Rising Star Award Faith Frazier and Katie Dammann

The Loeys-Dietz Syndrome Heart of Gold Award – Bridget Porter Metz, right (with LDSF board member Dawn Reiner)

The Heller Family Scientific Research Award – Dr. Kim Eagle, University of Michigan, right (with Dr. Alan Braverman)

Volunteer Recognition Awards Mariah Wessel-Draper, Morgan Jozwiak, Carole Nowak, Heidi Green, and Sarah Jeffs (not pictured: Meg and Zoe Boeglin, Sarah and Brian Maher, Ashley Rose Marisch Koengeter, and Roe Nania)

Loeys-Dietz Heart of Service Award Brandon Crawford, Heide Padilla, Julie Wilson, and Regina Korochik (with LDSF board member Gretchen MacCarrick, second from left)

Priscilla Ciccariello Award Caryn Kauffman, left (with Foundation board advisor, Maya Brown-Zimmerman)

Young Adult Community Leader Award – Peter Donato, left (with board member Ben Weisman)

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AWARD SPOTLIGHT Dr. Peter Byers and Frances Marin Receive Awards at the E 3 Conference

Dr. Peter Byers is a Professor in the Department of Pathology and Department of Medicine (Division of Medical Genetics) at the University of Washington School of Medicine in Seattle and is a member of the Scientific and Professional Advisory Boards for The Marfan Foundation and The VEDS Movement. At the E 3 Conference, Dr. Byers was presented with the first Dr. John DeMasi Award for his leadership, care, research, and advocacy for people with VEDS for more than 40 years. This was the first award of its kind to honor the late Dr. John DeMasi who was a steadfast advocate for the VEDS community. In 2017, John and his brother David launched a nonprofit -- FIGHT vEDS. He also partnered with a lab to launch a genetic testing program that helped people obtain rapid, affordable genetic testing which continues today. Dr. DeMasi worked with researchers to launch the first VEDS International

p Dr. Peter Byers, right, with Dr. John DeMasi’s brother and leader of Fight vEDS, David. Right: Dr. John DeMasi.

Research Symposium and establish the VEDS Collaborative. At the time of his passing in 2020, John was actively working on efforts to launch the first clinical trial in VEDS.

"Grateful doesn't even begin to describe how appreciative I am of Peter Byers. He has dedicated his life to helping the VEDS community purely because he has an enormous heart. His wealth of knowledge has not only improved the lives of people with VEDS, but countless other family members and future generations of people with VEDS. He is truly an amazing human, and we are lucky to have him as an advocate." – Aaron Sander

Frances Marin was presented with the first Cathy Bowen Award for her unwavering support of the VEDS community over the last 18 years. She became involved after her daughter was diagnosed in 2004 at age 10 and has been her daughter’s advocate in making sure she receives proper treatment, educating her team of specialists on VEDS, and raising awareness among other medical professionals. Frances has helped countless newly diagnosed people and their families get the information they need about medical resources, social support, and research. This award was named in honor of Cathy Bowen, who recently passed away. Cathy fought tirelessly for people with VEDS Mother,” she made it her mission to help save lives by spreading VEDS awareness, education, and to help other families. She educated medical professionals and developed a VEDS CD-ROM to educate those in emergency medicine. Cathy’s work to advocate for people with VEDS over the 25 years after David’s death touched many lives in our community. in memory of her son, David. David passed away from VEDS at the age of 14 in 1996 before he was diagnosed with the condition. Known as the “VEDS

p Frances with her daughter, Bella, and husband, Raul. Left: Cathy with her son, David.

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IT’S OK TO BE A GIRAFFE

If your child is the first in your family to have Marfan, Loeys-Dietz, or VEDS, you can’t help wondering what is going on in their mind as they deal with medical issues and more doctors than any child should have. In a new book, Dude, I’m Just a Giraffe , Christopher Stuart pulls the curtain back on what went on in his mind as a child and teen dealing with Marfan as well as being on the autism spectrum. Chris recently

kids with Marfan at the conference. Three of these answers were used in the film, including mine. They were specifically selected to show a spectrum of reactions. One was negative, bemoaning being trapped amongst fellow freaks. One was neutral. The other was blindingly, frankly saccharine-sweet levels of positive. I was the neutral opinion, and the title of the book is a paraphrased version of my interview answer. u What do you hope others to be a giraffe. Your life doesn’t need to suck, and you don’t need to be some symbol of perseverance for the Marfan community. You’re allowed to just BE. u Did you learn anything about yourself while going through the process of writing the book? I’ve always been a pretty self-aware boy, so I didn’t learn all that much new about myself. Rather, the way everyone around me saw me - how often I was the glue holding various social groups together without even realizing it? That really surprised me! will learn when they read your book? Just that they’re not alone in this, and they can have a normal life. That it’s okay

