Connective Issues Spring/Summer 2025

Spring/Summer 2025

GASTROINTESTINAL ISSUES Q&A

FAMILY SUPPORTS HOPEFUL FUTURES

FROM EYE DOCTOR TO DIAGNOSIS

Welcome to the Spring/Summer 2025 edition of Connective Issues ! Priority 1 for everyone at the Foundation is enthusiastically focused on getting ready for our in-person Conference, July 10–13, in Atlanta. As always, we will convene medical experts alongside our community members for both learning and social engagement. For more information or to register for our milestone 40 th Conference, visit Marfan.org/conference.

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 so everyone with genetic aortic and vascular conditions can live their best life. CONNECTIVE ISSUES SPRING/SUMMER 2025 VOLUME 44 | NUMBER 2 Connective Issues is the newsletter of the Marfan Foundation. It is published three times per year. Inquiries should be addressed to: brandcomms@marfan.org This issue of Connective Issues is made possible through a grant from The Chu and Chan Foundation. Connective Issues is produced by: Executive Editor, Lead Writer: Susan Benvenuti Foundation VP, Integrated Marketing Communications Visual Consultant: Kim Fischer Graphic Designer Contributing Strategist: April Dawn Shinske Foundation Chief Communications and Marketing Officer Learn more and get involved at Marfan.org.

In addition to a Conference preview, stories in this issue highlight what we can accomplish together through our outstanding volunteer staff partnerships. Our end goal is to help people learn more about their conditions, connect with the community, and thrive in ways they find most meaningful. Don’t miss: • A story about how we continue to expand our Spanish-language offerings—now including a support group and updated Spanish language educational videos, and planning for our 5 th Spanish Language Summit on January 24, 2026. • A feature about Alaina, who has learned over a lifetime how to find their best tools for thriving alongside Marfan syndrome. • A recap of our amazing 10 th Houston Walk for Victory where our entire community shined, and our VEDS community commemorated the 5 th anniversary of the VEDS Movement. • A story about why the Green family finds it absolutely essential to support hopeful futures. • A piece focused on how “routine” visits for eye exams can lead to the diagnosis of genetic aortic and vascular conditions. We welcome a community very familiar with eye-related conditions to the Foundation: people living with Stickler syndrome. Stickler syndrome is a genetic condition that affects connective tissues that support and give structure to organs in the body, primarily in the face, ears, eyes, and joints. Many thanks to Connective Issues editor Susan Benvenuti, VP of Integrated Marketing and Communications, for making every issue of CI uniquely special and to everyone who contributes to the success of this publication. Looking forward to seeing many of you at Conference as well as welcoming new members of the Stickler syndrome community. Onward….

Michael L. Weamer President & CEO

ON THE COVER: “Every child deserves the chance to live a full and vibrant life, and for my son, that chance lies in the groundbreaking research and support your generosity can provide. Your donation isn’t just a contribution, it’s a lifeline. It’s the hope for better treatments, the promise of improved quality of life, and the possibility of a brighter future for those affected by Marfan syndrome.” - Amanda Justen

The Justen family from Illinois is one of the faces of the Foundation’s Membership Campaign, a major fundraiser taking place through June. Become a member or renew now at Marfan.org/membership.

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

Watch the Justen family’s story on our YouTube Channel or scan the QR code.

Community members told their stories for the #PictureMe campaign on social media

Early diagnosis can mean game-changing medical management that vastly improves quality of life and longevity, and thanks to the outstanding support of our community members, Marfan Awareness Month in February and Loeys Dietz Awareness Month in March touched more people than ever before. We reached 784K total users during those months through our digital posts—which were shared approximately 6,000 times across both campaigns. More than 990K people saw our pages and profiles, and more than 1,300 new followers joined the Foundation family digitally during the campaigns. Joining the effort, community members had governments proclaim the awareness months in regions across the country and several landmarks were lit in our organizational colors. Internationally, we amplified messaging in partnership with global organizations serving genetic aortic and vascular conditions. T-shirt design contests were part of the lighter side of awareness, with winning entries sold in our online store. View our shop at bonfire.com/store/marfanfoundation. Marfan and Loeys-Dietz Awareness Months Reach 990K

Marfan Awareness Month Highlights During Marfan Awareness Month, the #PictureMe campaign gave community members a platform to share any aspect of life alongside Marfan syndrome. Media coverage was also a cornerstone of the campaign. Marfan Awareness Month kicked off with a story in Newsweek featuring the Whitehead family centering on parenting and Marfan syndrome. In addition, a free webinar helped attendees navigate what healthcare professionals should know to effectively manage Marfan syndrome. And a partnership with Marfan Europe Network meant we were able to offer facts about Marfan syndrome in multiple languages

Loeys-Dietz Awareness Month Highlights During LDS Awareness

Month, the Loeys-Dietz Syndrome Foundation (LDSF) celebrated 20 years of awareness beginning when the condition was formally identified. Through first-person accounts, our “A Day in the Life” social media campaign from community members, government proclamations from around the nation, a

 The Morales family received a proclamation declaring March LDS Awareness Month

National Health Council guest blog, and science-based resources (read about the new LDS FAQs on page 11), the Foundation community ensured more people will #KnowConnectThrive. Free sensory stickers celebrating 20 years were sent around the globe to help raise awareness, with community members encouraged to place them prominently on items like laptops and water bottles as conversation starters and a reminder to embrace the moment.

while also aiding Marfan support organizations around the globe.

Read the Whitehead’s feature in Newsweek

The number of people within and outside of the Foundation family reached this year is a testament to the engagement of our community members. Thank you for making Marfan Awareness Month and Loeys-Dietz Awareness Month 2025 the most extensive and far-reaching condition-specific campaigns in Foundation history!

