Connective Issues Fall 2023

Fall 2023

39TH CONFERENCE HIGHLIGHTS

NEW RESEARCH GRANT RECIPIENTS ANNOUNCED

FOUNDATION EXPANDS GLOBAL REACH

The Marfan Foundation is a nonprofit organization that saves and improves lives while creating community for all individuals with genetic aortic and vascular conditions, including Marfan, Loeys-Dietz, and Vascular Ehlers-Danlos syndromes. We work tirelessly to advance research, serve as a resource for families and healthcare providers, and raise public awareness. We will not rest until we have achieved victory.

Greetings, Whether I am looking back to the amazing programs and camaraderie we enjoyed at Conference 2023 in Chicago or looking ahead to the January 2024 Virtual Spanish-Language Summit, I am inspired by the immense commitment our diverse community members, expert healthcare providers, world-class researchers, outstanding leadership volunteers, and talented sta ff bring to every aspect of the Foundation’s mission.

We have so much to be proud of and so much to look forward to in the remainder of 2023, well into 2024 and beyond. In the coming year, we will also have 30 in-person events around the country — more than at any time in our history — including symposiums, Walks, and special events. This year we had 68 participants who had 331 multidisciplinary appointments at our Health Fair. In 2024, we will o ff er our traditional Health Fair in conjunction with a medical and science update featuring world experts in Marfan, Loeys-Dietz, and VEDS, along with a Victory Party. Additional details and location will be announced later this fall. Core to advancing our mission — especially when it comes to reaching rural, diverse, and traditionally under-resourced people and communities — we are planning a Virtual Global Conference June 20–22, 2024, with presenters across time zones engaging our communities in multiple languages. Our last Virtual Conference had a record 3,000 participants from 75 countries. The format is critical to bringing the Foundation’s best education, support, and hope to our community in every corner of the nation and around the world, and vastly increases access to our o ff erings for those who might otherwise not find connection due to multiple real life barriers (including di ffi culty with access to transportation, medical inability to travel, and personal financial constraints). Then, we will return to Atlanta for an in-person Conference July 10-13, 2025. Conference 2025 will again be hosted by our friends at Children’s Healthcare of Atlanta and Emory at their new medical campus. We hope to see you at our upcoming local and regional events including our symposiums in Pittsburgh, Los Angeles, Austin, Portland, and more, and our Walk for Victory events in 22 cities reaching over 5,000 members of our community. We’ll have special post-Walk gatherings planned for VEDS in Houston, Loeys-Dietz in Chicago, and at several locations for Marfan. Enjoy this edition of Connective Issues . Happy reading!

Learn more and get involved at Marfan.org.

CONNECTIVE ISSUES Fall 2023 VOLUME 42 | NUMBER 3 Connective Issues is the newsletter of The Marfan Foundation. It is published three times per year.

Inquiries should be addressed to: brandcomms@marfan.org

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

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: Dr. Hal Dietz, a member of our Professional Advisory Board and a presenter at Conference, attended a Loeys-Dietz mixer and met friends Elina, Georgie, and Ariele.

CONFERENCE STATS & SNAPS 39 th Conferenc e i n Chicago o

“I have felt so isolated since my son was born during COVID and we had never met anyone else with Marfan Syndrome. Meeting other parents helps me not feel so alone.”

628 TOTAL

ATTENDEES

Registrants from across the United States as well as from Argentina, Australia, Canada, Chile, China, Costa Rica, Great Britain, Libya, Mexico, Nigeria, the Philippines, and South Africa. 12 ............... Countries Represented 78 .............. Children 61 ............... Teens  Attendee Condition Connections 260 ......... Marfan 118 ............ LDS 96 ............. VEDS 27 .............. Other  Health Fair at Conference 331 ........... Multidisciplinary Health Fair Appointments 35 .............. Healthcare Professionals 28 ............. Healthcare Observers 68 .............. Health Fair Participants  Popular Activities ★ General Session ★ Welcome Dinner & Awards Ceremony ★ Creating Connections Luncheon ★ Victory Party ★ Condition-Specific Mixers  Top Reasons for Attending 1. Connect with other a ff ected individuals 2. Have direct contact with medical professionals 3. Learn more about living with a genetic aortic or vascular condition

SCAN THE QR CODE to learn about one attendee's experience at Conference.

