Connective Issues Spring 2023

Spring 2023

JOIN OTHERS FROM ACROSS THE COUNTRY AT CONFERENCE

FAMILY TRIPLES DONATION THROUGH COMPANY MATCHING

FOUNDATION WELCOMES NEW DIRECTOR FOR THE VEDS MOVEMENT

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.

May is Mental Health Awareness Month, which is the perfect time for us to announce the expansion of our website and mental health o ff erings to our community. We recognize the important role that mental health plays in overall well-being, and we are committed to providing resources and support to all those in need of it. I hope you will explore our expanded webpage and take advantage of the services and support we o ff er to improve your quality of life.

We all know that having a sense of community is essential to good mental health, and spring has provided numerous opportunities to connect through our Walk for Victory and HeartWorks events as well as our regional symposia. Thanks to the dedication and hard work of our community volunteers and hospital partners, we can bring the community together and raise essential funds to further our mission. We are also providing an opportunity this summer for people from across the country to gather as a community to connect and learn at Conference, July 13-16, in Chicago. We have planned a fantastic educational program led by many of the top medical experts in Marfan, Loeys-Dietz, VEDS, and related genetic aortic and vascular conditions. There will also be many opportunities to meet others impacted by the same condition as you and/or your family. I hope you are planning to join us. Finally, I want to express my deep appreciation for your ongoing support of the Foundation. Together, we are making a di ff erence and improving the lives of those a ff ected and their families. I look forward to achieving greater success as we continue to grow as a community here in the US and abroad.

Learn more and get involved at Marfan.org.

CONNECTIVE ISSUES Spring 2023 VOLUME 42 | NUMBER 2 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.

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: Discover how some in our community like Finnegan Chu successfully navigate fulfilling their passions while living with a connective tissue condition. Read the article on page 6.

The Foundation is excited to host its 39 th Conference in Chicago, July 13-16. This educational event, which will be held in collaboration with Ann & Robert H. Lurie Children’s Hospital and Northwestern Medicine, brings together community members from across the country, including a ff ected individuals, family members, and healthcare providers, to share experiences, learn from each other, and stay up-to-date on the latest developments and research in Marfan syndrome, Loeys Dietz syndrome, VEDS, and related conditions. “We invite you all to join us at this year’s Conference where we will gather to hear the latest in research, exchange ideas and knowledge, and build valuable connections,” said Michael Weamer, President & CEO, The Marfan Foundation. “We thank our esteemed co hosts, Ann & Robert H. Lurie Children’s Hospital and Northwestern Medicine, for their support and making this event possible.” Conference o ff ers a variety of in-person educational sessions, interactive workshops, and networking opportunities. Attendees can attend presentations from medical experts on topics such as medical management, cardiac surgery, orthopedic issues, pain management, and aging with a connective tissue condition. The workshops cover a range of subjects, including yoga and mindfulness, nutrition and exercise, and coping with chronic illness. Conference events will be held at the Palmer House Hotel. Health Fair Once again, we are o ff ering a free Health Fair for registrants on July 13-14. The Health Fair, which will take place at Ann & Robert H. Lurie Children’s Hospital, is an opportunity for attendees to visit with multiple medical professionals to get questions answered and discuss medical concerns. Visit Marfan.org/conference for details.

Learn more and register at Marfan.org/conference.

Educational Opportunities The General Session on Saturday, July 15, will feature the latest information on these conditions, including updates from the new ACC/AHA guidelines for the management of Marfan syndrome, VEDS, and LDS for adults and children; aortic and vascular surgery; cardiac imaging, GI issues; and mental health. New this year is the option to view the morning General Session via livestream on Saturday, July 15, from 8:30 am - 12:00 pm Central. This will make several important presentations accessible to individuals who are unable to attend due to distance or health-related concerns. Continued on next page... “Last year was our first Conference and we are so grateful to have attended. It was a life-changing event for my whole family. My daughter has felt so lonely since finding out about her diagnosis. Her demeanor changed completely during Conference. I have never seen her so happy, and she felt so comfortable socializing and getting to know her new friends!”

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Following the General Session, attendees can choose from30di ff erent small group workshops presented by medical experts on topics such as medical management, cardiac surgery, orthopedic issues, pain management, aging with a connective tissue condition, and many more. Sunday workshops, which are led by community members and medical professionals, will focus on mental health and provide 30 di ff erent workshops options. (See mental health grant sidebar). Children & Teen Programming Wealsoo ff er special programming for children and teens. Children ages 5-12 will have fun participating in an onsite camp experience run by our partner, Camp Joy, and adapted for the Conference setting. Children will enjoy group meals, icebreakers, and fun activities including games, crafts, science, and more. Teens will have a group dinner, a Q&A breakfast with medical professionals, and a local field trip. They can attend small-group workshops just for teens that promote positive mental health and wellness. All children and teen activities encourage bonding, provide medical education, and build self-esteem to complete a well rounded Conference experience. Social Events In addition to the educational sessions, Conference o ff ers a variety of social events and activities to promote camaraderie and fun. There will be a welcome dinner and awards ceremony, Creating Connections luncheon, and Victory Party. These activities provide opportunities for participants to connect with each “Being able to meet others who are a ff ected 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 experienced.”