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GI ISSUES with Dr. Tony Guerrerio, MD, PhD

General GI Concerns in Connective Tissue Conditions What are the most common gastrointestinal issues in people with connective tissue conditions? Gastrointestinal issues are very common in all humans, but some are more common in those with connective tissue conditions than in the general population. The treatments and investigations for these issues are similar to those used for the general population. In Marfan syndrome, there can be difficulty gaining weight. This is typically more of a problem in younger people, especially in some children with Marfan syndrome. The exact reason for this is not clear. Similarly, those with Loeys-Dietz syndrome (LDS) also can have difficulty gaining weight. In LDS though, there is an increased risk of allergies to foods and the environment, eczema, and asthma. These inflammatory conditions can use up extra calories or make it hard to absorb calories. Sometimes supplements are needed to help boost calories, especially if surgery is planned in the near future. People with LDS are also at risk for two inflammatory conditions of the intestines. One is a slow-motion food allergy called eosinophilic esophagitis (EoE - more on this below), and the other is called inflammatory bowel disease (IBD). In IBD, white blood cells get confused and think there is an infection in the intestines when there is not. Both of these conditions can lead to trouble gaining weight. EoE typically leads to trouble swallowing and reflux, while IBD typically leads to diarrhea and blood in the stool. Both conditions are diagnosed and treated following typical protocols. Constipation is also a common problem, especially in LDS and Vascular Ehlers-Danlos syndrome (VEDS). Almost all those with VEDS and most of those with LDS can benefit from a daily osmotic stool softener (PEG3350 (miralax/ glycolax) or magnesium citrate) to help manage bowel movements. The osmotic stool softeners only work well when they are a daily medication and do not tend to work well when used “as needed.” Untreated constipation can slow stomach emptying, worsening reflux symptoms, and can lead to abdominal pain and cramping. It is thought specifically for VEDS, treating constipation will lessen the chance of a colonic perforation, or tear, in the large intestine. Disorders of gut-brain interaction such as irritable bowel syndrome (IBS) may be more common in those with connective tissue conditions. IBS is characterized by symptoms with no damage to the intestines (unlike IBD where the inflammation is actually damaging the intestines). IBS is quite common in the general population and there are many ways to address the symptoms.

Diagnostics & Treatment When should someone see a specialist? What are the indicators? Is it important to find a specialist/center who has experience with these conditions? You should see a specialist if your GI symptoms are significantly impacting your quality of life or if there are any warning signs or changes in your lab measurements that can’t be explained by another condition you have and are pointing to a possible problem in the GI tract. Also, don’t be afraid to see a second GI provider if you don’t “click” with the first one. Seeing someone with experience is a good idea because the provider will already know about some of the specific issues mentioned above. However, depending on where you live that might not be a reasonable option for you. You want a doctor who will listen to your story and take your concerns seriously. They should be willing to learn about your condition. And their plan should make sense. Even if you have no medical background, your doctor should be able to explain their plan to you in a way that makes sense to you. Do these patients tolerate standard GI medications (e.g., PPIs, prokinetics) well, or are there concerns about side effects or interactions? Out of an abundance of caution, it is best to avoid using enemas as well as stimulant laxatives, senna (ex-lax) and bisacodyl, in VEDS, again because of the risk of colonic perforation. People with LDS are predisposed to EoE. Proton pump inhibitors (PPIs) are one of the best medicines for treating

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EoE. However, PPIs’ side effect is that they slightly increase the risk of fracture, and people with LDS may have weaker bones. So, this needs to be part of the discussion with your doctor. However, for EoE there is a new injectable medication that avoids the fracture risk of PPIs. Are there any newer treatments, surgical interventions, or research developments that offer hope for better GI symptom management in these conditions? There are so many new treatments for many of the GI symptoms, and newer research is looking at treatments such as acupuncture, acupressure, transcutaneous electrical stimulation, and other non-invasive treatments that harness the power of the nervous system and the interaction between the GI tract’s nervous system and the brain to help modulate a person’s symptoms. Specific GI Conditions & Symptoms Patients sometimes report difficulty swallowing (dysphagia). Is this due to connective tissue laxity, vascular issues, or something else? One reason for dysphagia would be something called Eosinophilic Esophagitis (EoE). EoE is a slow-motion food allergy where you get allergic white blood cells called eosinophils infiltrating the lining of the GI tract and irritating it. This can happen in any part of the GI tract, but the most common part is the esophagus. With the irritation it becomes harder for the esophagus to push the food down. This slow-motion food allergy is different from the fast-food allergy where you can have rashes, or trouble breathing or a drop in blood pressure. The slow-motion food allergy does not turn into the fast allergy or vice versa, but you can have both types of allergy to the same or to different foods. The blood and the skin tests only work for the fast allergy. They do not indicate what food might be causing the slow allergy. People with LDS are more likely to have both the slow and fast allergy than the general population. The only way to tell if you have the slow allergy is with an endoscopy with a biopsy. If this does confirm EoE there are treatments to relieve the inflammation, and the trouble swallowing will abate. There is no increased risk of EoE in those with VEDS and Marfan. Severe & Life-Threatening GI Complications Are there specific warning signs that indicate a GI complication is becoming serious and needs urgent medical attention? Severe abdominal pain, pain out of proportion to objective changes, inability to find a comfortable position, severe vomiting, or a hard, painful abdomen are all warning signs that you should see your doctor or go to an emergency room. With connective tissue conditions, if you have severe chest or abdominal pain and go to an emergency room, you should get a CTA or MRA done to look specifically for an aneurysm or dissection. These studies are tuned to look specifically at the blood vessels, and that is what the radiologist will direct their attention toward. If this