“As a parent, I found it to be very emotional and powerful. I was gladly surprised when my daughter burst into happy tears to tell me how relieved she was to meet teenagers that deal with the same daily struggles as she does.”

3

Fall 2023

HEALTH FAIR Provides Essential Care for Attendees The39 th Foundation Conference, co-hosted by Ann & Robert H. Lurie Children's Hospital of Chicago and Northwestern Medicine, kicked o ff with the Health Fair on July 13-14 at Lurie Children’s in downtown Chicago. More than 35 medical experts from across the country dedicated their time over two days to making a di ff erence, providing access to screenings and assessments, echocardiograms, eye exams, lung-function testing in one location. Sixty-eight attendees and their families took advantage of this unique opportunity to receive medical advice from top experts in Marfan, Loeys-Dietz, VEDS, and related conditions. Here are two families’ experiences at the Health Fair.

 The Allen Family, Massachusetts Meet Cameron Allen, a vibrant 17-year-old with Marfan syndrome, and his mother, Sue. “We never considered attending the Health Fair because we assumed all our medical needs were being met,” said Sue. “But when Cameron needed to see a pulmonologist urgently, we turned to the Health Fair for help. The experience turned out to be a bonus win as we found expert specialists who knew all about Marfan syndrome and were readily available.” At the Health Fair, they discovered how Marfan syndrome could impact various aspects of Cameron’s body beyond cardiology, ophthalmology, and orthopedics. They were able to meet with a pulmonologist, an orthopedist specializing in feet and ankles, an allergist, and a geneticist who provided valuable insights on how the condition is passed down, genetic testing, and family planning. “I personally thought I knew just about everything I needed to know, but the Health Fair opened my eyes to many aspects I had never considered,” said Cameron. “I quickly learned that each doctor had their own variations of diagnoses and treatments.” According to Sue, the Health Fair experience taught

her the significance of having an army of health professionals on their side. “Not every health professional is created equal, especially when dealing with a rare medical condition like Marfan syndrome,” she said. “At the Health Fair, we realized the importance of finding specialists who truly understand the condition and can provide individualized health advice and treatment for the whole person.”

 Dr. Adam Bitterman, an orthopedic surgeon and foot and ankle specialist, examines Cameron. Circle: Dr. Adam Bitterman, Cameron, and Sue.

“I personally thought I knew just about everything I needed to know, but the Health Fair opened my eyes to many aspects I had never considered.” ~Cameron

4

Marfan.org

 The Hopkins Family, England Charlotte and Matthew Hopkins were determined to conquer logistical and financial obstacles in order to travel from England to attend the Health Fair. Their goal? Obtain much-needed medical assessments and advice for their 8-year-old daughter, Georgie, who was diagnosed at age 4 with Loeys-Dietz syndrome. “This was our first time at Conference,” said Charlotte. “In England, our experience has been that little is known about LDS. We really wanted to go all out and see the experts, including Dr. Dietz. It has taken four years for Matthew and me to dip our toes into the LDS research and connect with others. Prior to this, we were simply too frightened, things were still too raw. It has taken a long time to mentally be able to take this step to attend Conference.” Attending Conference was not an easy feat for the Hopkins family. They needed to raise funds to fly to the United States. To help with the financial challenges, they planned several fundraisers within their community. “My husband jumped out of a plane and completed a skydive the day before we flew to Chicago!” Charlotte

 Charlotte, Harry, Georgie, and Matthew.

said. “And both Harry and Georgie put on a big family 5K fun walk for all the local families in our community. We raised the full amount needed in just a few weeks.” Attending the Health Fair and Conference was a life changing experience for the Hopkins clan. They sought reassurance and expert advice and learned about specific medications, appropriate dosage, and important contraindications. “We will never forget meeting Dr. Dietz and Dr. Young in particular,” said Charlotte. “Georgie’s medication and care plan has changed as a result! The experience was so insightful and provided much-needed hope.” “We hope to save to attend all future Conferences going forward if we can,” she said. “To connect with others has been amazing as well as the research and information! For Georgie to meet little girls with LDS just like her has been beautiful. We hope to use this experience to help other families in the UK.”

 Neurologist Dr. Divakar Mithal assesses Georgie.

