Connect Issues Winter 2022

Winter 2022

OUR WALK PARTNERS

CONSIDERING THERAPY?

VITAL MEDICAL INFO: RECALLS

YEARS

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.

SINCE 1981

While it’s true that we’ve been physically distant for the past year and a half, we have certainly not been distant socially. We expanded our virtual programming in new and creative ways, and even more people participated with the Foundation and its divisions, The VEDS Movement, Loeys- Dietz Syndrome Foundation, and GenTAC Alliance. There is strength in numbers and, when we combine our e ff orts, it is clear to see that we are strongest together.

There is no stopping the Marfan, Loeys-Dietz, VEDS, and related conditions community. As you will read in this issue of Connective Issues , our community members are not just surviving. They are thriving. Our Walks for Victory – whether online, as they were in the past year, or in-person, as we’ve started to experience again in Fall 2021 in Cleveland and St. Louis – are a perfect example of our strength. These events bring together the community of people with Marfan, LDS, VEDS, and Stickler syndrome, as well as our medical champions, in a day of celebration. The doctors who serve as medical chairs and their institutions, which provide valuable sponsorship support, are truly part of our family, and we could not be more grateful for their partnership. Their involvement makes us strongest together. Our other programming also brings people together in ways they never imagined. They come for information and access to the best doctors. They get that and so much more. We are inspired by the life-long friendships that stem from our annual conference and the relationships that are fueled by our virtual support groups. We learn together, we laugh together, and we cry together. In the end, everyone feels better informed, more empowered, and well supported. No doubt, we are strongest together. In the year in which we were forced to connect virtually rather than in person, there was an interesting twist in that we successfully broke down geographic barriers for education and connection. Experts from other countries were able to present as part of our programming and people with Marfan, LDS, and VEDS from all over the world were able to participate – without buying a plane ticket or making hotel reservations. In the coming year, we will feature more international programming than ever before – both online and in person. We are clearly now strongest together globally. Now, as we start a new year, we have much to look forward to. While we don’t know exactly what the new year will bring, we do know that we will do it together – because we are strongest together. Wishing you happiness and good health in 2022.

Learn more and get involved at Marfan.org.

CONNECTIVE ISSUES Winter 2022 VOLUME 41 | NUMBER 1 Connective Issues is the newsletter of The Marfan Foundation. It is published three times per year.

Inquiries should be addressed to: Publicity@Marfan.org

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

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: Laurel Giacone and Anthony Striker first met as young teens at one of our annual conferences. At the time, both Laurel and Anthony's sister, Amy, had a Marfan diagnosis. This spring, Laurel and Anthony will be married. Read about their unique conference connection on page 11. Photo credit: Robin Pagano Photography

CLEVELAND AND ST. LOUIS SET THE TONE

The Foundation kicked o ff the 2021-2022 Walk for Victory season with record-setting events in Cleveland in September and in St. Louis in October. Our presenting sponsor in Cleveland, the Cleveland Clinic, had its sights set on taking the Walk to the next level. With the event now on the campus of the famed institution, the Walk attracted 265 people with Marfan, Loeys-Dietz, and VEDS – and their families and friends – and raised $51,000. “The Marfan Walk for Victory is a great community awareness event for Marfan and other vascular connective tissue conditions,” said Dr. Vidyasagar Kalahasti, adult cardiologist at Cleveland Clinic, which specifically requested that the Walk be scheduled on September 19, Aortic Disease Awareness Day. Dr. Kenneth Zahka, a pediatric cardiologist at Clevelend Clinic, agreed. He added, “The Walk also gives me a chance to get together with my colleagues in genetics, adult cardiology, and cardiac surgery. It reminds us of the continuity of care and the importance of teams to bring the best care to patients of all ages with connective tissue conditions.” Maya Brown-Zimmerman, who started the March for Marfan, the precursor to the Cleveland Walk, in 2006 when she was a member of the Alpha Phi Omega service fraternity at Case Western, talked about the benefits of the Walk to the community, especially as the event has grown. “It's amazing to see how this Walk has expanded over the years,” said Maya, who attended this year with her

p Dr. Alan Braverman (far right) looks on as his team cuts the ribbon.

son, Julian, who has Marfan, her husband, and her three other children. “It provides an important opportunity for our community to come together and celebrate while raising funds and awareness. We are lucky to have a hospital that is so involved in the e ff orts as well!” Our St. Louis community, not to be outdone, broke its own record on October 3, raising $65,200 (and counting) through the Walk for Victory. Team Braverman, led by Dr. Alan Braverman, a member of the Foundation’s Professional Advisory Board and Board of Directors, totaled $31,699 in donations while Team Bobbe raised $22,378, with more to come this year. “We have a very special community in St. Louis and across the bi-state area and all the way to Kansas City!” said Dr. Braverman, who is director of the Marfan Syndrome and Aortopathy Clinic at Washington University School of Medicine and Barnes-Jewish Hospital, and also serves as the Medical Chair for the St. Louis Walk. “It is a privilege for my nurses, Barb Stehman and Dana Gima, and me to care for this special group of people and to help raise funds for the Foundation.” Our St. Louis Community Chair, Nikki Bobbe, mom of six-year-old Elliott, who has Marfan, summed it up best. “If one life is saved by our e ff orts or if the future for people with Marfan and related conditions can be a tiny bit better than before, then that’s our goal.”

p Dr. Vidyasagar Kalahasti cut the ribbon for the Cleveland Clinic team.