happens to you and the report comes back that the blood vessels all look fine and you still have the symptoms, ask to have the radiologist look at the GI tract specifically. Some GI complications that can occur in connective tissue conditions have been missed in the initial look at a CTA or MRA. Are there specific guidelines for screening or managing mesenteric artery aneurysms or bowel perforations in these patients? Mesenteric artery aneurysms will be picked up with abdominal and pelvic arterial imaging that will be part of your standard screening schedule. Bowel perforations are a surgical emergency and are much more of an issue in VEDS as opposed to LDS and Marfan. They are not progressive outpouchings that get worse and worse and then perforate, they are just tears that occur. They are more common in males, seem to happen in late teenage years to young adulthood, and are more common in certain VEDS genetic variations than in others. Frequently, they are the event that leads someone to be diagnosed with VEDS. The type of surgery immediately after a perforation is, in general, agreed upon; the surgery after the immediate management of the perforation is a topic of active discussion among doctors and surgeons taking care of people with VEDS. Lifestyle & Long-Term Management How can physical therapy, abdominal massage, or other non-medication approaches help with motility issues? For longstanding constipation, the muscles that need to work together to have a bowel movement start to not work together, called pelvic floor dyssynergia. For those with pelvic floor dyssynergia, even with the correct medical therapy, getting the constipation under control can be challenging because without the muscles working together, it is very difficult to keep the rectum empty. Pelvic floor physical therapy can be helpful towards getting these muscles to start to work together. Another technique that can be useful in lessening GI symptoms is behavioral psychology. You are looking for a practitioner who focuses on cognitive behavioral psychology and has experience working with people with abdominal pain. The exercises through this approach help minimize the impact of the GI symptoms on your daily activities.

This article highlights some of the questions and answers.

To view the entire GI Issues Q&A with Dr. Guerrerio, scan the QR code.

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 Mandy (middle center) and Team Shaw

March 2025 marked 10 years of the Houston Walk for Victory (WFV). The WFV isn’t just a one-day event; it has grown into a large, connected community that is pushing for progress and making an impact. What started in 2015 at Discovery Green with 50 teams and over $135,000 raised has become a major gathering for the Marfan, VEDS, and related conditions community in Texas. This year, the walk hit two major milestones: its highest fundraising total ever—$250,000—and its largest team to date, with Team VEDS bringing in 470 participants. Team VEDS was first organized by Bella Marin in 2020 with 65 members and has remained the largest VEDS team every year among 23 WFV events across the U.S. To mark five years of the VEDS Movement, the Foundation hosted a post-walk celebration to bring people together and celebrate how far the community has come. “For VEDS being so rare, it’s incredible to have the largest VEDS team,” said Bella. “We want to make sure that no person with VEDS is left behind and that others have the support that we did not have for so long. There’s strength in numbers, and Team VEDS shows that.” Since the Houston walk began, participants have helped raise over $1.43 million, supporting essential research, services, and awareness efforts. This year’s event also recognized long-term supporters with awards, including the Beckholt and Shaw families, as well as Dr. Joseph Coselli and Dr. Shane Morris. The Houston WFV also relies on the generosity of dedicated supporters like this year’s Presenting Sponsors, Tracey McBride with Aloha Beauty Lounge and Aven McBride with American Communication Construction. For Mandy Shaw, the walk has always been personal. She has been attending since the beginning after her husband passed away from Marfan syndrome in 2013. Six months after that first walk, her son was diagnosed as well. “I never wanted my son to ever feel the sense of loneliness my husband felt by not being around other people that had Marfan syndrome,” said Mandy. “Each year, it’s like a family reunion where you see all the people you haven’t seen in a year, and everyone just 10 YEARS OF COMMUNITY & IMPACT Houston Walk for Victory

 Shelley (left) and Team Peggy

 Max, Curtis, and Vivian

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FOUNDATION SELECTED AMONG 50 BEST NONPROFITS TO WORK FOR This spring, the Marfan Foundation was selected as one of the 2025 Best Nonprofits to Work For – a distinction awarded to only 50 nonprofits annually. “We are incredibly proud of our staff for earning recognition as one of the Best Nonprofits to Work For in 2025. Every time I engage with our team, I am struck by their unwavering dedication, tireless efforts, and the genuine love they have for our community,” said Foundation Chair Bert Medina. The Best Nonprofits to Work For survey and awards program identifies and recognizes the best employers in the nonprofit industry, benefiting the industry’s economy, workforce and businesses. Nonprofits from across the United States entered the two-part survey process and 50 were chosen. “Our team brings not only immense talent and expertise but also incredible heart to our mission every day,” said Michael L. Weamer, Foundation President and CEO. “I am immensely proud to work alongside such a committed group, united by a shared purpose: saving lives and empowering our community. Together, with our extraordinary volunteers, we can enhance quality of life, extend longevity, and ultimately pursue cures for those affected by genetic aortic and vascular conditions.”

 The VEDS community celebrated five years of the VEDS Movement after the WFV

gets you and your life. Coming to the walk brings that sense of community to my son, but also, it’s been important for me to be surrounded by other moms who understand.” In 2020, Shelley Hartman created Team Peggy to honor her mother who passed away from complications of Marfan syndrome. She and her family want to help fund research and spread awareness for Marfan syndrome and make the two-hour trip to Houston each year to be a part of WFV. “I felt it was too late for my mom, but research might help me or definitely my son,” said Shelley. “My hope is to find a cure, and right now, I want to advance research. The progress made since my mom had her aortic dissection is amazing. And awareness is so important. People need to know what these conditions are and get diagnosed sooner.” “I also absolutely love seeing my doctor, my son’s doctor, and my mom’s surgeon there walking with us and supporting Marfan research.” Curtis Bates first learned about the Houston WFV from a VEDS Facebook group. He attended with his grandchildren, including Max, who has VEDS. “If I can help raise funds for research that could help prevent a parent from losing a child, or a child from losing a parent or sibling, it is important to me,” Curtis said. “I hope that advances are made in treatment so Max can lead a long and normal life.” Curtis’s favorite part of the walk each year has been getting to know others in the VEDS community. “I have made a lot of friends in the VEDS community,” said Curtis. “I love my VEDS people and hope we can continue to get together to raise money, raise awareness, and enjoy the fellowship we have.”