 Medical experts from across the country came together to provide much-needed assessments and testing for our community.

5

Fall 2023

FOUNDATION HONORS Volunteers at Conference A special night during Conference is the Welcome Dinner & Awards Ceremony where we recognize and honor incredible leaders and volunteers who have made considerable contributions to the Marfan, Loeys-Dietz, and VEDS communities. Our volunteers are at the heart of all of our accomplishments. 1. Cory A. Eaves (pictured with Board Chair Bert Medina) Priscilla Ciccariello Award 2. Jennifer Aguayo Community Leader Award 3. Alix McLean Jennings (pictured with Bert Medina & Cory Eaves) Cheryll Gasner Spirit of Service Award 4. Dr. Luciana Young, Seattle Children's Hospital, Antoine Marfan Award 5. The DEFY Foundation The VEDS Movement Cathy Bowen Award 6. Padilla Family (Heide & Germaine) Loeys-Dietz Heart of Gold Award The Foundation recognized additional community members who have made significant contributions to advancing the mission through awareness, education, fundraising, and other engagement activities. ★ Heart of the Matter Awards 7. Kendra DePinto, Marfan 8. Morgan Jozwiak, VEDS 9. Ashley Rose Koengutter, VEDS 10. Korochik Family (Regina), Loeys-Dietz 11. Liam Nelson, Marfan 12. Linda Tigges, Loeys-Dietz ★ Rising Star Awards 13. James Richardson, Marfan & MJ Young, Marfan ★ Teen with a Heart Awards 14. Cameron Allen, Marfan & Ezra Ames, Marfan 15. Riley Hadt, VEDS There are many opportunities to volunteer at the Foundation. Find the right fit for you at Marfan.org/volunteer .

1

2

6

7

11

10

13

6

Marfan.org

Brooke Roth Scholarship Funds Opportunities for LDS Community Members Our community

3

4

was saddened by the loss of Brooke Roth in March of 2023. Her parents, Jill and Matthew, started a scholarship fund in her memory whichhas a ff orded two members of our community the

8

opportunity to attend Camp Victory and two to attend the 39 th Annual Conference that took place in Chicago. We are grateful to the Roth family for helping and supporting others during a challenging time. “Brooke Roth touched the lives of everyone who knew her. Diagnosed with LDS at the age of five, she never let her challenges define her. Instead, with strength and courage, she overcame every obstacle that came her way. With a big smile on her face and a positive attitude, Brooke lived to help others. Her dream was to be an elementary school teacher and shape the lives of young people. Although Brooke’s bright light dimmed soon after her 20 th birthday, she is still helping others through the LDS scholarship program. Brooke would be so happy to know she gave families the opportunity to attend Conference in Chicago or attend the wonderful summer camp in Atlanta. We hope the recipients enjoyed this amazing experience in memory of our beautiful daughter, Brooke Roth.” ~ Jill and Matthew

9

12

14

15

7

Fall 2023

2023 Conference Sponsors THANKYOU Co-Hosts Contributor

Conference Planning Committee Stuart Berger, MD (Lurie) Division Head, Cardiology; Getz Professorship in Cardiology Associate Chair for Clinical A ff airs, Department of Pediatrics, Chief of Cardiology in the Department of Pediatrics, and Professor of Pediatrics (Cardiology), Medicine (Cardiology) and Pediatrics (Critical Care), Northwestern University Feinberg School of Medicine Benjamin Black, MBA (Lurie) Executive Director, The Heart Center Joseph Camarda, MD (Lurie) Attending Physician, Cardiology; Clinical Practice Director Associate Professor of Pediatrics (Cardiology), Northwestern University Feinberg School of Medicine Elizabeth Cappella, APRN-NP (Lurie) Advanced Practice Provider, Outpatient Cardiology Kelly Cox, MD (Lurie) Attending Physician, Cardiology, Assistant Professor of Pediatrics (Cardiology), Northwestern University Feinberg School of Medicine Kali Hensley, RN, BSN (Lurie) Registered Nurse S. Chris Malaisrie, MD (Northwestern) Professor of Surgery in the Division of Cardiac Surgery at Northwestern University and Attending Cardiac Surgeon at Northwestern Medicine, Co-Director of the Marfan Clinic, Bicuspid Aortic Valve Clinic, and Thoracic Aortic Surgery Program within the Bluhm Cardiovascular Institute Judith Marshall, MS, APRN-NP, FNP (Lurie) Family Nurse Practitioner, Genetics, Genomics, and Metabolism Carrie McCaw (Lurie) Director, Cardiopulmonary Labs Lisa Wilsbacher, MD, PhD (Northwestern) Assistant Professor of Medicine (Cardiology) and Pharmacology, Co-Medical Director of the Marfan Syndrome and Related Disorders Clinic Photography Timothy D. Joyce Photography