Foundation Receives 2023 Mental Health Impact Grant The Marfan Foundation received a grant from Global Genes to support mental health programming and initiatives at the 39 th Conference. This is the first time Global Genes has o ff ered RARE Mental Health Impact Grants, designed to improve the health and mental well being of the communities served. The Foundation is one of 12 recipients out of 130 applicants. This grant support will enable the Foundation to provide the 400+ Conference participants a better understanding of the need to focus on mental health in addition to physical health, gain increased knowledge about mental health-related topics, and learn about tools and resources available. While mental health content will be incorporated into many workshops throughout the event, an entire day will be dedicated to discussing mental health challenges with 30 workshops and sessions on a variety of topics designed to raise awareness, educate, and provide the tools and resources for people to take action. The workshops feature outside experts with special expertise in mental health and chronic health conditions. Sessions will address such topics as coping with trauma and surgeries, stress and heart disease, recognizing signs of mental health issues, and getting help. A number of facilitated support groups will also be held for targeted audiences including moms, dads, and partners and spouses, and they will include topics like grief and loss and self-care. “I loved being able to have the time to learn and engage in all the di ff erent topics 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.”

other on a personal level and build relationships that can last a lifetime. WATCH A VIDEO  from our co-hosts and medical partners

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The 14 th Annual HeartWorks St. Louis gala on March 11 was one to remember! The night was filled with awards, stories, celebration, and, most importantly, generosity. Thanks to the leadership of co-hosts Dr. Alan and Rebecca Braverman, the event raised more than $350,000 for the Foundation’s programs and services. Over 300 guests, including prominent members of the medical and business communities, as well as the Marfan, Loeys-Dietz, and VEDS communities and their loved ones, came together to celebrate this incredible cause. The night featured moving stories and heartwarming speeches as we honored some truly A highlight of the night was honoring Reed Pyeritz, MD, PhD, an international authority on the genetics of cardiovascular disorders, with this year’s Lifetime Achievement Award. For over 40 years, Dr. Pyeritz has dedicated his life to improving the diagnosis and treatment of cardiovascular syndromes. His groundbreaking research on Marfan syndrome has paved the way for countless patients to receive better medical care, and he was instrumental in the creation of The Marfan Foundation as we know it today. We also had the pleasure of recognizing Sanjeev Bhalla, MD, a Professor of Radiology and Chief of Cardiothoracic Imaging at Mallinckrodt Institute of Radiology (MIR) at Washington University School of Medicine in St. Louis, with the Hero with a Heart Award. He has won multiple teaching awards, and in 2015, he was named Vice Chair for Education, where he helps oversee MIR’s programs for medical students, trainees, and alumni. We can’t thank everyone enough for their support and generosity! To view all upcoming events, visit the calendar at Marfan.org . HeartWorks St. Louis remarkable individuals. Award Recipients

 Dr. Sanjeev Bhalla was presented with the Hero with a Heart Award (with Dr. Alan and Rebecca Braverman).

 Dr. Braverman presented Dr. Reed Pyeritz with the

Foundation’s Lifetime Achievement Award.

Meet Ryan Director of The VEDS Movement

The Foundation is excited to announce Ryan Rodarmer, MS, is the new Director of The VEDS Movement. Ryan, from Grand Rapids, Michigan, has a BS Degree in Biology and a Masters in Genetic Counseling. He is also a survivor of a type A aortic dissection due to hereditary thoracic aortic disease. Ryan has educated, advocated for, and comforted many families a ff ected by VEDS, among other genetic aortic and vascular conditions. He has also assembled healthcare teams to prepare for medical emergencies. “As a genetic counselor and type A aortic dissection survivor, the thrill is indescribable when you can look back and see how every opportunity, every connection, and every experience (including those challenges that life has unexpectedly thrown at you) has so clearly led you to a role where every ounce of that experience can be harnessed to make a meaningful impact,” said Ryan. “I’d like to recognize and thank Katie Wright for the unbelievable work she has done in launching The VEDS Movement and for her commitment to improving the lives of a community that means so much to me.”