Karen Murray, a member of the Board of Directors, wrote the Introduction for Chris’ book. She was also a longtime friend of Chris’ mother, Ann Reinking, a legendary Broadway dancer, choreographer, actress, and singer. Here is an excerpt from the introduction. I’m just blown away by this book. I’m not sure anyone will truly believe all that Chris has been through and endured throughout his lifetime. That’s the truth about Marfan. You just never know what is going to hit you and, it sounds cliché to say this, but “rolling with the punches” is all you can do, and no one is doing it better than Chris! He has endured more than most and also has his emotional challenges to deal with...being on the spectrum with autism. But through it all, he studied, graduated, built his relationships and his friendships, both young and old, and knew how to surround himself with people who only made him better! And he did it on his own, and he did it his way. Congratulations! Such a good read. Dude, I'm Just a Giraffe is available through several e-book distributors including Kindle and Barnes & Noble.

attended the E 3 Conference where he was recognized with the Foundation’s Heart of the Matter award. He also signed copies

of his book which were given to each attendee. We sat down with Chris to learn more about his book. u What can you say about the title of the book? I go into detail in the book itself! But to give a quick breakdown, do you recall the movie that the Foundation made, In My Hands ? Well, the filmmakers did a brief interview with every Marfan kid involved in that film. We were all at the Marfan conference at the time, and so most of the interview was centered around our experiences while there. One question was how we felt being around all these other

A giraffe is just a giraffe. Nothing more, nothing less. He does not envy the animals around him for being "normal," nor does he see himself as above them all (even, from a certain point of view, he quite literally is) because he's a giraffe. He does not see himself as some sort of freakish mutant horse, but neither does he see himself as some sort of Super Horse. ~Excerpt from Dude, I'm Just a Giraffe

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EXPLORING FOOT & ANKLE ISSUES WITH DR. ADAM BITTERMAN

The general session at the E 3 Conference featured many speakers, including Dr. Adam Bitterman, a board-certified orthopaedic surgeon, Chairman of Orthopaedic Surgery at Huntington Hospital, and Assistant Professor at the Donald and Barbara Zucker School of

Medicine at Hofstra/Northwell Health, who provided an outstanding talk on feet and ankles in Marfan and related conditions. In this edition of Connective Issues , Dr. Bitterman answers some of the questions attendees submitted at conference. u Does bone density affect the feet of those with Marfan syndrome? This is a question that we continue to investigate. There is no good data on the degree of bone density changes that can result from Marfan syndrome or the medication that is taken to manage Marfan syndrome. In general, osteopenia and osteoporosis are degrees of weakened bone density and can lead to stress injuries/fractures throughout the feet. u What doctor deals with bone density? I suggest having your primary care doctor involved in the decision-making surrounding your bone density and appropriate testing. In addition, an endocrinologist or a physician who deals with glands and hormones can address one’s bone density. u At what age can abnormalities in feet/ankles be identified in someone with Marfan? There is no set age where the deformity (deformities) This year, The Marfan Foundation’s educational webinar series for our community of individuals and families living with Marfan, Loeys-Dietz, and VEDS is focusing on what’s new in research and will be presented by a leading medical expert. As always, it is free to participate in these webinars, though registration is required. All webinars will be held at 7 pm – 8 pm Eastern. Following each presentation, there will be time for questions and answers. To register, please visit Marfan.org/resources/educational opportunities. If you have any questions, please contact Eileen Masciale, Chief Program Officer, emasciale@marfan.org. MARK YOUR CALENDAR: WEBINAR SERIES ON RESEARCH TOPICS

p Dr. Bitterman discussed foot and ankle issues and how to improve them with E 3 Conference attendees.

begin. They tend to evolve with time and age as one grows throughout adolescence and adulthood. u How do you know if you need orthotics and if they should be custom or off-the-shelf inserts? I recommend having your feet and ankles evaluated by a board-certified orthopedic surgeon or podiatrist to assess the mechanical alignment of your feet and better evaluate the indication/need for orthotics. They are not for everyone! u Is arthritis common in Marfan feet? Yes u Are AFOs (ankle and foot orthoses) and SMOs (supramelleolar orthoses) still recommended for children with severely collapsed ankles? Yes, they are indicated in many conditions that are causing pain. Not all deformities or flattened arches require these devices.