Sponsors

VEDS Track Sponsor

The mental health programming and initiatives at this Conference are supported by a RARE Mental Health Impact Grant from Global Genes.

8

Marfan.org

Generational Care Provides Continuity Debra Theine has experienced Marfan syndrome’s impact as a daughter, patient, mother, and grandmother. Her first experience with Marfan syndrome was following her father’s aortic complications in late adulthood, prompting his diagnosis. She subsequently was diagnosed herself, and eventually required a prophylactic aortic root replacement. Carrying her family’s experiences, Debra and her husband, Dan, have raised four boys and five grandchildren with Marfan syndrome, guiding them through all stages of living with a chronic condition, including the challenges of transitioning from childhood to adult care. “We started going to the Marfan Clinic in 1993 when our oldest boy Mark was 10, our twins, Mike and Kyle,

 Debra and Dan with their four children

can positively impact well-being. With shared medical histories and experiences, medical professionals can tailor treatments more e ffi ciently and e ff ectively, fostering a deeper understanding and support system within the family. The Theine family has been fortunate to experience continuity of care for all four generations who are

were eight and our youngest, Paul, was six. Our whole family would go to our appointment together,” said Debra. “We’d get echos and then receive our individual test results as a family. Dan and I believed everything should be openly shared. That way we could support each other whether the news was good or bad. We would also plan family pizza after the appointments to discuss the day and spend time together.” “Now, our boys have grown to be fathers and take their own kids to the same clinic they went to as boys,” Debra said. “Marfan has its challenges, but on the other hand, it definitely drew our family closer together. Four generations of our family have grown up with sta ff

seen by the same providers within the Marfan and Related Connective Tissue Disorder Program at Children’s Wisconsin. The program is sta ff edby cardiologists, geneticists, and other subspecialists who have training in combined internal medicine and pediatrics programs, allowing for multigenerational care for family members with hereditary aortopathies of all ages. Lindsey Katzmark, APNP, who cares for the Theine family at the Herma Heart Institute, says that multigenerational care allows the provider a special opportunity to learn the intricacies of a patient and a family. “You become invested, knowing

 Three generations of the Theine family

and caring for the family together,” said Lindsey. “I enjoy family visits and look forward to the opportunity to care for everyone in the room.” To learn how to establish a care team or find a coordinated clinic that provides expertise in genetic aortic and vascular conditions, visit Marfan.org/clinic-directory .

at Children’s Wisconsin who we consider our extended family and have cared for all of us for nearly 30 years now…and counting!” Continuity of care across generations for a family with the same medical condition like Marfan syndrome

“Marfan has its challenges, but on the other hand, it definitely drew our family closer together.” Fall 2023 9

“These promising research studies could lead to advancements in new diagnostics and treatment options for those living with Marfan, Loeys-Dietz, VEDS, and other genetic aortic conditions,” said Josephine Grima, PhD, chief science o ffi cer for the Foundation. “By investing in researchers, we invest in the lives of our community and their future.”

Thanks to the generosity of our supporters, the Foundation awarded five new research grants. These two-year grants include two Innovator Awards and three Victor McKusick Fellowship Awards. The research projects focus on aortic dissection and thoracic aortic aneurysms. About our grant recipients and their research: FOUNDATION ANNOUNCES $500,000 IN NEW RESEARCH GRANTS

 Bert Callewaert, MD, PhD – Ghent University An appraisal of the contribution of neural crest lineages in a zebrafish model for aortic dissection $100,000 2-Year Innovators Award Previous studies using human cells have indicated that dysregulation of neural crest cells (cells that arise early in embryonic development) contributes to thoracic aortic aneurysm in Marfan syndrome, Loeys-Dietz syndrome, and bicuspid aortic valve. Since several signaling molecules are important for neural crest cell development and have been implicated in the pathogenesis of these syndromic forms of aortic dilatation, Dr. Callewaert’s team will

investigate how dysregulation of these pathways alters neural crest cell behavior and contributes to aortic root widening in a living zebrafish model. If successful, this could help identify future therapeutic targets that could be valuable for the treatment of a ff ected individuals.