Ryan was with Spectrum Health in Grand Rapids for 16 years where he provided comprehensive genetic counseling services both

in-person and virtually across cardiology, oncology, and pediatric specialties with a focus on cardiovascular genetics as lead cardiac counselor for 16 years. Most recently, Ryan worked with The SADS Foundation as a project manager to increase the uptake of cardiogenomic testing for SADS. The SADS Foundation supports patients and families who are dealing with genetic conditions that cause sudden cardiac death. A volunteer Director of Genetic Education for Aortic Hope, Ryan develops educational material and psychosocial support via online, print, and social media content. Ryan is also an advisor to Think Tank Aorta’s leading edge #ChatAortaAI project and has extensive experience in social media, website design, and content creation.

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Pursuing Your Passion While Living with a Connective

Tissue Condition Living with Marfan syndrome, Loeys-Dietz, VEDS, or another genetic aortic or vascular condition can be challenging, but it doesn’t mean that people need to sideline their passions. Pursuing a passion can provide a sense of purpose and fulfillment as well as act as a form of therapy to help cope with challenges that may come with having one of these conditions. Many in our community have overcome hurdles and pursued their interests despite any limitations, and sometimes it takes creativity and perseverance to find the right fit. Whether it’s art, music, sports, or any other activity, it’s important for those in our community to find ways to engage in their interests while managing their health. The first step is to consult with a healthcare provider to determine if the activity is a good, healthy fit and receive expert advice. Next, it is important to listen to one’s body. This means being aware of how certain activities may a ff ect your health and being willing to make adjustments as needed. Finding a supportive community is also helpful. This can include friends and family who understand the challenges, as well as support groups and online communities like those o ff ered by the Foundation. These networks can provide encouragement, advice, and a sense of belonging.

 Carson Flanagan, 18, Marfan Syndrome “One of my favorite things to do is play golf. My dad is a big golfer, and I have been around the sport from an early age. After having to undergo the Nuss procedure, I decided to discontinue playing basketball and focus strictly on my golf game. Golf has allowed me to continue to participate in a sport for my school as well as allowing my body to remaining active. Golf is something that anyone can try and participate in as long as you take care of yourself. It is a great way to get outdoors with family and friends and enjoy nice days on the course!”  Finnegan Chu, 22, Marfan Syndrome “Storytelling and designing with respect to a character and actor’s truth is ultimately what I’m most passionate about. Marfan being a part of my identity has only opened me up to more perspectives and approaching active collaboration with empathy and understanding. Freelance work (especially theatre) is something that requires a lot of discipline and focus, but also knowing your limits and advocating for yourself. Living with Marfan has only made me more aware of myself and standing firm in my boundaries in many aspects of my life. Knowing yourself and advocating for yourself is always easier said than done, but remaining truthful to myself and my values has kept me in a much more secure place than allowing others to dictate that for me.”

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 Peter Donato, 28, Loeys-Dietz Syndrome “I always knew I wouldn’t be able to keep playing basketball. When I got to high school, I knew my aorta was approaching the magic number for surgery. I made the decision to step o ff the court, and I asked the boys’ basketball coach if I could be the manager. I did that for the four years of high school and also managed girls’ softball. When I got to college, I talked with the women’s basketball coach and joined the team as the manager and was able to do that throughout college. I was still able to be a part of athletics, which I love, but I was doing it in a way where I didn’t have to worry about my health.” (Peter is pictured far left.)

 Brooke Pulliam, 23, Marfan Syndrome

“Dance has always been a huge passion and hobby of mine, and I danced for 15 years, from age three to 18. Everyone at the studio always made me feel included and just let me do what I knew I could do. You know your own limits! Having great support around me was super helpful in dealing with Marfan syndrome while pursuing my passion. My advice for others is to not focus on all the things you can’t or are told not to do, but focus on what you can do!”

 Samantha Noe, 22, Marfan Syndrome “When I was growing up I was constantly being told what I wasn’t allowed to do, so trying to figure out what I was passionate about was tricky. After finding the culinary/hospitality field, I realized it’s something that I really enjoy and am good at. Even though it can be physically demanding and not always the easiest with my condition, with adjustments, I have found a way to make my passion something that works with me instead of against me. Don’t miss out on things just because you think you aren’t allowed to do them. Talk to your doctors and see what they say. Don’t be afraid to try di ff erent things and if they are too hard at first see if there is a way to adapt/make it work for your body. I have found that listening to my body and communicating with those around me is the most important thing.”

 Grace Barnhart, 18, Marfan Syndrome “I am a Marfan syndrome fighter and caregiver to my dad. Having Marfan syndrome comes with physical boundaries. I was a sideline cheerleader for nine years, but a few months before I started high school, I was told I had to quit to keep myself safe. It broke my heart, but I used this experience to start a new

passion. I managed my high school’s football team for four years. I was at practices and games helping the team with anything needed. It was di ff erent from my original passion, but I was still a part of the football (on-field and sideline) experience and loved every minute of it! Don’t let your boundaries stop you, let them empower you. If one plan changes, start a new path!”