CLEVELAND WALK FOR VICTORY

ST. LOUIS WALK FOR VICTORY

Medical Chair: Dr. Eric Roselli, Cleveland Clinic Community Chairs: Benita Gallagher, Shannon Mace, and Lindsey Swancer

Medical Chair: Dr. Alan Braverman, Washington University School of Medicine Community Chairs: Bobbe Family and Kristin Stillman Honorary Chairs: Jay Elliott, Dawn Pulliam, and Laura Torode Valley Sponsor: Turner Construction Company Foundation

Honorary Chairs: Maya Brown Zimmerman and Beth Utz Sponsors: Cleveland Clinic, Terumo Aortic, Alpha Phi Omega

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WALK FOR VICTORY: SALUTE TO OUR HOSPITAL PARTNERS Each Walk for Victory is a special day of education, awareness, unity, and connection. The Marfan Foundation is grateful to the medical chairs and sponsors of the many Walks we organize across the country. We applaud these doctors who champion our cause and are committed to the best care for those with Marfan, Loeys- Dietz, VEDS, and other genetic aortic and vascular conditions. We also recognize and thank the many sponsors that dedicate time, sta ff , and funds to help the Foundation bring people living with Marfan and their families together. All Walk photos here (except Duke Heart, with masks) were taken at pre-pandemic events.

Dr. Hughes, second from left, with the Duke Heart and Marfan team at the North Carolina Walk for Victory Coming together as a community gives us an opportunity to socialize with our many patients with connective tissue conditions outside of a clinical setting and to get to know them and their families on a more personal level. We want them to know that we are here for them. We enjoy talking with patients and families, spending time with them, answering their questions, and offering support.

Dr. Yusupov, far left, with the team from Joe DiMaggio Children’s Hospital at a South Florida Walk for Victory The best thing about the Walk for Victory is that it connects patients and their families in a big community that helps them feel empowered, which adds an extra level to their care. Joe DiMaggio Children's Hospital started its Marfan clinic 10 years ago, and the Walk for Victory allows us to see the results of our efforts because, with every year, the number of participants grows.

– ROMAN YUSUPOV, MD, JOE DIMAGGIO CHILDREN’S HOSPITAL (SOUTH FLORIDA)

– G. CHAD HUGHES, MD, DUKE HEART (NORTH CAROLINA)

I always look forward to meeting patients and their families with Marfan syndrome and other connective tissue disorders to make them aware of the comprehensive services that we can provide them with at Emory. – BRADLEY G. LESHNOWER,MD, EMORY HEART & VASCULAR CENTER (ATLANTA)

What I like best about the Walk is it gives me an opportunity to see everyone outside the hospital, with their family and loved ones, in a relaxed environment. The Walk provides all of the caregivers (docs, NPs, PAs, nurses, office staff) a chance to see how well people have recovered and are enjoying their lives after recovering from major operations and demonstrates the positive impact a dedicated medical team can have on patients and their families. – LEONARD GIRARDI, MD, NEW YORK PRESBYTERIAN HOSPITAL, WEILL CORNELL MEDICINE (NEW YORK) Dr. Girardi addresses the community at the New York City Walk for Victory

For years, the team at Northwestern Medicine's Bluhm Cardiovascular Institute has teamed up with The Marfan Foundation to help science develop into innovative clinical breakthroughs for our patients. I am proud to be part of a great community that has come together to raise awareness for Marfan syndrome and related diagnoses. – S. CHRIS MALAISRIE, MD, NORTHWESTERN UNIVERSITY (CHICAGO)

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As a clinician closely involved in the care of Marfan pa- tients, I have witnessed the Foundation’s dedication and commitment to creating a community and saving the lives of these patients. The Walk for Victory brings patients and professionals together as one big family with one goal, to save and improve the lives of patients with Marfan and related conditions. By participating in the Walk for Victory, we want to show that we care, and it matters to us to be part of this community. – IRMAN FORGHANI, MD, UNIVERSITY OF MIAMI (SOUTH FLORIDA) Dr. Forghani, left, with Dr. Juanita Hunter, UM pediatric cardiologist, at a South Florida Walk for Victory

It is inspiring to see the patients, families, physicians, nurses, surgeons, and geneticists unite for such a tremendous Foundation and great cause. The Walk allows my team at Lurie Children's Hospital to form relationships with our patients and their families outside the hospital's walls. It's an excellent opportunity to share the Foundation's mission, disseminate information, address questions, and hear about what matters most to our patients. It is also a way to show the community the excellence of care we provide at Lurie Children's Hospital. – KELLY COX, MD, ANN & ROBERT H. LURIE CHILDREN'S HOSPITAL (CHICAGO)

Dr. Xydas (far right/blue shirt) walks with the community at the South Florida Walk for Victory What I like best about the Marfan Walk for Victory is the ability to meet with patients, families, and fellow medi- cal professionals with the common goal of elevating the quality and coordination of the care of the Marfan commu- nity. It is very uplifting to hear from patients and families about their direct experiences and needs and how we can improve to meet them. – STEVE XYDAS, MD, MOUNT SINAI MEDICAL CENTER (SOUTH FLORIDA) The greatest value is an opportunity for patients and their families who are walking down a road in life that a lot of people they know aren't...a road they aren't necessarily prepared for, and that can sometimes be scary and lonely... to connect with, to walk with—both literally and figuratively— down the road together. We want to foster that community that allows people to join in meaningful ways. – TOM COLLINS, MD, STANFORD CHILDREN’S HOSPITAL (NORTHERN CALIFORNIA)