 Ketan Ghaghada, PhD – Baylor College of Medicine Prediction of aortic dissection and rupture in Marfan

syndrome using nano-radiomics $100,000 2-Year Innovators Award

Non-invasive diagnostic methods that enable early detection and prediction of aortic disease progression leading to dissection and rupture is an unmet need for individuals with Marfan syndrome. Using an established mouse model, Dr. Ghaghada and the study team will investigate a novel imaging method for prediction of aortic dissection and rupture in Marfan syndrome. This work is significant, because it focuses on the understanding and prevention of

life-threating cardiovascular disease. Early diagnosis and improved prognosis would aid in the development of new ande ff ective medications to prevent the progression of fatal aortic disease and save the lives of individuals with Marfan syndrome.

10

Marfan.org

 Daniel Martin, PhD – Cleveland Clinic Lerner Research Institute Mast cell chymase in Marfan syndrome thoracic aortic aneurysms $100,000 2-Year Victor McKusick Fellowship

There are currently no treatments for slowing aortic weakening, and major surgery to replace the aorta is the only current option. Dr. Martin’s research has identified a proteolytic enzyme that may lead to weakening of the aorta in individuals with Marfan syndrome. This enzyme is not made by the aorta cells but instead by immune cells which enter the aorta when the walls begin to weaken. Dr. Martin and the study team aim to determine if removing this enzyme from a mouse model of Marfan syndrome will reduce or prevent aortic damage. This work could lead to the development of a blood test to identify aortic weakening and may be useful in the study of other conditions where aortic aneurysms are a common occurrence.

 Leda Restrepo, PhD – Johns Hopkins University Epigenetic determinants and mechanistic insights into the role of the long non-coding RNA Meg3 in the pathogenesis of aortic aneurysm $100,000 2-Year Victor McKusick Fellowship A recurring issue for individuals a ff ected by Loeys-Dietz syndrome is a progressive dilatation of the aorta, leading to aortic aneurysm. An increasing number of studies have suggested associations between non-coding RNA and a predisposition to develop aneurysms. To examine the molecular mechanisms of how specific long non-coding RNA regulates aneurysm pathogenesis in Loeys-Dietz syndrome, Dr. Restrepo’s team will perform in vitro

and in vivo experiments with mice that repeat the clinical signs that individuals with LDS have, and they will test if this long non-coding RNA can modulate the progression of the aneurysm. This work could lead to the identification of a therapeutic agent for aortic aneurysm.

 Simone Saitta, PhD – Politecnico di Milano Machine learning for identification of geometrical and biomechanical

markers of aortic dissection in Marfan patients $100,000 2-Year Victor McKusick Fellowship

Choosing the right time to perform aortic graft surgery is essential for optimizing the care of individuals with Marfan syndrome. Given the seriousness of aortic dissection and the benefits of surgery to prevent it, there is a need to find new ways to decide when surgery is required. Artificial intelligence technology can be used to quickly and accurately analyze large amounts of medical imaging data of the aorta, extracting both conventional (like size) and

novel measurements (like curvature, angulation, tortuosity). Informed by these features, machine-learning models can be tuned to predict the risk for individuals with Marfan syndrome to developing aortic dissection. A main goal of Dr. Saitta’s study is to analyze aortic features in individuals with Marfan syndrome to find new ways to predict who is at risk for complications that may lead to aortic dissection.

To learn more about our Research Grant Program, including funded grants, visit Marfan.org/research.

11

Fall 2023

NEW VOLUNTEER LEADERS We welcome new members of our Board of Directors and Professional Advisory Board as well as those taking on new leadership roles as o ffi cers and advisors. Our volunteer leaders come from diverse backgrounds and play a critical role in the success of the Foundation. We are grateful for their time, talents, counsel, and commitment to serving our community.