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 Elliot, age 7

 Ryan with his aunt at the family garage sale.

 Colin, age 5

FAMILY TRIPLES THEIR DONATION after Companies Match Funds

Ryan Johnson and his family wanted to raise money to support The VEDS Movement so they came up with an idea for a multifamily garage sale, spearheaded by his mother, Judy. Ryan’s sister-in-law and nephews, Colin and Elliot, have VEDS, so the family decided to organize the event to raise money and awareness for the condition. The event, held in the fall of last year, was a huge success in every way, including $15,000 for The VEDS Movement. “With a lot of support from family and the community, the idea gained traction,” said Ryan. “The garage sale was a lot of work, but the number of volunteers who stepped up to help was amazing and very humbling. People from all over gave donations and volunteered.” The garage sale initially raised $5,000, and Ryan decided to see if the two large companies he works for would match the donation. He discovered both used the Benevity app for matching. He then validated The Marfan Foundation was an approved nonprofit and confirmed that the donations could be matched twice, one per company. Once he had his donation receipt, he was able to upload it to the app for approval, and less than a month after submission, he received final

approval and another $10,000 for The VEDS Movement. “The matching process was much easier and quicker than I thought it would be,” said Ryan. “Companies are making it easier to accomplish and, on top of that, they are encouraging employee participation and engagement in charity, volunteering, and philanthropy.” Ryan’s sister-in-law, Karen, said the family was so overwhelmed with gratitude for the support from their friends and family who donated their time, energy, belongings, and financial support to make the garage sale such a success. “There is a significant need for more awareness, resources, and research to support our VEDS community, and I'm glad that our e ff orts were able to contribute to The VEDS Movement in these areas,” said Karen. “It was also just such a special moment for our kids to participate and contribute their own energy and belongings to this event and to witness the love and support of this huge team of people fighting for us and doing what they can for all of us who su ff er from VEDS.” To learn more about multiplying your donation to the Foundation, including the Loeys-Dietz and VEDS divisions, visit Marfan.org/give .

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“God kept me here for a reason,” said Michael Redd, 41, of Georgia. “To tell people about Marfan syndrome.” Michael’s wife, Teresa, added, “If we can save a life, we will tell anyone our story.” It’s a story that could have ended when Michael was 14 years old, when he had his first aneurysm. Michael had many of the physical signs of Marfan syndrome early on. He was tall and gangly, had hypermobile joints and hammer toes, and had eye issues that are common in people with Marfan syndrome. He felt di ff erent and was called a “friendly giant.” Yet he had never been diagnosed with Marfan. Michael survived the surgery for the brain aneurysm, but serious medical issues followed, culminating with chest pain in 2014 that led to aortic surgery. Still, the underlying cause had not been identified and Michael was lucky to be alive. It wasn’t until a month after aortic surgery that Michael had genetic testing. Marfan syndrome was confirmed. After learning about Marfan and thinking of his family medical history – other relatives who had many of the same physical features and died early deaths due to aneurysms – Michael knew that the diagnosis made sense. The next step was for Michael to get his two young daughters tested. Both Michelle and Mariah were then confirmed to have Marfan. The family takes Marfan syndrome seriously. They are grateful that they know what it is and are aware of the signs of an emergency. And they have sought out the medical care of an expert physician on Marfan syndrome, Dr. Glen Iannucci, Director of the Aorta & Vascular Program at the Children’s Heart Center, Children’s Healthcare of Atlanta, who helped them understand the condition. Teresa calls Dr. Iannucci a “God-sent angel.” “With an early diagnosis and proper medical management, people with Marfan syndrome can live a long lifespan,” said Dr. Iannucci, who oversees the care of Michelle and Mariah. “I would recommend that anyone who has the outward signs of Marfan talk to their doctor and get evaluated. Treatment of Marfan has come a long way in the past 25 years. Medical management can make thedi ff erence between life and death.” Michelle, who is a seventh grader and wants to be a lawyer when she grows up thinks it’s “really cool” to tell her story about Marfan and has shared information on the condition with her friends. “There are more people like me out there,” said Michelle. “I tell other kids it’s going to be ok.” MyMission Tell People about Marfan Syndrome

 Teresa, Mariah, Michelle, and Michael at the Atlanta Walk for Victory in April.

“God kept me here for a reason – to tell people about Marfan syndrome.”

To learn more about the signs of Marfan syndrome and how to get evaluated and treated, please visit The Marfan Foundation website, Marfan.org.