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

 Kelli Coselli, Mandy Shaw, Dr. Shaine Morris, and Steve Beckholt were honored for 10 years of support

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Why We Give Supporting Hopeful Futures

“Isabella had unexplained health issues since birth, but when we finally got the diagnosis in April 2021, it changed everything,” said dad Kevin. At age eight, Isabella was diagnosed with Vascular Ehlers-Danlos syndrome (VEDS) after her mother Heidi could clearly see her veins along her jawline. Isabella, who had been active with jiu-jitsu and baseball and enjoyed roller coasters and trampolines, had to shift her activities significantly.

“Her condition is always in the back of our minds,” said Kevin. “We had to rethink everything, from family vacations to everyday activities. Now, we always need to consider what medical facilities and help are nearby.” At first, Kevin and Heidi only had limited information about their daughter’s condition. Then they dis covered the VEDS Movement online, a division of the Marfan Foundation. They attended their first Marfan Foun dation Conference in 2022 where, for the first time, they were able to meet others in the VEDS community. Since then, they have become more involved, attending symposiums,

come a monthly Foundation donors in an effort to help educate healthcare providers and further research.

“Because VEDS is so rare, we found local doctors and emergency person nel weren’t familiar with it so there is a need to spread awareness as well as advocate for those affected,” Kevin said. “The Foundation provides critical support and resources to raise awareness, fund the latest research, learn from those affected, and advocate for us within the medical community. This is so critically important to ensure adequate care in life-threatening situations as well as help navigating the day-to-day challenges we all face in life.” The Greens also acknowledge the importance of community support. “When we first got the diagnosis, we felt very afraid and alone,” said Kevin. “Who else had this disease? Who understands what we’re going through? The VEDS Movement provided us with the knowledge that there are others out there who can share their experience and support, and we want to provide the same from our end.” Kevin is hopeful his family’s support will help contribute towards a cure or lasting treatments that can improve the lives of people living with VEDS. “If we can find a way to prevent fatal emergencies from occurring, especially in children, that would be so wonderful,” he said. To make an impact through donation or legacy giving, please visit Marfan.org/give . To make your contribution monthly, simply click the “donate now” button and choose monthly. For questions about giving, please contact Deborah Goodman, Senior Vice President, Donor Relations, at dgoodman@marfan.org.

webinars, and other conferences. Heidi also serves on the steering committee for the VEDS Movement, and their family actively participates in fundraising, by reaching out to friends, loved ones, and colleagues for support. In addition, the Green family made the commitment to be

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 Dr. Sherene Shalhub (right) with Dr. Lisa Wilsbacher, Conference 2023 Sherene Shalhub, MD, MPH I’m truly looking forward to connecting with colleagues and sharing ideas that push our field forward. Being part of a forum that fosters collaboration is always energizing. Conference creates a space where meaningful conversations happen. It brings together diverse voices, cutting-edge research, and practical strategies that strengthen our community and elevate our collective impact. Come with curiosity and leave inspired. This conference offers not only incredible learning opportunities but also a welcoming community where your voice matters. It’s the kind of experience that stays with you long after it ends. Glen Iannucci, MD I’m excited to attend the Marfan

Our 40 th Conference is the place to be! Join your Foundation family for a fun-filled weekend of connection, a 40 th Celebration & Victory party, and the chance to learn more about Marfan, Loeys-Dietz, and VEDS from the brightest minds in the field. Hear from more than 40 of the world’s foremost medical experts! From cardiologists, surgeons, geneticists, orthopedists, and more, Conference will have the latest information you need to stay up to date on Marfan, Loeys Dietz, and VEDS. Register today to meet the experts in person and get your questions answered. Conference offers more than 60 educational sessions and workshops. Some medical topics covered include surgery, pain management, vision issues, orthopedic care, oral health, genetics, exercise, and family planning. There will also be workshops covering quality-of-life issues like mindfulness, art, traveling, and more, as well as onsite support groups and many opportunities for connection with the community. Sign up today! Learn about the speakers, workshops, and networking opportunities at Marfan.org/conference . Planned Medical and Mental Health Presenters Anna Agoston, PhD

Foundation Conference in Atlanta because we [Children’s Healthcare of Atlanta] are the host institution, and we can’t wait to welcome everybody. It’s always a great time to reconnect with national experts in Marfan syndrome and related conditions, as well as provide a service to the community and attendees.

Ron Lacro, MD Rebecca Leleiko, MD

With last year’s conference being virtual, this year represents an opportunity to be back side-by-side with other patients, families, and healthcare providers. By attending, you can expect to gain knowledge that’s at the forefront of research and development for treatment of patients with Marfan syndrome and related conditions. Additionally, you’ll be able to connect with community members and other patients and families like yours, and certainly, we hope that there’ll be a dose of Southern hospitality since it is in Atlanta. Gretchen MacCarrick, MS, CGC I’m looking forward to being a

Nneka Alexander, PhD Adam Bitterman, DO Meg Boeglin, BSN, RN Juan Bowen, MD Alan Braverman, MD Maya Brown-Zimmerman, MPH, CGC Peter Byers, MD Mariah Corcoran, LCSW Richard Devereux, MD Jefferson Doyle, MD, PhD, MHS, MA(Oxon) Ismail El-Hamamsy, MD, PhD Sylvia Frazier-Bowers, DDS, PhD Ben Gold, MD Steven Goudy, MD, MBA Duke Cameron, MD Heidi Connolly, MD