Dr. Ca ff arelli, left, with Dr. David Liang, right, and members of the community at the Southern California Walk for Victory The Marfan Foundation Walk is an incredible day! From the clinician side, my staff and I love seeing the patients and their families outside of the hospital having fun. Those interactions keep my clinical team going through the long hours at the hospital. – ANTHONY CAFFARELLI, MD, HOAG HOSPITAL (SOUTHERN CALIFORNIA)

The reason I am such an ardent Marfan Foundation supporter and why I encourage my colleagues and hospital to be a part of the Walk for Victory is that it provides the rare opportunity for doctors, patients, and families to gather outside of the hospital setting, make personal connections, and enjoy each other's company. It serves as a reminder of why we are a part of the Foundation in the first place - to facilitate the health and well-being of our patients so that they can enjoy a life lived to its fullest potential with family and friends. – CLAYTON KAISER, MD, ASCENSION SAINT THOMAS HEART (NASHVILLE) Dr. Kaiser enjoying the Nashville Walk for Victory with his family

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2021-2022* WALK FOR VICTORY PRESENTING SPONSORS

The Foundation is so grateful to the hospitals and other companies that sponsor our Walks for Victory all over the country. They are true partners to the Foundation and to our community. They believe in our mission and are dedicated to the care of people with Marfan and related conditions. We couldn’t do it without them! Upcoming Walk for Victory Schedule u South Florida (Hollywood): February 6 u Southern California (Costa Mesa): February 26 p Nicole Perez (right), television anchor at WPLG Local 10, media sponsor of our South Florida Walk for Victory, kicks off the 2019 Walk.

u Phoenix: March 6 u Houston: March 26 u Atlanta: March 26 u Nashville: April 9

u North Carolina: April 23 u Washington, DC: May 7 u Northern California (Aptos): May 7 u Global (Virtual): May 14 u Chicago: May 21 u Pacific Northwest (Seattle): May 21 u New York City: June 4 u Boston: June 4 u Philadelphia: June 18

ADDITIONAL SPONSORS

Turner Construction Company Foundation

Laguarta Family

*As of December 31, 2021

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WITH A MULTI- DISCIPLINARY CLINIC Q A &

The optimal care for someone with a complex, multi- system condition like Marfan, Loeys-Dietz, or VEDS is a coordinated clinic that has expertise and extensive experience treating people with these conditions. We visited with Dr. Glen Iannucci, Director, Aorta and Vascular Program, and Assistant Professor of Pediatrics at Children’s Heart Center at Children’s Healthcare of Atlanta (CHOA), to get more insights into one of the institutions in our directory, how they serve a ff ected individuals and families, and how they work with the Foundation. CHOA, which has had a Marfan and related conditions clinic since 2012, has had more than 5,000 patient visits since then. u Why is it important for people with Marfan, LDS, and VEDS to go to a multi-disciplinary clinic? People with these conditions need care from a variety of providers, and having one central location for medical management is vital. Our clinic has pediatric cardiologists, genetic counselors, and nurse practitioners who specialize in these conditions; we also are well connected within the medical community of providers (orthopedics, ophthalmology, nutritionists) who are familiar with these conditions and can help provide comprehensive care. u Why is it so important for people to see doctors who are experienced with these conditions? Doctors with experience in these conditions not only know how to care for what patients have, but also know what to be on the lookout for as patients grow and develop. They are well versed in the most up-to-date research regarding these disorders and can provide comprehensive, thoughtful care. u If someone does not live near a clinic like yours, would it be helpful to go once a year and then get other care locally? Do you ever do virtual clinic visits? It is important to go to a comprehensive clinic annually to get all questions and concerns addressed as well as potential referrals for other subspecialists arranged. We also want to ensure that patients are receiving up-to-date medical management and that screening is arranged for all possible complications before they become an issue. Care can be arranged locally after these areas have been addressed. We do o ff er telemedicine visits with physicians and genetic counselors outside of annual cardiology screening. u How does CHOA partner with The Marfan Foundation and why is that important to you? We partner with the Foundation to provide support to our patients and families a ff ected by these

p (L-R) Glen Iannucci, MD, Erin Demo, MS CGC, Leslie Bishop, NP, and Denver Sallee III, MD

conditions. The Marfan Foundation is a crucial element in the comprehensive care of patients because of the support it provides. At CHOA, we participate in annual fundraising events, sponsor the Foundation’s Walk for Victory in Atlanta, and hosted the Foundation's Annual Conference. We have also hosted regional symposiums on Marfan and related conditions here and are planning another one for Fall 2022. We do all of this because we want patients and families to know that they are part of a larger community. The Marfan Foundation has really served to unite the patients and medical community and fostered a relationship where we are all working together to advance care. Nowhere is this more apparent than at the annual conference. u Can you tell us about one of your most memorable Marfan clinic visits? One of our most significant days was when we had an established patient, who didn’t know she was pregnant, deliver a baby (thankfully not in our clinic!) and then later came to the clinic for her and the baby’s care. The baby was a ff ected, and the mother’s aorta had grown during pregnancy. It was a humbling experience for all involved. Connect with Dr. Iannucci and his colleagues at the Atlanta Walk for Victory on March 26, 2022. Find a clinic near you on our website.