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Second Spanish Summit a Success The Foundation held its Second Spanish Summit on Marfan and Related Conditions in January, attracting Spanish-speakers from 22 countries. The Summit, which was held on January 21, featured presentations on clinical and genetic diagnosis, imaging, family planning, aortic surgery, and quality of life. The speakers were: • Juan Bowen, MD, Mayo Clinic, Rochester, Minnesota, USA • Arturo Evangelista, MD, Hospital Universitario Valle d’Hebron, Barcelona Spain • Carlos Esteban Martin Lopez, MD, PhD, Hospital Universitario Puerta de Hierro Majadahonda, Madrid, Spain • Laura Muiño Mosquera, MD, Ghent University Hospital, Ghent, Belgium • Juan Pablo Trujillo-Quintero, MD, PhD, Parc Taulí University Hospital, Barcelona, Spain The impact of the Summit can be summarized with this one comment, sent to us during the event by one of the participants. He told us: A huge hug from Columbia. Thanks to the first Summit, I

Un abrazo enorme desde Colombia. Gracias a la primera conferencia supe que tenía que operar mi aorta descendente, y ahora tengo una nueva. Mil gracias.

found out that I had to have an operation on my descending aorta, and now I have a new one. Thank you.

We extend a special thank you to our organizing committee:

Juan Bowen, MD Mayo Clinic, Rochester, Minnesota, USA

Arturo Evangelista, MD Hospital Universitario Valle d’Hebron, Barcelona Spain

Betsy Matarrita Community Volunteer CostaRica

Bert Medina President and CEO, WPLG-TV, Miami, Florida

Laura Muiño Mosquera, MD Ghent University Hospital, Ghent, Belgium

Plans are underway for additional Spanish programming, including the Third Annual Spanish Summit in early 2024. In the meantime, we invite members of our Spanish-speaking community to connect with us on our Spanish Facebook and Instagram (@lafundacionmarfan).

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Mental Health Resources: More Accessible Than Ever

“After many years, I came to realize that treating the physiological challenges posed by Marfan syndrome is not the same as confronting the inevitable psychological burden of the disease. Don’t go it alone. Seeking out support and/or professional help can be transformative in ways you cannot imagine.” ~Raymond Chevallier, PA

Mental health issues, including psychological, emotional, and social well-being, are common in the general population, but even more so in people with chronic health conditions. Unfortunately, mental health is frequently ignored or avoided due to stigma and, oftentimes, those who could benefit from help go without it. The Foundation is committed to helping people in our community identify mental health issues and encouraging them to prioritize their mental health in the same way they do their physical health. As part of our plan to highlight mental health concerns and encourage members of the community to take personal action when it comes to their own,

chair of our Mental Health Task Force. “This webpage is just one of the many initiatives we are implementing to

address the mental health of our community. By making it a greater focus, we hope to destigmatize some of these common issues and raise awareness while helping members of our community realize they’re not alone and empowering them to seek help.” The Foundation has always recognized the

the Foundation launched a new Mental Health section on our website, Marfan.org. The launch coincided with Mental Health Awareness Month in May. The new webpage gives our community easier access to our existing mental health content and resources. Plans are also underway to expand the mental health content and update it on an ongoing basis. The webpage is

need to address the mental health concerns and needs of the community, in addition to physical health, and continues to do so , support groups, conference p g posts, social media, and online content. This webpage enables the Foundation to highlight these e ff orts and make them more easily accessible to those who need it. To view the new webpage and access mental health resources, visit, Marfan.org/mental-health. through webinars workshops, blog p “After my daughter Cassie was diagnosed at birth with Marfan syndrome, our lives became a whirlwind. I ignored my own mental health to the detriment of not only me but also my whole family. I needed to make sure I had a place to talk about my worries and fears, as well as our triumphs, and I’ve made sure to see my therapist ever since (on and o ff for years). Making sure that everyone in my family is getting the support they need is one of the best ways I know for us to take care of ourselves.” ~Alix McLean Jennings, NJ

organized into topic-specific sections, including common challenges such as anxiety, depression, grief & loss, and bo sections include targeted stages of life, finding help and support, getting connected, and various mental health resources. ody image. Other es of life finding “Mental health is a critical part of overall wellness, and we’re thrilled to be bringing it more to the forefront,” said Dawn Reiner, a Foundation board member and

“Mental health providers have helped me sort out my fears and wants in ways even close family and friends could not. They gave me tools and ideas for managing my stress and often gave me encouragement. I know I’ve lived a longer, better, deeper life because I learned to work on my mental health as diligently as I did my physical health.” ~Chris Heaney, NC