Bradley Leshnower, MD Mark Lindsay, MD, PhD Gretchen MacCarrick, MS, CGC Irene Maumenee, MD Dianna Milewicz, MD, PhD Shaine Morris, MD, MPH Nupoor Narula, MD Enid Neptune, MD Siddharth Prakash, MD, PhD Reed Pyeritz, MD, PhD Diane Rich, PT, DPT Mary Roman, MD Joshua Rosenblum, MD, PhD Melissa Russo, MD Denver Sallee, MD Sherene Shalhub, MD, MPH Cori Snyder, MM, LPMT, MT-BC Paul Sponseller, MD Stephanie Wechsler, MD Bryan Wells, MD Byron Williams, Jr, MD

speaker at Conference because I al ways learn from attendees—what is on their mind and what their ques tions and observations are. It helps me go back and answer questions in my own clinic. Conference is really invaluable. I guarantee there will be a new re

Anthony Guerrerio, MD, PhD Kathryn Holmes, MD, MPH Glen Iannucci, MD

Luciana Young, MD Alyssa Zellner, NP

search topic, interaction where you learn from another family or individual, or a new piece of knowledge that will expand how you view, treat, or relate to your condition. The knowledge, connections, and memories you make at Conference will sustain you and your family for years.

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HOW A VISIT TO THE EYE DOCTOR CAN LEAD TO A DIAGNOSIS

Once suspicion of Marfan syndrome or a related condition is raised, ophthalmologists collaborate closely with specialists, often referring patients to dedicated genetic aortic and vascular/connective tissue clinics. “We work closely with geneticists and cardiologists, assessing family histories to confirm dominant genetic inheritance patterns,” Dr. Doyle said. When it comes to treating dislocated lenses, many ophthalmologists approach management conservatively. Dr. Doyle, who performs lens removal surgeries (lensectomies), prefers to avoid surgical interventions unless absolutely necessary. “We initially aim for careful management using glasses or contact lenses,” he said. Surgery becomes a consideration primarily when severe vision impairment risks complications like amblyopia (lazy eye) in one or both eyes or affects a child’s quality of life and safety. “My decision-making focuses on functional needs rather than rigid numerical criteria, like can the child see adequately for school or safely navigate their environment?” Lens surgery, when required, utilizes minimally invasive techniques. “In younger children, lens removal involves two tiny, one-millimeter incisions. Procedures for each eye are performed separately, four to six weeks apart, with recovery facilitated by medicated eye drops,” said Dr. Doyle. “Older teenagers and adults typically receive artificial lenses through similarly small, self-sealing incisions, following a similar recovery timeline.” Looking to the future, ophthalmology research seeks to enhance diagnostic precision and patient outcomes. Dr. Doyle spearheads ongoing studies funded by the Marfan Foundation, investigating pathological eye growth in mouse models. “Our research explores why the eye grows excessively in Marfan syndrome and how we might prevent this,” Doyle says. “We are enthusiastic about potential new therapies stemming from these investigations.” “The eyes provide important clues about overall health. Recognizing these early indicators—like lens dislocation or severe nearsightedness—can facilitate early diagnosis of Marfan or Stickler syndrome, significantly improving patient outcomes.” ~ Dr. Doyle Linzy’s Story

A routine eye exam typically focuses primarily on vision, but it can also be the first step in diagnosing an underlying genetic condition like Marfan, Loeys-Dietz, or Stickler syndromes. Eye abnormalities, particularly severe near sightedness (high myopia) and lens dislocation (ectopia lentis) are common initial indicators that further testing is needed. “Severe near-sightedness in any child always raises my suspicion for Marfan or Stickler syndrome, with the presence of a dislocated lens making the former more likely,” said Jefferson Doyle, MD, PhD, MHS, who specializes in pediatric ophthalmology and genetic eye diseases at the Wilmer Eye Institute, Johns Hopkins. He is co-founder of Wilmer’s Genetic Eye Disease Center, where he sees more than 200 patients with Marfan and Stickler syndromes each year. “Often, parents notice their child isn’t seeing as clearly as expected or tends to hold things unusually close to their face,” said Dr. Doyle. “Severe near-sightedness and/ or lens dislocation, even in preverbal children, can alert us to an underlying condition. We try to correct the child’s vision with glasses or contact lenses as a first step in both conditions. For patients with lens dislocation, we may also consider lens removal if optical correction does not prove to be adequate.” Over her two decades in practice, Rachel Kuchtey, MD, PhD, a professor at Vanderbilt University in ophthalmology & visual sciences and member of the Marfan Foundation’s Professional Advisory Board, has seen a definite shift in diagnosis of these patients. “Before genetic testing became readily available, ophthalmologists provided critical clinical information for diagnosis, although the final diagnosis wasn’t always certain,” she said. “Now, we will typically initiate genetic testing right away. It’s not uncommon that we are the first to diagnose due to lens dislocation.” Much of the initial diagnosis can be made through a clinical exam using a slit lamp and measuring the severity of nearsightedness. According to Dr. Kuchtey, ophthalmologists may also perform a biometric scan, providing valuable data such as corneal thickness and curvature, eye axial length, and anterior chamber depth—parameters that are critical indicators of ocular abnormalities associated with connective tissue conditions.

Marfan.org/blog

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Violet’s Story “We weren’t familiar with Marfan syndrome, so we didn’t know what we were dealing with,” said mom Crystal. “We had her tested from birth because we thought she had some type of condition but didn’t know which one, and every test came back with nothing.” Crystal’s suspicions were finally validated after Violet’s kindergarten eye test at school indicated severe visual impairment. She was then sent to an optometrist who referred her to an ophthalmologist with the warning that her severely dislocated lenses could mean other things as well. She was later diagnosed with Marfan syndrome. Because Violet had severely dislocated lenses, she had both removed. She is legally blind and wears thick-lensed glasses. Violet has been healing well post-surgery, and currently, she has appointments every six months with her ophthalmologist. Violet will get bifocals this summer and will have the option to try contacts with her glasses so she can have glasses with a lower prescription which will reduce the thickness. “We weren’t told about a lot of the challenges or solutions for her eyes, but I’m thankful we found answers through friends, family, and the Marfan support group.”