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What do I do if there's a recall on my ARB/beta blocker, or a shortage? Vital Medical Information

It is the opinion of the Foundation’s Professional Advisory Board that the risk posed by the impurities is much smaller than the risk of stopping the medication for people in our community. Recalls can also lead to temporary shortages of medications essential to those with Marfan, Loeys-Dietz, VEDS, and other genetic aortopathies. The Professional Advisory Board urges people to discuss options with their healthcare providers to safely transition to alternative suppliers of your current medication or to an alternative medication, if necessary. If a transition from irbesartan to losartan is necessary because of shortages or recalls, it is important to speak with your doctor regarding dose adjustment because the medications have di ff erent potencies. In general, you should expect to receive a higher dose of irbesartan. A change between medications in the same class (such as the angiotensin receptor blockers losartan and irbesartan) is generally done without weaning or a titrated transition. If you have further questions, please contact our Help & Resource Center (Marfan.org/ask) or ask your healthcare provider.

Over the past several years, there have been numerous recalls or shortages in the medications commonly used by people with Marfan, Loeys-Dietz, and other related conditions. Many of the impurities are probable human carcinogens (a substance that could cause cancer), which would only present a concern with high exposure over an extended period of time. Additionally, many of these impurities are found during the manufacturing process and not the final product. In most instances, the FDA does not mandate a recall; rather, the company decides on a recall to err on the side of caution. The FDA then posts a company's recall announcement as a public service. When a drug retailer is notified of any batches that warrant concern, your pharmacist is a valuable resource for information about your current batch of medication. The pharmacist can also provide access to a medication from an alternative supplier. These types of issues arise intermittently for many types of medications including various angiotensin re- ceptor blockers, such as irbesartan or losartan, and beta blockers, such as metoprolol or atenolol. The situation is always carefully monitored, and the response by regula- tors and retailers is typically prompt and decisive. UPDATE Camp VICTORY Camp Victory for Kids and Camp Victory for Families are vital programs for our community. These sleepaway camps, which are specifically for kids and families with Marfan, LDS, VEDS, and related conditions, provide the same fun and friendships as all summer camps. The only di ff erence is that Camp Victory o ff ers an adaptive environment that is safe for them, given physical limitations due to their diagnosis. We were so looking forward to re-starting Camp Victory for Families in Ohio and Georgia in April. However, due to the recent COVID-19 resurgence, we decided to postpone these camps. The health and safety of our families is always our first priority. We continue to plan for Camp Victory for Families in Northern California, June 24-26, 2022. Then we have three Camp Victories for Kids planned for this summer. u Georgia: July 23-29, 2022* u Northern California: August 1-6, 2022 u Ohio: August 7-12, 2022

p Campers at our Atlanta area camp (pre-pandemic) enjoyed the regular camp activities.

Please know that, for all camps, we will follow strict COVID protocols. Camps are subject to change pending pandemic status and local, state, and federal regulations. Please watch for updates and registration announcements on the Foundation website. If you have any questions about Camp Victory, please contact Andrea Friedman, MSW, Client Services Manager, at afriedman@marfan.org.

*to be confirmed

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Foundation Grants Critical to Research, Potential Cure

“Innovative and ground-breaking research in any field cannot be done without pilot funding to support early-stage exploratory studies capable of producing long-term advances that improve clinical care,” said Dr. Jonathan Weinsaft, a cardiologist, cardiovascular imager, and professor at Weill Cornell Medicine. “Large- scale federal research is important and ultimately necessary for this process, but it can't support the process in isolation. Funding from organizations such as The Marfan Foundation enables early-stage research to occur.” Pilot Funding Allows for Large Scale Research Based on Dr. Weinsaft’s experience, grants awarded for rare diseases can be inadequate since most funding is provided for larger-scale issues like stroke, arrhythmias, and atherosclerosis, which a ff ect millions of people. “The fact that Marfan is a relatively rare condition doesn't matter to that 18-year-old, 30-year-old, or 50-year-old who is a ff ected in a life-threatening man- ner,” Dr. Weinsaft stated. “Funding to support rare disease research for what is a significant and potentially clinically serious complication like dissection is critical in order to work towards a cure." According to Dr. Weinsaft, funding from organizations like The Marfan Foundation supports academic and intellectual curiosity that allows researchers to ask questions that they may not be able to in a large-scale manner that would be appropriate for federal funding or otherwise. Foundation-Funded Aortic Research Leads to Significant Findings Much of Dr. Weinsaft’s laboratory research focuses on using new imaging techniques to understand pathophysiology better, inform treatment, and ultimately improve outcomes for cardiovascular and aortic disease patients. In 2018, he was awarded a grant by The Marfan Foundation to study people with Marfan syndrome or other causes of aortic enlargement undergoing surgical graft replacement of the ascending thoracic aorta. The goal was to discover whether MRI (magnetic resonance imaging) predicted changes in the aorta before and after surgery, and if native aortic tissue properties and graft design synergistically contribute to changes in the downstream native aorta after proximal graft surgery. Through this study, Dr. Weinsaft and his multidisciplinary team collaboration with Drs. Leonard Girardi, Mary Roman, Richard Devereux, and Mario Gaudino at Weill Cornell, as well as international collaborators including Dr. Alberto Redaelli at Polytechnico (Milan, Italy), used new cardiac MRI and computational modeling methods to better understand the impact of proximal aortic graft surgery on the

p Dr. Jonathan Weinsaft (seated, with lab coat) with members of his research team.

downstream (native) aorta. “In the case of our lab, the Foundation funding was critical for us to build a research infrastructure to bring in patients with Marfan syndrome who were undergoing aortic graft surgery, so that we could do state-of-the- art emerging imaging methods using cardiac MRI,” said Dr. Weinsaft. “In addition, the funding allowed us to build a team of international leaders.” The grant allowed the researchers to generate important preliminary data on the e ff ects of aortic grafts on downstream native aortic physiology. The team has presented the results at leading cardiac surgery, cardiology, and imaging conferences and published three papers (another in preparation) related to the data. They continue to expand their scope of work on the initial study. “We wouldn't have been able to make this impact without the Foundation’s support of our work,” said Dr. Weinsaft. “It allowed us to take on the pilot study, generate the preliminary data and build upon it, and, ultimately, put together an international consortium that could then build the groundwork for larger scale research towards the goal of improved long-term clinical outcomes for people with Marfan syndrome undergoing proximal aortic graft replacement surgery.” To support research and education on Marfan and related conditions, please go to Marfan.org/impact.