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Camp Victory for Kids o ff ers children and teens an opportunity to have an amazing independent camp experience, learn new skills, and make new friends. ★ Georgia: July23-28 ★ California: July 30-August 4 Camp Victory for Families provides traditional camp activities for individuals ages 5 and older. Parents have the opportunity to get involved in activities with their children and participate in an Ask-the-Expert session. All family members have the opportunity to meet others who truly “get it” and make new friends. ★ Georgia: October 13-15

CAMP VICTORY Making Memories to Last a Lifetime The Foundation is thrilled to o ff er a unique summer camp experience for kids and teens with Marfan syndrome, Loeys-Dietz syndrome, VEDS, and related conditions. The camp is designed to provide a safe and supportive environment where children and teens can make friends, learn new skills, and gain confidence. Scholarships are available. Eachcampo ff ers a wide range of activities, such as swimming, canoeing, archery, arts and crafts, campfires, and much more in a safe environment using only therapeutic and adaptive

equipment. Campers stay in accessible bunks, eat meals together, and receive their medications from the on-site nurse or physician. Our amazing volunteer camp counselors are members of our community including those a ff ected, medical professionals, Foundation sta ff , and family and friends of those with a condition. “One of the most valuable aspects of Camp Victory is the opportunity for children with these conditions to meet and

“Camp is adaptive so you don’t need to worry if you can do anything. My favorite part of camp was the friends I made. They were really cool. It’s a really fun experience and a really good time. I definitely recommend you go.” ~Christian Oviedo, age 15

GET CONNECTED: UPCOMING EVENTS May 13 Global Virtual Walk for Victory May23 HeartWorks New York City June3 Michigan Walk for Victory June3 New England Walk for Victory June3 New York Walk for Victory June 10 Pacific Northwest Walk for Victory June 11 Chicago Walk for Victory June 17 Philadelphia Walk for Victory July 13–16 39 th Conference July23–28 Camp Victory for Kids, Georgia July30– Camp Victory for Kids, August 4 Northern California For a full listing of events, visit Marfan.org/calendar .

connect with others who have similar experiences,” said Camp Victory Director Andrea Friedman, MSW, the Foundation’s client services manager. “Many children with Marfan syndrome, LDS, and VEDS feel isolated and alone, especially if they are the only one in their community with the condition. Camp Victory provides a supportive community where children can make lasting friendships and feel accepted and understood.” If you have a child with Marfan, Loeys Watch a video from our Camp Victory Director

Dietz, VEDS or a related condition, consider enrolling them in Camp Victory to give them a truly unforgettable summer camp experience! Siblings are welcome, too. To read the FAQs, apply for a scholarship, learn more, and register, visit Marfan.org/ marfan-camps .

Loeys-Dietz Awareness Month is June. Learn more at LoeysDietz.org.

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The Passing of Two Former Foundation Leaders

around the world. She advocated, educated, nudged, and did whatever she could to generate public awareness, catalyze research, and activate

In December 2022, The Marfan Foundation lost two of our former volunteer leaders who were instrumental to our founding and our growth, our Chair Emeritus,

Priscilla Ciccariello, and former Board President, Cheryl Williams. Priscilla began leading The Marfan Foundation shortly after it was founded in 1981. Her oldest son had died suddenly from an aortic dissection while at college in 1969. Marfan syndrome, which had not been previously diagnosed, was identified as the underlying cause. Then, the family learned that Priscilla’s husband, Charlie, had Marfan

others, whether they were leading scientists, expert physicians, or government representatives. Cheryl Williams joined the Foundation’s Board of Directors as President in 1987. She also served a stint as Vice President and as Chair of our National Volunteer Network. From 2007-2010, she was a Board Advisor. Cheryl was instrumental in creating public awareness for Marfan syndrome and helped drive

 Cheryl Williams, far left, and Priscilla Ciccariello, far right, with former Board members Steve Marpman and Jeanette Navia at a Board retreat at our Port Washington, NY, headquarters in 2002.

as did two of her remaining six sons, Peter and John. Priscilla’s training in library science, plus her innate resourcefulness, determination, and vision enabled her to be the force behind The Marfan Foundation. Throughout her life, she remained committed to the Foundation’s three-pronged mission, knowing that education, support, and research were all crucial for a ff ected people and their families. Priscilla became known internationally as the driving force for the Marfan community, connecting researchers, volunteer organizations, and families

our emergency medicine programming in the 1990s. A constant force in the New York City support group, Cheryl was often the go-to person for people who were newly diagnosed. She was a constant presence at our annual Conference until her health prevented her from attending. Like Priscilla, she was a guiding force in the early days of the Foundation and played a critical role in our growth. The Foundation extends its deepest sympathies to the family and friends of Priscilla and Cheryl. Their legacy at The Marfan Foundation will live on forever.