Need help finding an ophthalmologist or care team specializing in genetic aortic and vascular conditions? Visit our Clinic Directory at Marfan.org/clinic-directory or reach out to our Help & Resource Center at Marfan.org/ask .

Callie’s Story During a routine doctor’s visit at age four, Callie failed her eye exam and was referred to an ophthalmologist who suspected Marfan syndrome after observing her taller stature and partially detached lens. Callie visits the ophthalmologist twice a year and has experienced multiple revisions in her prescription. She also underwent strabismus surgery when she was four to help with eye alignment. “It has been a constant battle to ensure she has the best prescription possible as she develops and grows,” said mom Jamie. “Having a great eye doctor and team has been instrumental. We are trying to avoid additional eye surgery as long as possible.” As Callie ages, one concern for the family is driving, but Jamie is hopeful there will be new treatments and/or vehicle technology in the near future. “We may consider surgery at that point if it will be safer for her to be on the road. However, our family plan to is avoid surgery as long as possible if it keeps Callie healthy, safe, and active.” Loeys-Dietz Q&A The Loeys-Dietz Syndrome Foundation is offering a new resource that provides answers to frequently asked questions received through the LDS support groups and Help & Resource Center. The questions cover a wide range of topics related to Loeys-Dietz syndrome and are aimed at providing clear, reliable information to those affected by the condition. Get answers to questions related to CPR, Social Security benefits, phenotypes/genotypes, medications, and more.

Visit LoeysDietz.org/FAQ or scan the QR code to access the document.

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Create Lasting Memories at Camp Victory Imagine laughing with friends under the stars, conquering a challenge you thought was impossible, or just feeling like you belong. At Camp Victory, you can create core memories that will last for years to come! Sign up today for an adventure filled with connection, growth, and unforgettable experiences - all in a safe environment. Camp Victory for Kids ★ Georgia: July 13-18* ★ California: July 27-Aug. 1 *The Georgia camp for kids will be held after our 40 th Conference, July 10-13, in Atlanta so kids can continue building friendships in an exciting and safe environment. Visit Marfan.org/conference for more information. Camp Victory for Families ★ Georgia: Sept. 19-21 ★ California: Oct. 24-26

“I will be one of the counselors at Camp Victory this year. Before I was a counselor, I was actually a CIT (counselor in training), and before I was a CIT, I was a camper. Camp Victory has always had such a special place in my heart because it was the first time that I met another person that had Marfan syndrome. That’s the great part about this...you get to meet people that have the same connective tissue disorder and that understand the same struggles that you have. If you like rock climbing, boating, swim

ming, arts and crafts, and archery, then Camp Victory is definitely the place for you. One of my favorite memories is the time we had a talent show and all the campers were able to pick a song. They got their props and their costumes, and really just showed their per sonalities when performing. If you all want to come out to camp this year, I’d love to make some more memories, and I can’t wait to see you all there!” -Kensie McComas, Camp Victory for Kids Counselor, Georgia

PICTURE YOURSELF HERE!

Sign up today! Marfan.org/campvictory

Upcoming June 1 – Walk for Victory: Milwaukee June 2 – Board of Directors Meeting (NYC) June 3 – 25 th Anniversary HeartWorks Gala NYC June 7 – Walk for Victory: Denver June 14 – Walk for Victory: Pacific Northwest June 14 – Walk for Victory: New York City June 14 – Walk for Victory: Chicago June 17 – Webinar: Cerebral Spinal Fluid Leaks (CSF) in Marfan and LDS June 7 – Walk for Victory: Philadelphia June 7 – Walk for Victory: New Jersey

Events 2025 July 10-13 – 40 th Conference & Health Fair, Atlanta July 13-18 – Camp Victory for Kids, GA July 27-Aug 1 – Camp Victory for Kids, CA September 13 – Walk for Victory: Cleveland September 19 – Aortic Dissection Awareness Day September 19-21 – Camp Victory for Families, GA

September 21 – Berlin Marathon October – VEDS Action Month October 5 – Walk for Victory: Indiana

October 24-26 – Camp Victory for Families, CA October 25 – Cincinnati Regional Symposium: Living Better with Marfan, Loeys-Dietz, and VEDS October (date TBD) – Walk for Victory St. Louis October (date TBD) – Walk for Victory Salt Lake City

June 21 – Walk for Victory: Boston June 21 – Walk for Victory: Michigan June 22 – Walk for Victory: Iowa

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Spanish-Language Offerings The Foundation is continuing its commitment to expand resources for native Spanish speakers in the U.S. and globally. Over the past four years, we have grown our range of offerings to provide essential information, tools, and support to our Spanish-speaking community.

Educational Summit Our Fourth Spanish-Language Summit was held virtually in January with close to 300 registrants from 11 different countries. Spain, Mexico, Chile, Argentina, and Columbia were the most represented. Attendees heard presentations from leading experts on genetic aortic and vascular conditions: Dr. Arturo Evangelista, Spain; Dr. Juan Calderón, Chile; Dr. Elena Montañés, Spain; and Dr. Laura Muiño-Mosquera, Belgium. Personal perspectives were presented by members of our worldwide Marfan, Loeys Dietz, and VEDS communities. Educational sessions from the Summit are available to view on our YouTube channel. The Fifth Spanish-Language Summit will be held Saturday, January 24, 2026. Watch for details later this year. Support Group In February, our monthly virtual Spanish-Language support group, Conexiones, celebrated one year of bringing together people with connective tissue conditions from all over the world, including Mexico, Guatemala, Costa Rica, Chile, Ecuador, and the United States. Informative Videos The Foundation ’ s YouTube channel, @TheMarfanFoun dation, has amassed more than 90 videos in our “Vídeos en Español (Spanish-Language Videos)” playlist. The videos feature medical experts discussing a variety of topics fo cusing on diagnosis, treatment, and quality-of-life issues. Digital Resources The Foundation’s website can be easily translated to access most of our online resources, and we have Instagram and Facebook pages, @lafundacionmarfan, in Spanish. Individuals can also ask

 Victor Daniel Solis (pictured front center) at the 2025 Houston Walk for Victory with his family After first joining Conexiones, Victor Daniel Solis from Texas—who speaks only Spanish—was able to connect online with others living with Marfan syndrome. In March, he attended the Houston WFV and was able to meet community members in person. He also plans to attend our 40 th Conference in July. 40 th Conference The Foundation will offer two sessions in Spanish at the 40 th Conference in Atlanta in July. Living with a Connective Tissue Condition: The Medical Side will be presented by Dr. Juan Bowen. There will also be an in-person Conexiones

support group meeting as well as a personal perspectives story from community member Joaquin Ramos.

medical questions through Our Help & Resource Center and communicate with our bilingual staff member.