Want to get involved in research? Several studies are seeking participants. Visit Marfan.org/research for details.

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IT DOESN’T GET BETTER, BUT YOU GET BETTER AT LIVING WITH IT

Although he didn’t know it at the time, the death of Otto Nitschmann’s father in 1991 from a brain aneurysm would have a lasting impact on his life and consume his adulthood. Otto was only four when his father passed away, and his family never knew why. Otto was born in El Paso, TX, and lived there for two years until his parents moved back to Chihuahua City, Mexico. When he was 14, his mother headed back to Texas so he could receive an American education. Otto went to high school and college in El Paso, and in 2011, moved to Chicago for an engineering job. While driving on a work trip in California in 2016, he began feeling ill and stopped at a gas station. “I could feel something rupture inside of me,” Otto stated. “It was the worst pain I had ever felt in my life - like claws were digging in my stomach.” Over the span of three weeks, doctors found a rup- tured aneurysm on his splenic artery as well as others in his intestines, so his spleen and part of his intestines were removed. He left the hospital, not knowing the cause. “Even though we didn’t know what was causing all this, as soon as we heard aneurysm, we knew it had to be related to dad,” Otto said. When he got back to Chicago, Otto saw many doc- tors in search of answers. Finally, he had a genetic test which confirmed the diagnosis of Vascular Ehlers-Dan- los syndrome (VEDS). “My fiancé and I knew it was a serious condition and the limitations it would have on my life,” said Otto. “The hardest part was learning about life expectancy. I told her she deserved a full husband, a full life.” But Catalina was committed to Otto and they were married in 2018. Otto, who is the same age as his father when he passed, contemplates what the future may hold. “You think about death all the time,” he explained. “Should I save for retirement? Will I ever see retire- ment? It’s tough, but a therapist helps.”

p Otto and Catalina enjoy spending time traveling together.

In addition to a therapist, Otto said he finds comfort and answers in the monthly virtual support groups of- fered by The VEDS Movement. He also has great hope because of the upcoming clinical trials for a potential treatment for VEDS. “Whenever a new member comes in and has a recent diagnosis, you can tell they are going through the same stages,” stated Otto. “You help them, but many times, they also help you. It’s good talking to someone who understands you.” Otto encourages others to find support and mental health help to quell the negative thoughts and look toward the future. “It doesn’t get better, but you get better at living with it,” he said. “Don’t give up on your quality of life. You need to stay healthy for others, but you also want to live life for yourself because you don’t know how long you have. Finding a balance is key.” Spanish Language Summit January 22, 2022 ONLINE The Marfan Foundation will hold its first-ever Spanish language summit on January 22, 2022. Speakers from all over the world will provide information on Marfan, Loeys- Dietz, and VEDS for people a ff ected with these conditions and their families. A panel of people with these conditions, including Otto, will share their experiences and how they live successfully with their condition. Registration is free, but required. Visit Marfan.org/cumbre-de-la-fundacion- marfan to learn more and register.

The VEDS Movement is looking forward to the upcoming clinical trials for VEDS planned by Acer Therapeutics (celipr- olol) and Aytu BioPharma (enzastaurin). We will provide up- dates on both trials as more information is announced. You can sign up for updates from The VEDS Movement on our website, TheVEDSMovement.org . You can also get updates directly from Aytu BioPharma at PreventVedstrial.com and from Acer Therapeutics at DiscoverCeliprolol.com.

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A CONFERENCE CONNECTION

Once upon a time, 10-year-old Laurel Giacone, of New Orleans, was diagnosed with Marfan syndrome. In St. Louis, another young girl, Amy McCawley (née Striker), was receiving a similar diagnosis. Little did they know that, when both families decided to attend a Marfan Foundation conference, it would be the beginning of a love story for the ages. At the 2008 annual conference in Boston, Laurel met Amy and her brother, Anthony, for the first time. “For sure, I thought he was very cute,” said Laurel. “But a lot of other girls had crushes on him too. I was closer to Amy at the time, so he was the brother of a friend. And Anthony was closer to my brother, Brad, because they both had a sibling with Marfan.” Laurel and Anthony continued to communicate “awkwardly,” she says, via Facebook over the next few years. They’d see each other at Foundation events and would catch up. Then the story takes an intermission. Anthony graduated from Maryville University in St. Louis and, as luck would have it, Laurel had decided to go to college in St. Louis too. She graduated from St. Louis University and remained in the area to work. “I definitely felt out of place at times during my life, not knowing my identity when I was first diagnosed with Marfan,” said Laurel. “I had to change my lifestyle, had surgeries, and really felt untethered. Going to the annual conference and meeting people who looked similar to me and understood was so magical. I had a lot more confidence at the conference than in real life.”

Following college, both Laurel and

Anthony ended up living in the same area of St.