If you have additional questions about feet in Marfan, LDS, or VEDS, please submit them to our Help & Resource Center at Marfan.org/ask . You can also download our fact sheet on how the feet are affected from our website.

September 19, 2022 – Aortic Disease Research, Featuring highlights from the 2022 GenTAC Aortic Summit – Dr. Kim Eagle, University of Michigan November 8, 2022 – Physical Activity Research Dr. Alan Braverman, Washington University in St. Louis, and Dr. Siddharth Prakash, UT Health CURRENT WEBINAR SCHEDULE:

February 23, 2023 – Genetics Research Dr. Hal Dietz, Johns Hopkins

March 28, 2023 – Lungs Research Dr. Enid Neptune, Johns Hopkins

May 2, 2023 – Eye Research Dr. Jefferson Doyle, Johns Hopkins, and Dr. Deborah VanderVeen, Boston Children’s Hospital

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THANK YOU We extend a special thank you to the following medical centers, companies, and individuals that were instrumental in making this year’s conference a huge success. We are grateful for your time, talent, and support!

HOST

CHILDREN/TEEN PROGRAM SUPPORTERS Hoag Memorial Hospital Presbyterian Danni Sun

Liang Family Witte Family Wheeler Family CONTRIBUTORS mophie ndd Medical Technologies Phillips Healthcare Usborne Books

SPONSORS

HOAG PLANNING COMMITTEE Anthony Caffarelli, MD, Newkirk Family Endowed Chair in Aortic Care Director, Elaine & Robert Matranga Aortic Center Director, Hoag Cardiac Surgery David Liang, MD, PhD, FACC – Director, Hoag Marfan Syndrome & Related Conditions Program Asad Shah, MD – Co-Director, Hoag Cardiac Surgery Meg Boeglin, BSN, RN – Clinical Nurse Navigator, Hoag Marfan Syndrome & Related Conditions Program Chelsey Weatherill, MS – Genetic Counselor, Elaine & Robert Matranga Aortic Center Rita Weise, MSN, ACNPC-AG – Acute Care Nurse Practitioner, Elaine & Robert Matranga Aortic Center

Angela Devlin, MBA, RN, BSN – Executive Director, Jeffrey M. Carlton Heart and Vascular Institute PHOTOGRAPHY Timothy D. Joyce Photography

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Fall 2022

Second Spanish Summit Announced

The Marfan Foundation is pleased to announce that its Second Spanish Summit for Spanish-speaking people with Marfan, Loeys-Dietz, and VEDS is scheduled for Saturday, January 21, 2023. The Summit, a half-day virtual program, will again be chaired by Dr. Juan Bowen, Director of the Marfan and Thoracic Aorta Clinic at Mayo Clinic, who is a member of our Professional Advisory Board and Board of Directors, and Bert Medina, President and CEO of WPLG-TV Miami, who is also a member of our Board of Directors. Joining the planning committee this year are Dr. Arturo Evangelista, Vall D´Hebron Research Institute, Barcelona, Spain, and Dr. Laura Muiño Mosquera, Ghent University Hospital, Belgium. Betcy Matarrita, of Costa Rica, a volunteer leader in our community, serves as Community Chair for the second consecutive year. Last year, the Foundation held its first Spanish Summit and attracted nearly 400 people from all over the world. The presentations were recorded and are featured on our YouTube Channel. Since then, the Foundation distributed its first Spanish

electronic newsletter. Plans are in place to launch a Facebook page and Instagram page in Spanish before the end of 2022. Registration for the Second Spanish Summit will be available later this year. For more information, please contact Eileen Masciale, Chief Program Officer, emasciale@marfan.org. p Betcy Matarrita, Community Chair of the Spanish Summit, with friends she met at conference, David (left) and Ramiro (right).