“The Foundation’s resources that are available in my language have been useful and have allowed me to understand more about my condition. Attending the webinars, reading the articles, and listening to other people’s experiences, has brought me answers and relief.” ~Victor De la Garza, Monterrey, Mexico

 Victor De la Garza and Bonnie

Scan the QR code to share our Spanish Offerings flyer (in Spanish).

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“I Feel Strong and Powerful” Finding the Tools to Cope with Marfan Syndrome With more than 30 events across the country each year, the Foundation connects with thousands of community members affected by Marfan syndrome and related conditions. At the HeartWorks Gala in Chicago, Foundation staff had the chance to meet Alaina, an assistant director for an event technology and audio-visual company who was not there as an attendee, but coincidently as an event vendor. After the event, Alaina—who asked us to share that they are nonbinary—connected with the Foundation to share their Marfan story to offer support and encouragement to others.

★ Getting the Most in Life with Marfan “Marfan syndrome has pushed me to get the most in life,” said Alaina. Diagnosed at a young age, Alaina has never let Marfan syndrome define them. Whether it’s playing bass in a band, riding motorcycles, rock climbing, or practicing yoga, they have consistently chosen an active, adventurous lifestyle—balancing living fully with the ongoing physical and emotional challenges that come with their condition. Alaina’s connection to Marfan syndrome began when their father was diagnosed after treatment for a traumatic injury led doctors to recognize the signs in Alaina. Given their height and physical characteristics— like pectus carinatum (where the breastbone and ribs are pushed outward) and long fingers—Alaina’s parents sought medical treatment early on, leading to an early diagnosis. Due to regular monitoring by a pediatrician, cardiologist, and ophthalmologist, Alaina was able to navigate childhood and adolescence without major medical complications. “As long as I could remember, I’ve known that I’ve had Marfan syndrome,” Alaina said. “I’m lucky that my parents were proactive about it.” ★ Facing Medical Obstacles Things changed in 2015, when Alaina experienced their first major medical event, a spontaneous pneumothorax, or collapsed lung caused when air builds up on the chest cavity between the lungs. The following year, Alaina was surprised to learn their aorta had enlarged, signaling the need for surgery in the future, and a few years later, they underwent successful aortic valve surgery. In 2020, another doctor’s visit revealed their aortic valve had expanded again, which would require another surgery. “It was very alarming because I thought it was a routine annual checkup,” they said. “I remember feeling so scared and thinking, ‘Oh, my God, is my body failing?’” The surgery was successful, but a rare complication caused Alaina to have a much longer recovery period as well as ongoing short-term memory issues that they still continue to face today. ★ Prioritizing Mental Health Alaina’s health scares, combined with two separate accidents that resulted in a broken ankle and clavicle, resulted in health anxiety—an issue that kept building, leaving them feeling as though they were crumbling under its weight. Everyday tasks became overwhelming, sometimes even impossible. “At one point, I couldn’t even grocery shop without

 Alaina, left, and their girlfriend

having a panic attack,” they said. “I remember leaving my cart behind, sitting in my car, and trying to breathe. That’s when I realized I needed help.” Therapy helped Alaina turn things around. Through the support of mental health professionals, Alaina learned to manage their anxiety and build self-confidence, allowing their mind to heal. “I used to feel like I wasn’t good enough or like I was a burden,” they said. “These feelings from childhood, combined with my accidents and chronic condition, made me feel a bit insignificant.” Two years of intensive therapy helped them regain control and, now at 31, they continue to apply the tools learned to care for their emotional well-being. “I’ve never been better. I love waking up every day,” they said. “I’m going to work on what I can control, and I have the tools Alaina believes it is important to manage both mental and physical health when living with a condition like Marfan syndrome. “Not just physical labor, but mental stress affects your heart,” they said. “You have to vocalize when you’re overwhelmed, not internalize it, and take the steps to better your mental health.” Looking ahead, Alaina plans to continue embracing life fully while being aware of their limitations. “There are things I can’t do, but I focus on what I bring to the table,” they said. “Even with my chronic condition, I can work, contribute, and help others. I feel strong and powerful.” Alaina encourages others to find a balanced life alongside Marfan syndrome. “Know your limits and respect them, but don’t let them define you”, they said. “And most importantly, love yourself and your body.” Find resources at Marfan.org/mental-health. needed to help myself.” ★ Finding Balance

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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 December 1, 2024 - March 30, 2025. These donations support our programs and services that help create a brighter future for people living with genetic aortic and vascular conditions, including Marfan, Loeys-Dietz, and VEDS. Donations to Walk for Victory are not included. If you would like to remember or honor someone special, please visit Marfan.org/donate . DONATIONS IN HONOR & MEMORY