Ready, Set, Run for Team Victory…at Disney! Let the magic of Disney and your passion for our

Choose Your Run:  5K – November 3: This Alice in Wonderland-themed 5K takes runners on a mad dash through the kookiest tea party around. Hosted by Alice, the Mad Hatter, and all their friends, athletes will find that nothing beats a well earned medal to celebrate an un-birthday!  10K – November 4: Answer the (dinner) Belle at the Be Our Guest-themed 10K. You’re invited on an enchanting adventure with Belle, Lumière, and other dinner Guest’s as you explore this 6.2-mile course.  Half Marathon – November 5: Grab a seat at la mesa Madrigal and channel your inner Luisa to tackle Disney’s Encanto-themed half marathon. Use your unique gifts to cross the finish line of this 13.1-mile course.

community collide for a spectacular weekend! For the first time ever, the Foundation will be a participating charity at the Disney Wine & Dine Half Marathon Weekend in Orlando, November 3-5, 2023. Sign up for Team Victory to represent our community, and run to raise funds to help further our mission. You can choose from three races, a 5K, 10K, or half marathon. each race, you’ll from three races, a 5K With

W en ch en

njoy hara nter

y an array of Disney acter sightings and rtainment, a finisher medal, refreshments, a t-shirt, and a downloadable finisher certificate.

*Anya ff ected runners must have physician approval.

Sign up today – spaces are limited. Contact Alyssa Aiello, aaiello@marfan.org, for details.

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Spring 2023

WE REMEMBER AND HONOR We are grateful to our members and friends who made contributions in memory of, or in honor of, the following individuals between December 1, 2022 – March 30, 2023. These donations support our programs and services that create a brighter future for all those living with Marfan, Loeys-Dietz, VEDS, and related conditions. Donations to Walk for Victory are not included. DONATIONS IN HONOR OF

SamHowell Kimberly Huddleston Taylor Hutchings Janice Infalt Christian Je ff ries Gail Jehan Sydney Jenkins EvanJesus Kerry Johnson Mark Johnson Maureen Jurgens CarynKau ff man Shelly Kaufman Bennett Kitchens The Kozel Family Nicole Kramer Rebecca & Sarah Kryger Dr. Ronald Lacro Haley Langford Carol Lazarus HannaLee Dr. David Liang Melissa Lister Jan Lynch, MSN, RN Talulla Maher Brenda Mann Michelle Marchiano Sofia Maria Bella Marin Peri & Morgan Masterman-Graybill Patricia McCabe The McLean-Jennings Family

Andrea Aguiar Sean Alderson Angela Garcia Amador Micah, Connor, & Audrey Amdur-Clark Kaitlyn Amos MaryBaer Raegan Bailey

Ralph & Vickie Dalton Darby Davenport Sofiamaria De La Garza Claire Dehmlow

Bert Medina Scoutie-lion Meow Cauley Charlene Meyers Brooke Meyers Bailey Milburn Dr. Craig Miller Meredith Mischner Macon Mitchell Janaan Moore Madeline Moore Hans Moossa Madeline Morris Sofia Motta Carole & Josh Nowak Christian Obregon ErikaOman

Ayden Riggs

Ava Rodriguez

MaxRomero

FrankRoss

James Dickey Haley Dostalik Gabriella Earnhart

Anthony Rossi

Kierra Rydzewski

Kabir Sandhu

Tyler Farley Maia Fleener William Henry Floyd, IV

Pete Schramm

MarenBain NoraBaker

Larry Schultz

LisaShaw

Caroline Bange Michael Banks Beckett Banks Curtis Bates Andrew Bates Hunter Beckholt

Noelle Flynn Justin Fratino Ángela Garcia

Matthew Sheehan

Dylan Shell

Avi Silver

Raquel Gilliland Wyatt Goldman Heather Gooch Julie Goodman Brad & Marybeth Green Isabella Green Jack Guglielmo

Mila Stamer

Leo Strangstalien

Christopher Stuart

Janet Bennett Rachel Berndt William Betz JackBish Megan Boeglin, BSN, RN Sebastian Brady Dr. Alan Braverman Rebecca Braverman Claire Levens, Beth, &

Geo ff reyONeal William Oxman JanePaul Cullen Petrella Daniel Petric Elizabeth Petty Precy Piape Mr. Prutow, Sr. Dawn & Brooke Pulliam James Pullins

Nicholas Sumberaz

Cameron Sweeting

Angela Taylor

Brinley Taylor

Ruby Guidry Hadley Gunn Creasie Finney Hairston Stella Hall Marjorie Hanks Aiden Hedgepeth Rocco Hermogenes Lincoln Hervatin Jace Holmes Emmy Hom/Higa Crew Kelley Horan Beckett Hotchkiss