"Hosting these types of events in Spanish is important not only because of the international outreach and the exposure the Foundation gets but also because of all the participants’ access to medical information. There is nothing like having vital information about your medical condition in one’s native language!" – Betcy Matarrita SEATTLE, ATLANTA TO HOST REGIONAL SYMPOSIUMS THIS FALL

The Foundation is looking forward to continuing its Regional Symposiums on Marfan, Loeys-Dietz, and VEDS this fall with full-day educational events scheduled for Seattle on October 8 and Atlanta on October 15. The Seattle Regional Symposium is hosted by Seattle Children’s Hospital at the Sand Point Learning Center. We are fortunate to have three members of our Professional Advisory Board as event chairs - Dr. Luciana Young, Dr. Sherene Shalhub, and Dr. Peter Byers. The agenda will feature leading experts from the Pacific Northwest, including Dr. Lynn Sakai from Oregon Health Science University, a member of our Professional Advisory Board who first identified fibrillin and, with other scientists, linked it to Marfan syndrome. The Atlanta Regional Symposium is hosted by Children’s Healthcare of Atlanta (CHOA) with Dr. Glen Iannucci serving as event chair. In addition to Dr. Iannucci, featured speakers will include other leading experts from CHOA as well as from Emory University and Piedmont Hospital.

Seattle • October 8 Atlanta • October 15

Registration for the Regional Symposiums is available at Marfan.org/resources/educational-opportunities. The cost is $25 per person and includes breakfast and a Creating Connections lunch, a great time to connect with other attendees and the speakers. Please note that COVID vaccine documentation is required for the Seattle event. Plans are also underway for Regional Symposiums in New York City on April 15, 2023, and Ann Arbor, MI, on May 6, 2023. Registration will be coming soon. If you have any questions please contact Eileen Masciale, Chief Program Officer, emasciale@marfan.org.

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OCTOBER

WELCOME The Foundation Appoints New Members to its Boards ANDREW TOY President, Clover Health Appointed to Board of Directors

ACTION MONTH

Andrew, a Hong Kong-born technologist and entrepreneur who is based in California, was diagnosed with Marfan syndrome at 17 years old after losing his father to an aortic dissection. Several times a year for the past 25 years, Andrew has visited his doctor to manage his

VEDS Action Month is a time when the community comes together to focus on raising awareness of VEDS to improve the outcomes for our community and ensure more people get diagnosed and receive the proper medical care. The VEDS Move ment has numerous opportunities to get involved, including getting proclamations of VEDS Action Month from your state or local government, educating your local medical providers and first responders, joining the virtual Birthday Bash celebra tion on October 6, sharing your story, and much more! Be sure to check the website, TheVEDSMovement.org , for VEDS Action Month details.

condition; these ongoing interactions have instilled in him a deep understanding of the shortcomings of the healthcare system and a desire to fix the industry’s toughest problems.

XIAO JING (IRIS) WANG, M.D. Gastroenterologist, Mayo Clinic Appointed to Professional Advisory Board In addition to her clinical activities as a gastroenterologist, Dr. Wang is active in research and education, providing mentorship to residents and fellows. She has authored multiple publications in peer reviewed scientific journals and continues to conduct clinical studies to understand MAYA BROWN-ZIMMERMAN Appointed to Advisor, Board of Directors For more than 10 years, Maya has been the go-to person for anyone in the Marfan community. She is educated and informed, compassionate and empathetic, and willing to share her personal experience. As the voice of the community, Maya has been a significant contributor as a previous member of the Foundation’s Board of

mechanisms, diagnosis, and treatment of gastrointestinal symptoms and disorders.

Join us for the 3 rd Annual Birthday Bash Fundraiser on October 6, 8 PM Eastern. We will be celebrating the power we have when we come together as a community. Hear inspiring stories and engage with others while having lots of fun! This is an online event so you can join from anywhere. Register now at TheVEDSMovement.org/VEDSBash

Directors and as a volunteer leader for many years. Maya also serves as an advisor to our Professional Advisory Board.

The Foundation would like to extend a THANK YOU to Beth Utz and Emily Wheeler who completed their terms on the Board of Directors and Dr. Kim Eagle who served as an advisor to the Board of Directors. Dr. Eagle continues to serve as chair of the GenTAC Alliance, a division of The Marfan Foundation. Beth remains on the Strategic Advisory Board for the Loeys-Dietz Syndrome Foundation. To learn about the leaders volunteering their time and talents to the Foundation, visit Marfan.org/about/team .