Louis and ran into each other at what Laurel calls the “diviest of dive bars.” They struck up a conversation, and their relationship took on a new meaning. Since Anthony was already in the know about Marfan, he easily understood Laurel’s limitations and her needs. “When you start dating someone, it’s always huge to tell someone you have Marfan,” said Laurel. “You don’t want it to be the first thing you tell them, but you don’t want to seem like you are withholding information. I got really lucky because Anthony already knew.” Anthony was also Laurel’s rock two years ago when new genetic testing came back and revealed that she has Loeys-Dietz, not Marfan. She was happy to have the definitive diagnosis, but it was also terrifying. There are more things to consider, more to monitor. Anthony’s sister also found out through new genetic testing that she doesn’t have Marfan or any other connective tissue condition. Yet it seems that the original diagnoses for both girls was for a reason – for Laurel and Anthony to meet. “For a long time I had Marfan and went to the Foundation’s annual conference. Then, with the LDS diagnosis, I attended a Loeys-Dietz Syndrome Foundation conference,” said Laurel. “The following year, the LDSF became part of The Marfan Foundation. I felt that I was reflected in that convergence. These are two big pieces of me, and now it’s one bigger community.” The love connection took another turn on October 2, 2020, when Anthony proposed. Laurel wrote on her Instagram account, “2020’s finally looking up!” The wedding is set for March 2022 in Laurel’s hometown of New Orleans. SAVE THE DATE 2022 ANNUAL CONFERENCE July 8-10, 2022 Hosted by Hoag Hospital | Newport Beach, CA Registration is coming soon. Watch our website for details.

Photos by Robin Pagano Photography

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CONSIDERING THERAPY? By Ennis Bashe Struggling with how you feel about your diagnosis of Marfan syndrome, VEDS, or Loeys-Dietz syndrome or the many ways it impacts your life? Are you considering making an appointment with a mental health profession- al, but the concept worries you? Maybe you’ve seen ther- apy portrayed negatively on TV. We've highlighted some common myths and truths to help you decide if meeting with a mental health professional is right for you. MYTH: A therapist won’t be able to help me because I’ll still have the same issues in my life. ★ TRUTH: A therapist can’t change your reality, but they can help you to better cope with the challenges you’re facing. The right therapist will understand that your issues are real and help you sort through your thoughts and feelings about them. You’ll be heard and understood no matter what you’re dealing with. A therapist will also help you discover ways to take care of yourself while coping with your struggles. MYTH: I don’t need therapy because I have people in my life I can talk to. ★ TRUTH: You might wonder, “Why should I pay some- one to listen to me? I have friends and family around me, as well as people in the Marfan community. Even if they’re dealing with their own problems, I still feel supported.” Connecting with loved ones is important to your mental health, and reaching out to friends and com- munity members is an important facet of life. However, mental health professionals do more than just listen and provide support. They bring a di ff erent perspective and help you look at things in new ways, and they can sug- gest ways for you to cope. Scheduling a therapy session provides you with time to focus solely on yourself, with a non-judgmental, non-biased person trained to help. MYTH: I don't need to see a therapist. I'm not crazy, and there's nothing really wrong with me. ★ TRUTH: There's no such thing as "crazy" and you don't need to have a mental illness diagnosis to see a therapist. If you're one of the millions of people who experience emotional or mental distress that impacts your overall well-being and quality of life, then a therapist can help you. There may be times when it's harder for you to cope with life's stressors, how you think or feel about yourself, and how you interact with others and the world around you. That doesn't mean there's anything wrong with you. It simply means you're human. Sometimes seeking therapy is viewed as a sign

of weakness. However, it takes strength and courage to admit you’re struggling and reach out. You check in with your doctors if you’re having trouble with symptom management, so why not care for your mind the way you care for your body? You deserve to feel better! MYTH: A therapist will just force me to go to the hospital if I voice what I’m really feeling. ★ TRUTH: Living with a chronic medical condition has its challenges. You might feel anxious, depressed, or even hopeless. Maybe you’ve even contemplated suicide. It’s normal to deal with these struggles, and you don’t need to su ff er alone. Ignoring these feelings or attempting to bury them will never make them go away. Being open and honest about your thoughts and feelings with a therapist will only help you. Yes, there are times when the hospital is considered if a person is truly in danger of harming themselves or others, but a therapist's goal is to keep people out of the hospital. You'd be surprised at just how much better you feel by voicing your true thoughts and feelings. MYTH: A therapist won’t understand me. They've never walked in my shoes. ★ TRUTH: It’s normal to be concerned that your thera- pist won’t understand you. However, it’s possible to find a therapist who’s from your culture or background so that you can focus on getting treatment, instead of hav- ing to explain discrimination that you face. You can feel seen and heard – the right therapist for you is out there. MYTH: A therapist will force me to talk about all the darkest, most secret things in my life right away. ★ TRUTH: An important part of therapy is building trust naturally. A good therapist will follow your pace. You don’t need to reveal anything that makes you uncomfortable, and you can wait until you’re ready to bring up painful topics. A therapist will also give you tools to help you feel calm and stay in the moment, making it easier to discuss those subjects. You don’t have to discuss anything before you feel ready. MYTH: It’s normal to feel unhappy. ★ TRUTH: No one’s life is perfect, you might tell yourself. Maybe your inner monologue says that other people have it worse, so you should stop complaining and work harder to keep smiling. The truth is that you are worthy of feeling better. You deserve to get help. Feeling sad is a normal emotion, but if you've been experiencing more sadness than joy in your life, you might want to consider seeking professional help. A therapist can help you to move forward in a more satisfying way.