BOARDOF DIRECTORS

Bert Medina Chair

Cory A. Eaves Immediate Past Chair

Caryn E. Kau ff man, CPA Treasurer

Patricia McCabe Secretary

Joaquin Ramos, Jr. Director

New Board Roles

Gil Bashe Director

Brandy Banks Hotchkiss Director

Karen Murray Board Advisor

Alix McLean Jennings Board Advisor

PROFESSIONAL ADVISORY BOARD

Visit Marfan.org/about/team or scan the QR code to view the complete listing of the Foundation's Board including: • Board of Directors • Professional Advisory Board • Scientific Advisory Board

Melissa Flint, PsyD, FT, CCTP Midwestern University

Bart Loeys, MD, PhD University of Antwerp

12

Marfan.org

Beyond the Borders: The Foundation Collaborates with Partners Around the World Marfan, Loeys-Dietz, and VEDS a ff ect people around the world. That’s why the Foundation partners across the globe to provide educational resources, webinars, fact sheets, and our website in 12 languages: Spanish, Italian, German, French, Dutch, Swedish, Portuguese, Suomi (Finnish), Mandarin, Japanese, Hindi, and English.

Throughout its history, the Foundation has provided assistance as requested to volunteer-led groups and other Marfan associations around the world. Now, with a commitment to establish an expanded international presence, including an international federation of stakeholders that would dynamically collaborate, share valuable knowledge, and drive research innovation, we are more committed than ever to dedicate additional resources to helping people live longer and better with genetic aortic and vascular conditions, regardless of where they live. Earlier this year, the Foundation named Eileen Novins Masciale as its first Chief Global Business Development O ffi cer. “While Marfan, Loeys-Dietz, and VEDS a ff ect people similarly, we recognize that attitudes about living with a life-long genetic condition vary country to country. There are also important di ff erences related to access to care, healthcare, and insurance. We want to be able to responsively provide information to a ff ected people and their families, as well as to medical professionals, so that our collaborations outside the US are meaningful and have maximum impact on those living with Marfan, Loeys-Dietz, and VEDS,” said Eileen. “To this end, we want to collaborate with key medical experts and volunteer leaders around the world so that, together, we can be there for this community.” The Foundation is already taking critical steps as an international leader for the Marfan, Loeys-Dietz, and VEDS communities. Among the highlights:

• In June, Eileen and Josephine Grima, PhD, the Foundation’s chief science o ffi cer, attended the First International Loeys-Dietz Research and Patient Education Meeting in Antwerp, Belgium, hosted by Dr. Bart Loeys. There, they met with volunteer leaders, doctors, and researchers on Loeys-Dietz and discussed future opportunities. • In July, the Foundation hosted representatives from DeltaHealth in Shanghai at the 39 th Conference in Chicago. We learned about their expertise as well as the Marfan patient organization in China and brainstormed ways we can work together. • The Foundation’s Third Spanish-Language Summit is planned for January 2024, and additional programs for people who speak Spanish are also in the works. • We are exploring opportunities for additional international patient meetings in Europe in the summer of 2024 in conjunction with research meetings in Norway and the UK. Watch for more international event news, including educational webinars and in-person events, coming soon. If you have any questions or suggestions, please contact Eileen at emasciale@marfan.org.  Marfan Foundation meeting in Chicago in July. Front row: Jigauo Chang, Chinese Marfan Organization, and Michael Weamer, President and CEO, The Marfan Foundation. Back row (left-right): Hartnett Xue, manager of CMO office, May Liu, human resources, Dr. Kaitao Jian, cardiac surgeon, Josephine Grima, PhD, and Eileen Novins-Masciale.

 Dr. Hal Dietz (far left) Dr. Bart Loeys (third from right) Dr. Josephine Grima (front center) and Eileen Novins-Masciale (fourth from left) are pictured with a group at the First International Loeys-Dietz Research and Patient Meeting in Antwerp.

13

Fall 2023

Upcomin g Events Get Connected, Learn, & Live Better!