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Fall 2022

GRASSROOTS COMMUNITY WALKS TURN INTO INTERNATIONAL AWARENESS AND FUNDRAISING SUCCESS

In 2013, the Foundation launched the Walk for Victory in two cities to raise awareness for Marfan, LDS, VEDS, and other genetic aortic conditions; celebrate and honor the community; reach new areas; and raise funds. Over the years, the Walk initiative has experienced exponential growth resulting in increased awareness and community bonding across the country and, with the Global Walk for Victory, across the world. Last year, our Walk for Victory events attracted more than 4,000 people in 19 cities and all Walks exceeded goals to provide support for essential programs and research. Thanks to our hospital partners, corporate sponsors, medical and community chairs, and amazing teams that represent Marfan, Loeys-Dietz, and VEDS, in 2021-2022, this signature program raised more than $1 million for the first time ever. We are excited to continue to expand the Walk for Victory in 2023 with two new cities – Ann Arbor, MI, and Denver, CO. To find a walk near you, visit Marfan.org/walk .

"The New York Walk for Victory has been our family's main fundraiser since our daughter, Lulu, was diagnosed in 2016. The Walk not only helps us spread awareness through our fundraising efforts but has helped us meet so many other local families and Marfan specialized doctors in the tri-state area. It feels so nice to have a local community that can relate and understand what your family might be going through." - Sarah Maher with her three girls and their cousin at the New York Walk for Victory.

“The Northern California Walk for Victory really focused on growing stronger together, providing you with the help you need to advocate for your child or loved one and connecting you with other parents and families. The best feeling was knowing you are not alone on this journey! There was so much support from everyone and a tremendous outpouring of love. You can do this. Your child or loved one can do this too. You set a great example of strength for your family!” - Linda Tapia participated in the Northern California Walk for Victory for the first time this year. Her son, Marko Olivia, has Marfan syndrome. (Tapia family, left, pictured with a family they met at the walk.)

“The Walk has been instrumental for our family in making connections with the local Marfan community here in Ohio. The Walk has also given us a great excuse to get together with family and friends and spread awareness about connective tissue disorders. I am really proud of the work we have done to help fund critical research projects and continue spreading awareness of Marfan syndrome and related disorders." – Shannon Mace with her family at the Cleveland Walk for Victory.

“It warmed my heart to see the sense of

community we already had with people we had never met. It was so empowering to see how many people

came out to support Lincoln and everyone else with Loeys-Dietz, Marfan, and VEDS. I did not realize how isolating, as a mother, it felt never having met anyone else with LDS. Due to the Walk for Victory, we were finally able to meet other people, in person, with Loeys-Dietz syndrome... it was like a breath of fresh air.” - Julie Hervatin attended the Phoenix Walk for Victory for the first time this year. Her son, Lincoln, who was recently diagnosed with LDS, celebrated his 2nd birthday on the same day.

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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 April 1, 2022 –August 10, 2022. 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.

Donations In Honor Of Marie Abbruzzese Sarah Adams Randi Alf

Skylar Flewelling Debbie Folkes Virginia "Jean" Ford Lita Forster The Freda Family Tami Friedman Jack G Blake & Opal Gardner Teri Gosselin Mila Grace Marla Greves Amy Guerriero Jack Guglielmo Beckett H Connor Hajj Stella Hall Donald Hastings Alexandra Hathaway Tesla Heddle Hanna Hentze Will Holman Daniel Holt Ray Hook Beckett Hotchkiss Brian, Katelyn, & Noah Howell Rhue & Guevara Ivy Torres Cassie Jennings

Gavin Marcus Ally Marisch Steven & Alex Marpman

Zach Truex Nick Tuene

Matt Ingraffia Christopher Jedda John David Johns William (Bill) Johnson Sarah Jones Margaret Kristl Darryl Langshaw Alexa Lawrence Lisabeth "Dixie" Little

Barbara Tyznik Leslie Underhill Kiara Updike Samantha Vallier Maria Void Michael Walter Youqun Wang Paul Warehall Malcolm West Teddy Whelan Chad Wiedyk Connor Wilson Sam Woodhouse Katie Wright Luke Wagner Max Wallace

Eileen Masciale Benjamin Mason

Eric Ames Nora Baker

Tom McLeod Bert Medina Carlos Melendez Din Miftari Bailey Milburn The Milburn Family Caroline Miller Brian Millsap Macon Mitchell Marc Moon Claire Moore Madeline Mary Moore Michael Murray Peyton Nealy Eli Neisius Kevin O'Brien Ryan O'Sullivan Noah Padilla Genevieve Pollaro Kristi Posival Jeanette Pridgen James Richardson Ayden Riggs Adam Robertson Brooke Rose Pamela Russell Varun Sampath Carmen Santiago Soraya Ivonne Santiago