Ennis Rook Bashe is a graduate student in their final year at New York University’s Silver School of Social Work who is currently interning with The Marfan Foundation. They live with hypermobile Ehlers-Danlos syndrome and a very loud cat.

If you or someone you know is in crisis, call the National Suicide Prevention Lifeline at (800) 273-TALK (8255) or text the Crisis Text Line at HELLO (741741) . Both services are confidential, free, and available 24/7.

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FINDING THE RIGHT THERAPIST FOR YOU

By Ennis Bashe So, you've decided to focus on your mental health, but don't know how to begin searching for a therapist? While it can take a lot of research and time, finding the right therapist is worth the e ff ort. Here are some tips that can make finding the right mental health professional easier. For starters, it helps to learn about the types of therapy available to choose from. Maybe you prefer the more traditional talk therapy. Or, maybe you love to create and would benefit from art therapy, or you’d like to see a hypnotherapist who can help you relax. Researching options and asking yourself which one seems best is important, as is understanding that certain types of therapy are more appropriate for specific issues. Many therapists are trained in more than one type of therapy and may use a combination of techniques. Next, consider the areas of expertise identified by the therapist. Ask prospective therapists what training they’ve had working with disability, chronic illness, and related issues. A therapist who admits they don’t know something might be a better fit than someone who gets defensive. In addition to being honest about how much they know, a good therapist should be willing to learn new things. Finding a therapist with specific expertise in Marfan syndrome, VEDS, Loeys-Dietz syndrome or other connective tissue conditions may not be as important as working with a therapist who is willing to learn about you and your diagnosis. Another tip is to use websites and services that can match you with therapists whose background you may be able to relate to better. Having Marfan, Loeys-Dietz, or VEDS is only part of your story. You may want to find a therapist who has experience beyond those with disability – for example, with other characteristics that are also part of your identity, such as race, gender, and sexuality. In addition, personal recommendations are often valuable, so perhaps you know someone from your local hospital or community group who may have a suggestion. Your doctor’s o ffi ce may also maintain a list of therapists and your insurance company will have a list of therapists included in their network. Regardless of who you choose, make sure the

therapist has had the appropriate education from a licensed training program. Qualified therapists may include psychiatrists (MD), psychologists (PhD, PsyD), social workers (LCSW), and counselors, who should have graduated from an accredited school and have the proper credentials. While counseling is often obtained from religious clergy or community leaders -- and can be very helpful -- therapists provide a di ff erent type of support. Keep in mind that a therapist might seem like a good fit based on a recommendation, expertise, type of therapy practiced and training; however, it's not always going to be a good fit. It's not uncommon to switch therapists until finding one you have a connection with. Remember, therapy is kind of like dating. You might have to talk to a lot of people before you find “the one” for you. Therapy Post-Surgery “Surgery is a PTSD you forever, whether you are the patient or the family member, and the psychological stressors are best dealt with in therapy.” The event is not over, even after the surgery and physical recovery. Ann explains: “For Julie, it was important for her to have someone besides me to talk with and help her process what she went through and how the surgery a ff ected her life.” The needs of the caregiver are also important. “I had to be in an unemotional mindset to get through the surgeries and be able to make medical decisions for Julie,” said Ann. “I would not have been able to function from an emotional place. Afterwards, it takes time to process the ongoing experience of recovery, life after a major surgical event, and your own memories of all you have witnessed and felt.” p Ann and Julie, with Pikachu (post-traumatic stress disorder) event,” said Ann Thal, of Maryland, whose wife, Julie, had seven visits to the surgical suite in eight days in 2020. “It’s with

Resources from The Marfan Foundation: While you are searching for a therapist, The Marfan Foundation has resources that might be helpful. We have webinars covering topics such as depression and anxiety, self-care, and mindfulness. We also o ff er virtual support groups on many di ff erent topics. Wherever you are in your mental health journey, we’re here for you, so check out what we have to o ff er!

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MARFAN MARATHONERS CRUSH FUNDRAISING GOAL

For many months, eight dedicated people from across the country, and one in Amsterdam, trained to run the 26.2-mile New York City Marathon on November 7 to fundraise and create awareness for Marfan, Loeys-Di- etz, and Vascular Ehlers-Danlos syndromes. Each runner has been af- fected by these conditions through a loved one*, and their inspirational stories were shared on their fundraising pages. Not only did each runner surpass personal fundraising goals, but collectively, they raised $80,000 ($55,000 over the goal!). We want to give a special shout-out to the father/daughter duo, Jim and Tess Prutow, who raised $50,000! The Marfan Foundation would like to extend a huge thank you to the marathon team for their astounding level of commitment. We applaud them for the mental and physical endurance they demonstrated to complete the largest marathon in the world! The Marfan Foundation Marathon Team • Ivana Batstra, Amsterdam • Chris Borman, Groveport, OH • Susan Cooke, Jacksonville, FL, & Christine Kledzik, Dover, DE

• Julia McNeill, Smithtown, NY • John Murray, Shoreview, MN • Lisa Paye, Grove City, OH • James & Tess Prutow, Poway, CA

*Please note, it is recommended that people with Marfan and related conditions should not participate in competitive or contact sports.