IN-PERSON Educational Events In collaboration with medical partners, we host regional symposia across the country throughout the year. These educational events provide an opportunity to learn from and meet with local medical experts on Marfan, Loeys-Dietz, VEDS, and related genetic aortic and vascular conditions and provide you with tools to live a better life. Whether you have a condition or are the loved one of someone who does, you will be able to connect with others like you in your area. Some of the symposia also o ff er fun programs for children (ages 5-12) so you don’t have to worry about childcare. Check the website at Marfan.org/ educational-opportunities for upcoming information and registration. ★ October 28 Pittsburgh Regional Symposium Partner: UPMC Heart and Vascular Institute ★ November 4 Los Angeles Regional Symposium (English and Spanish Tracks) Partner: Genetic Aortic Related Disorders (GARD) Center at the USC Keck School of Medicine ★ April 13 Austin Regional Symposium Partner: University of Texas-Austin ★ May 11 Portland Regional Symposium Partners: Oregon Health & Science University, The Ehlers-Danlos Society

UPCOMING Walk for Victory Events  Cleveland, October 21

 Tampa, January 6  Houston, March 2  Phoenix, March 3

 Indianapolis, October 22  Nashville, November 4

Get connected with your community! Find a Walk for Victory in a city near you at Marfan.org/walk .

3 RD ANNUAL Evening with Heart Scottsdale November 2 – This exciting

3 RD ANNUAL Houston HeartWorks Gala December 1 – Joinus in Houston for a memorable evening of cocktails, dinner, entertainment, and great company! We will also honor those who have made outstanding contributions to the community.

event will feature a wine tasting with five wines

and food pairings for each, along with light bites, open bar, silent auction, games and muchmore!

Get your tickets today and view other upcoming special events at Marfan.org/events . All proceeds raised from both events will go toward creating a brighter future for those living with Marfan, Loeys-Dietz, VEDS, and related conditions.

VIRTUAL Spanish-Language Educational Events Free Webinar – November 9

Aortic Surgery and Connective Tissue Conditions: What You Should Know! Vicente Orozco-Sevilla, MD, Baylor College of Medicine Save the Date for our 3 rd Virtual Spanish-Language Summit on January 20, 2024. Marfan.org/educational-opportunities

SCANTHE QRCODE to read about one community member’s experience at a symposium.

14

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 – August 10, 2023. These donations support our programs and services that create a brighter future for all those living with Marfan, Loeys-Dietz, VEDS, and related conditions. Donations to Walk for Victory are not included. DONATIONS IN HONOR & MEMORY

INHONOROF

Peter & Katherine Kinney Wendy & Fritz Klaesi Dawn Knowles Jameson Koehn Allyson Koengeter Ashley Rose Koengeter Al & Brenda Kravitz FoxyKusin SaraKyle Dr. Ronald Lacro Kincaid & Evie Leckie PrestonLi Sinclair Li Karl Lindquist Eleanor Magel-Lubka Tara & Luci Luetkemeyer DanMakano ff Isabella Marin Grant Martin Peyton Matthews Emma Rose Mazurek Brenda McBroom Taborski McClellen Susan Michelle Macon & Tobie Mitchell The Mooney Family Claire Moore Madeline Moore Elissa Morris Danny Murphy Karen Murray Christy Nath Eli Neisius Theresa Newton Dominga Noe William Oxman Kathleen Paciotti Noah Padilla Victoria Falcone-Pawar Barbara Petrucelli Elizabeth & Mark Petty Kendall Podsen Paula Pollaro Kristi Posival AnnePower Charlie Primeau Elysia & Zaya Reed Nicole Reiner EllaReis James & Naomi Richardson Douglas Richter Emilio & Xaeed Rico Amanda Rivera LJ Salm Carlee Schwartz Eleanor Magel Sophia Maggio Mary Maggio LuluMaher

Alex Sekela LillyShaw Conor Sheen Vicky Ann Simmerman Kelly Gann Smith Michelle Smith

Nancy Conger George Covington, Jr. Nancy Daeges Blaise Dafoe DougDavis Louis Delia John DeMasi Duke Devaney J. Doehring Lawrence J. Dolan Michael Enbar Beverly Feinstein Robert Fink Lewis Fisher Eric Fitzgerald Mark Fosdal Olasupo Fowowe II Andrew Gross Glenda Henry Richard & Donald Hill MaxHommel Ross & Kathleen Hooker Matthew Ingra ffi a Mike Ireton Allen “Terry” Jacobs Christopher Jedda John David Johns Bill Johnson Michael Jordan James Matthew Holley, Jr. Kathleen Knox Patrick Kremer Margaret McCabe Kristl Alexa Lawrence Catherine Lazorcik Grace Friend Julie Kurnitz Brian Gabel Jami Gahr Steve Gallo