Albert Bange Beckett Banks Kelly Barnes Michael Bartlett Heather Bean

Allyson Marisch Albert Matsuura Scout McCauley Connor Metz Clara Meyers Jonathan Miller Ron Morford Andy Morrell Angelo Nania, Jr. Casey Nilles Mary O'Brien Shirley Osman

Dennis Berg Daniel Birch

Billy Bird Jack Bish Michael Blake Kristi Boles Cherry Bomb Emma Borreggine Bernie Brady Kyle Brady Michael Brandt Dr. Alan Braverman The Braverman Family Pauline Brehmer Kevin O’Brien Carol Ann Brown Dr. Duke Cameron Chris Cardoso Team Cassie Rikki Cherry Roberta Confino Dominic Corso Charles Corson Dave Corson Kelly Cox Michele Cripps Vickie Dalton Alex DeCo Robert Diamond Haley Dostalik Jace Ducey Grace Ehbar Emilio & Xaeed Camilla Fagerholm Henry Farfsing Emma Farley Amy & Steve Fink Peter Finn Joan Flaum Dianne Fleener Maia Fleener

Katherine Yasick The Yasick Family Avery Yastrow Marlies Zandbergen Jane Zore Donations In Memory Of Martha Allen Christian Banke Albert V. Barbieri, Jr.

Daniel Miriti Pacheco Hunter John Paproski Christopher Paulsen Marie Petrosillo Richard Powell Ann Reinking Shirley, Daniel, Andrew, & Janet Rigney Trey Robertson Michael "Tony" Rosales Nathan Schierling Ava Shaw Charles Spitler Emily Strode Johanna Talley Greyson J. Templeton Kelly Toohey Tony Toy Dolores Walsh Rose Walton Norma Warren Kelli Weickum Carolyn Rose Weinhold Belinda Precord Wellman Ronald Westcott

Rochelle Bass Aleksei Boroja Catherine Bowen

Eric Johnson Helen Jones Mo Jurgens Emily K Mimi Kasper Amelia Kasper Caryn Kauffman

William Boylan Carol Brennan Marissa Broady Jerry and George Butler Sarah Cayo

Caden Schaeffer Avery Schwartz Alex Sekela Jeremy Semanoff Lia Sirna

Aileen Cheng Nancy Conger Joshua Davis John Deblecourt Deborah Driber Clifton Durand Ida Tracey Fee Virginia Ford Bryan Funk

Kelley Keyes James King Matthew Korochik The Kouchoukos Family Foxy & Shana Kusin Nick Lee Sydney Lerman The Lerman Family Sinclair Li Preston & Simon Li Dr. David Liang Jan Lynch

Lion Sisters Anne Smith Boo Smith Brian Smith Catalina Smith Steve Smith Theodore Emmet Smith

Delores Gallucio Matthew Glennon Jeni Guzinski Paul Hartmann Ross and Kathleen Hooker Vaughn & Frank Howell Eileen Ilberman

Dr. Paul Sponseller Mila Grace Stamer Robert Steinbach Samantha Thomas

Denise Winter Liesha Wood Christopher Yasick Michael Yasick Matthew Yeager

Eleanor Magel Talulla Maher Jeanette Malca

Kayley Tigges Tom Toothman

Family Marchiano Michelle Marchiano

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Fall 2022

22 MANHASSET AVENUE PORT WASHINGTON, NY 11050

CALENDAR OF EVENTS The Foundation hosts numerous educational, community, and fundraising events, online and in person, throughout the year. Be sure to check the online calendar for a full listing at Marfan.org/events . SEPTEMBER SEPT 18: Walk for Victory, Cleveland, OH SEPT 23-25: Camp Victory for Families (Georgia) SEPT 24: Heartworks Houston SEPT 30–OCT 2 : Camp Victory for Families (Ohio) OCTOBER OCT 2: Walk for Victory, St. Louis, MO OCT 6: VEDS Birthday Bash OCT 8: Regional Symposium on Marfan, Loeys-Dietz, and VEDS, Seattle OCT 15: Regional Symposium on Marfan, Loeys-Dietz, and VEDS, Atlanta OCT 23: Walk for Victory, Indianapolis, IN NOVEMBER NOV 3: Evening with Heart Scottsdale NOV 6: NYC Marathon NOV 29: Giving Tuesday DECEMBER DEC 3: Walk for Victory, Sacramento, CA DEC 4: Walk for Victory, Tampa, FL JANUARY JAN 21: 2 nd Annual Spanish Summit (virtual) JAN 26: UnCorked (virtual)