“She goes above and beyond in everything, and the least I can do is train for four months and do something to make more awareness for her condition,” said Julia McNeill, whose sister, Caroline, has Marfan syndrome. “It was without a doubt the greatest experience of my life."

p Susan Cooke and Christine Kledzik cross the finish line after completing the marathon on behalf of Christine’s son and Susan’s nephew, Brendan, who has Loeys-Dietz syndrome. Upcoming Special Events

We are so excited about our line-up of special events taking place around the country (and one online) between now and the summer. If you’d like to get involved with an event committee, please contact Deborah Goodman at dgoodman@marfan.org. More information about each event, including how to purchase tickets, is on our website: Marfan.org/events.

▸ (Un)Corked Virtual Wine Tasting January 27 ▸ Heartworks St. Louis March 19 ▸ HeartWorks Chicago April 22 ▸ Evening with Heart Raleigh May 5 ▸ HeartWorks NYC May 24 ▸ HeartWorks Houston June TBD

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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 September 1, 2021, and December 3, 2021. 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.

Adam Hani ff Amber Harbison Lincoln Hervatin Norman Hirschkowitz Mandy Irvin Cassie Jennings Mo Jurgens Bennett Kitchens Evelyn Kokotis Matthew Korochik Dr. Ronald Lacro Steve Lau Brenda Lawrence Stacey Levine Elysia Luna Jan Lynch Georgia Mace Eleanor Magel-Lubka Talulla Maher Janet Majewski Kyle Mann Matthew Marcus Isabella Marin Piper McCormick Caroline McNeill Amelia Meyers Mark Michrina Macon Mitchell Claire Moore Eleanor Moore Danny Murphy Dr. Enid Neptune Carter Nietrzeba Torsten Nordstrom Josh Nowak Rory O’Connor

Amanda Rivera Nicole Rodriguez Joanna Rodriguez Peter Roos Joshua Rosenblum

Thomas Clarke Nancy Conger Crystal Cushing Twyla Davis Randal Dehne Kelsey Dresser Frederick Duzzie Michael Enbar Eric Fitzgerald

Sandy Morris Paula Neil Joseph Neustadt Anne Newman Kelsey Faith Panaccione Brenda Parker Christopher Paulsen Vince Payne Vicky Prager Trey Price Emily Rauschenbach Tyler Reed Brieley Reiland Danielle Richardson Daniel Richardson Ilene Roberts Arnold Rosenthal David Schettler Spencer Sellas Bill Selvitelle Jeremy Semano ff Naomi Siegel Ralph Sinclair Gurcharan Singh Barbara Slee Catalina "Cat" Smith Easton Srofe Lucy Stockslager Margaret Stolle Bodhi Swindle Michelle Swindle Abel Tahirkheli Greyson Templeton Lauren Tenney Luke Terrell Ann Reinking Jadzia Renaud Andrew Rexroth

Donations In Honor Of

Aaron Aguayo Cameron Allen Micah Amdur-Clark Nick Anzalone Christopher Baier

Brooke Roth Noa Russell

Caden Schae ff er Michael Scribner Colin Shields Ralph Sinclair Evan Smolen Daniel Sperry Ethan Stambler Darrall Steinbach Lowell Stephens Philip Storace Nicholas Sumberaz Peggy Tassett Burke Taylor Nicolas Teune Jim Towns Kiara Updike Diane Walsh Benjamin Weisman Mariah Wessel-Draper Emily Wheeler Connor Wilson Anna Witiuk Je ff ery Wooden Samuel Woodhouse Donations In Memory Of Carol Adame James Christian Barfield Michael Beardslee Paul Bender Barbara Beverly Randy Boelkins Michael Brandt Elliott Braverman Brody Bullock Paul Burke Joseph Casale, Sr. Sarah Cayo Michael Lynn Charlton Henry Clark

Raegan Bailey Caroline Bange Ricardo Belchior Elliott Bobbe Sebastian Brady Dr. Alan Braverman Edward Brenner Maya Brown-Zimmerman Ken Butrym Krystal Camire Susan Campbell Renee Castillo Priscilla Ciccariello Florence Cook Christian D'Angelo Sofia Maria de la Garza Lynn Diehl

Sarka Friedrichs Andy Geoghegan Bruce Gold Maria Gomes Stephanie Green Judy Hak Betsy Hallgren John Heinemann Saundra Hesse Willa Hilton Walker Norman Hirschkowitz Mandy Irvin Renee Jessup Judy Jetrick Gayle Johnston Sarah Lynn Jones Mary Kau ff man

Donald Drummer Frederick Duzzie Dr. Kim Eagle Cory Eaves

Kevin Keyser Martha King

Hugh Kleinpeter Guion Kleinpeter Julie Kurnitz Jonathan Larson Brian Laughman Brenda Lawrence Alexis Lawrence Milan Lazorcik Allyson Marisch Brendan Martin Garry May Joey Mazzuca L.A McConnell Connor Metz Mark Michrina Evelyn Mitts Andrew Morrell Joshua Morrell Helen Malko Steve Maloy

Ellen England Valeri Esartia James Ferris Ryan Finn Skylar Flewelling William Henry Floyd, IV Sarka Friedrichs

Adian Gareis Leila Gendron Catherine George Laurel Giacone Haley Goley Heather Gooch Anna Gould Alan Grainger Drew Graves Ashley Gray Kruse Isabella Green Daniel Gregoire

Noah Padilla Lucy Padilla Vince Payne Anne Power James Prutow Dawn Reiner River Reiner Brady Relias Jadzia Renaud

Brandon Theiss Lorie Thompson Kevin Thrasher Rosy Wakat Arnold Warner Averie Williams Dalton Williams IV

James Richardson Danielle Richardson Ayden Riggs

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