Henry & Miles Tays

NickTeune

Kiara Mae Updike

David Veeder

Allison Brobst Susan Burgess Quade Bywater

Millington Vestal

Katharine Vestal

Dr. Reed Pyeritz

Lisa Walters

Rhonda Campbell Huxley "Little Bear" Clark LeoCole

Guidry Ramoin

Vera Wettero ff

Brandy Reichard

Courtney Whitmore

Brady Relias

RowanWild

Gail Reynolds

Isabella Williams

JayCooper CeceCorso

James Richardson

Ashley Zarate

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Marfan.org

DONATIONS IN MEMORY OF

J. Doehring Karen Dragon Kelsey Dresser Clifton Durand Steven Durrett

Renee Jessup SueJones Michael Jordan Jerrod Jung Robert Keating Sally Kelly John Walter Kidd Martha King Brendan Kledzik Julia Koehler EmilyKor ff Patrick Kremer Julie Kurnitz Jacobi La ff erty Kamden Langford David Laufer Alexa Lawrence Helen Shelby Lee Jack Lemmer June Leroue MayLi Donald Manderfeld Allyson Marisch Al Matsuura Erica Mayton Thomas McNeill JoAnn Metternich Connor Metz Clara Meyers Sue Ann Miller Rochelle Moira Bass Ralph Monaco DawnMark DawnMarks John Marshall

Patricia Moran Andrew Morrell Gloria Morrell John H. Morrell, III Sandy Morris Hudson Morris Melissa Jean Mosca

Tony Aguiar Alice Rae Anaya Katherine Anderson Nix Cole Andress

Jeremy Semano ff Arif Shabab Aydan & Isla Shannon AvaShaw Logan Siciliano Mark Silver Tristan Sims Libby Sparks Lowell Stephens Carolyn Ann Sweeting Michelle & Bodhi Swindle Abel Tahirkheli Betty Talkington Dorothy Taylor Greyson Templeton Luke Terrell Charlene Terrell Newman Diane Thomas John & Larry Torode Michael (Mikey) Tozzi Dr. James Tweddell Kokila Vakharia Richard Douglas Van Allen GaryVida Je ff Walker Laura Holt Wascha Carolyn Weinhold Martha Wells MindyWest Jessica Westmoreland Linda Cheryl Williams Denise Winter Mathew Wolfgram Martin Wolpers Christopher Yasick

Kaitlyn Anthony

Jay Elliott AnnaEllis Michael Enbar Danielle Escarcega Mary Essers Kenneth Fabrizius Margaret Foley

Ryan Bailey

EnidBaron

Claire Murphy Debbie Murray Ilana Mysior

David Barry

Michael Bartlett

Michael Beardslee

Lauren Naddy Angelo Natali Joseph Neustadt JonNiemi Tina Pontillo O'Brien Paulette O'Brien Ryan O'Sullivan SimaPatel Christopher Paulsen Vince Payne Ryan Pierce Samantha Pomponio Vicky Prager Jackie Prindle Catalina Quijas Joyce Raleigh Sarai Reece Lucinda Reeves Ann Reinking Thomas Reis Regan Remulla Barbara Reynolds Tad Reynolds Linda Rohrbaugh Brooke Roth Aaron Rowan Richard Schmuhl Spencer Sellas

Je ff Berkowitz

William Betz Jr. Diane Biesecker Reneker Trent Blanton

Kit Fong Lai Mark Fosdal

Justin Fratino Grace Friend Melodie Friesen BryanFunk

Warren Bonner

Frederick Bowyer

Michael Brandt

Matthew Garcia Sondra Gardner Julie Goodman Susan Grossi Gabi Guaipatin John Patrick Hannan Melissa Harp Paul Hartmann FredHearn Richard D. Heim Glenda Ann Henry Willa Hilton Walker Luke Hosking Scott Hunefeld Dwight Hurst Eileen Ilberman Matthew Ingra ffi a AnnJarosz Shawn Heldt Chris Hemby

David Braverman

Marissa Broady

Xavier Broussard

LeahBurke

Gabrielle Cannistraci

James Capaldo

Je ff Carlson

Andie Carpenter

James Carreon

SarahCayo

Priscilla Ciccariello

Elinor Cohen Guy "Scooter" Comeaux Kevin Cookson

Callie Cornely

Blaise Dafoe

Michael Daly

DawnMonks John Monroe John C. Moore

Douglas Davis

RitaDean

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Spring 2023

22 MANHASSET AVENUE PORT WASHINGTON, NY 11050

MAKE CONNECTIONS , seek support, and access resources this month.

May is Mental Health Awareness Month

Check out our newmental health webpage.

Learn more on page 11