Kimberly Merkel Connor Metz Robert Miller

Cameron Allen Angelo Asimakopoulos

Aaron Mitchell Thomas Miyake Luis Daniel Rodriguez Montesino John L. Moore HuckMoore

Lauren Atherton Filip Avramovic Leo Azarrafa

Evan Smolen Avery Somers Dr. Paul Sponseller Chris Stuart Samantha, James, & Jordan Tarpley Lauren Tenney

MarenBain NoraBaker Annie Barlow JimBarlow Carl Bartizek Ricardo Belchior Adrianne Knowledge-Bey Teagan Bodnar JenBodnar Akintayo Bolorunduro Sebastian Brady Dr. Alan Braverman & Family Sean Broadbent Eileen Burchett Bridgette Camasso Harrison Cash August & Milo Champlin Jessie Collom Dominick Corso Dr. Joseph Coselli

Andrew Morrell Melissa Mosca Pam Moultrup Patricia Mueller Lauren Naddy Joseph Neustadt JonNiemi Andrew Nikithser Casey Nilles Cathleen Nilles Rodney Oberle Judith Powell Orr

Andy Tenney Lauren Testa Kayley Tigges Mac & Farran Toomey Jean Versteeg Adam Warren Alexandra Weygand Luke Wiggins Isabella Williams Connor Wilson Sam Woodhouse Katie Wright

Daniel Miriti Pacheco Gino & Betty Pagotto Christopher Paulsen

Connor Porter Matthew Rau Briley Reiland Ann Reinking Tammy Ann Richardson Tamra Robertson Rochelle Lynn Rolnick Brooke Ashley Roth Louis Satriale Ned Schoepoerster Jeremy Semano ff AvaShaw Beverley Shepherd-Sherman

Joy, Adriana, & Gianni Xhudo Tony, Steve, & Emma Yasick Heather Young Joyce - Nanny Young IN MEMORY OF Carol, Adrian, & Elias Adame David Allan Virginia S. Anderson Angelo Asimakopoulos Omar El-Azhari MaryBaer Ryan Clinton Bailey JimBarlow Scott Bergkamp Jenn Bodnar Andrea Bolton Ralph Bombardiere Stephanie Braconnier David Braverman Carol Brennan Jennnifer Bu ff one Brody Bullock LeahBurke Marilyn Cargile Andie Carpenter Mark Caruso SarahCayo Aileen Cheng Auntie Laurie Chmielecki

Charlie Cowden Caleb Crenshaw Arielle Damma The D’Apice Family Alex & Mike DeCoursey Earl Devaney The Doehring Family Harrison Donohue Tyler Farley The Feinstein Family Delaney Fisher Maia Fleener EllenFord

Linda Sinclair Donald Smith Casey Sprouse Eleanor Tarr Diane Thomas Carson Toane John Torode ColeTran

Lita Forster J.A.G. J.A.G.

Betty Lelekidis Jack Lemmer MaryLobo Peggy Lucas Anthony Lucido RudyLuna

Christa Puccio-Gallo The Ginsberg Family

Joseph Giordano Marty Goldberg Kristin Goodwin Isabella Green Scott Griebel Toby Hamilton

Joseph Verilli Jennifer Volpe Luke Wagner Alana Wesley MaryWhite Mary Alice Delcambre Hebert White Linda Cheryl Williams Bart Willuweit Howard Winkler Mike, Steve, Tom, Chris & Gene Yasick Elizabeth Joyce Yount Jeremy Zelman

Charlotte Lusschen Paul T. Mahoney II

Frank Marin Ally Marisch

Iris Hawkins Peter Henry Christian D’Angelo Je ff ries

Norman Martin Albert Matsuura Erica Mayton

Sydney Jenkins Cassie Jennings Cooper Jones Jerrod Jung MoJurgens Jameson Justen Amelia Kasper

Scout McCauley Wade McConnell Rory McGowan James Daniel Meckler Margaret Mendat Marsha Mendell

Kylie Christensen Priscilla Ciccariello Steven Ciccariello Jessie Collom

15

Fall 2023

22 MANHASSET AVENUE PORT WASHINGTON, NY 11050