Christopher Paulsen Vince Payne Roberta Pfleging Josefina Piape Carolyn Powell Vicky Prager Jackie Prindle Frappa Quandt Erin Ramsey Jennifer Rankins Mark Redding Briley Reiland Ann Reinking Regan Remulla Jonathan Reyes Mark Rodriguez Linda Rohrbaugh Michael Rosales Donnie Roth Kaylana Lee Ryan Pam Scanlon Spencer Sellas William Selvitelle Jeremy Semanoff Randi Semanoff Ava Shaw Michael Shaw Thomas Edward Sheehan Vicky Simmerman Tristan Sims Justin Sivertson Erik Smith Steven Smock Glenn Snellgrose Yvonne Stockert Margaret Stolle Simon Sturgeon Bridget Sweet Michelle & Bodhi Swindle Greyson Templeton Luke Terrell Kokila Vakharia Barbara Vasilatos Jennifer Volpe Rosy Wakat Willa Hilton Walker Angelica Wankowski Karen Weil Alana Wesley Larry Wheaton Leslie Ann Whittington John (Jack) Wides Henry Wied David M. Williams Cheryl Williams Mark Wilson Denise Winter Rita Wronkiewicz

IN HONOR OF Lois Lorenz Acheson Andrea Aguiar All Marfan Folks Caroline Arpin Zoila Arredondo Tammy Asplund Lauren Atherton Celina Au Filip Avramovic B M Gabor Bagameri Joe Bailey, Jr. Maren Bain Nora Baker Caroline Bange Ricardo Belchior Team Berkowitz Billups Family Jerry Bluestein Izaak Boeglin John Bois Matthew Bonham Crystal Bonnichsen Adam Borkey Boston WFV Teams Rachel Bowen Juan Bowen Sebastian Brady Rebecca & Dr. Alan Braverman Sean Broadbent Beth Brobst Bonnie Brown Brody Bullock Christopher Burke K & B Butvick Quade Bywater Dr. Duke Cameron Abby Campbell Cristi Caviness Aaron Cheng Kim Christensen Avery Clark Huxley Clark Micah, Connor, & Audrey Amdur Clark Dani Beth Clements Leo Cole Florence Emma Cook Caitlyn Cooke Dr. Joseph Coselli Mia Costa Christian D’Angelo Jeffries Alexis Davis Camden Davis Tori Derrig Nana Devore Belle Banke Bibi Barrera Curtis Bates Rob Beard

James Dickey Lynn & Ben Diehl J. Doehring Haley Dostalik Joseph Doyle Nik Dragicevic Diane Dye Charles Dye Gabriella Earnhart Cory Eaves Celina Emmanuel Ellen England Mary & Billy B. Essers Diane Everett Rahel Eyassu Lindsay Fabri Eula Fehnel Eric Filipkowski Catherine Foscaldo Genevieve Franco Nikki Frey Sofía María De la Garza Heather Gooch Talia Gorecki Earnest Graham Peri Masterman Graybill Isabella Green Amy Grimshaw Jack Guglielmo Avery Gunn Hadley Gunn Landon Haddad Creasie Hairston Connor Hajj Joanne Hall Stella Hall Christian Hampton Brandi Hancock Harper Hancock Sherry Heldt Stan Henkin Kaycie Henry Rocco Hermogenes Lincoln Hervatin Beckett Hotchkiss Elizabeth Izquierdo Gail Jehan Thomas Jehn Sydney Jenkins Alix McLean Jennings Cassie Jennings Kerry Johnson Cooper Jones Tim Joyce Jameson Justen Ninah K Laurel Killough David Kirkbright Dave Holden Jace Holmes Tom & Tammy Host

Landans Ninjas Torsten Nordstrom Maryanne Nowacki Ryan O’Sullivan Mayte Padron Maria Francisca Riera Pan̈ ella Tristan Pasterick Nishani Patel Lottie Perkins Pamela Peterson Cullen Petrella Elizabeth Petty Alberto Pochettino Kendall Podson Bill Polis Dr. Reed Pyeritz Austin Ramirez Guidry Ramoin Joaquin Ramos Zaya Reed James Richardson Lisa Ritell Amanda Rivera Brock Robertson Adaleigh Rodriguez Dylan Rohrer Diane Ross Gary Sanderson Carlee Schwartz Elizabeth Senters Zahrah Shahab Michael Shaw Stancie & Fulton Sheehan - Amon Colin Shields Malakh Shrestha Austin Sisk Spencer Skrzypiec Evan Smolen SoCal WFV Teams Jared Pond Anne Power Cynthia Stephens Christopher Stuart Brooks Stukey David Style Nicholas Sumberaz Jessica Syma Lincoln Taubert Jane Taunton Angela Taylor Brinley Taylor Miles & Henry Tays Nicolas Teune Jason Theriault Tammy Thomas Maggie Tucker Townes Turner Tommy Villanueva Blake Walker Lucy Solove Christopher Springer Mila Stamer

John DeMasi Graham DiMartino Sweeney Doehring Karen Dragon Kelsey Dresser Clifton Stewart Durand Paul East Michael Enbar Peggy Encinia Kent Farley William Feinstein Max Fernandez Eric Fitzgerald Mark Fosdal Olasupo Fowowe Edwin Morris Friedlander Grace Friend Melodie K. Friesen Tim A. Frontz Sarah Fulop Bryan Funk Michael Jack Furey Matthew Garcia Tina Gee Gail Johnson Rachel Goodman Julie Goodman Andrew Gross Shawn Grunberger Gabi Guaipatin Linda Hacker Jennifer Harms Christine Hawley Kellie Germaine Hayes Chris Heaney Fred Hearn Richard D. Heim Michael Henter Willie Higa Richard E. Hill Dave Holden Max Hommel James Gerald Hon John Houghtelin David Hufnagle Scott Hunefeld Dwight Hurst John A. Houghtelin, III Eileen Ilberman Laura Ivan Michael “Mick” Jackson Ann Jarosz Jennie Courtney Whitmore Jensen Renee Jessup Kimberly Jessup Evan Jesus Lloyd Johns, Jr. Mike Johnson Bill Johnson

Brendan Kledzik Brady Klefman & Family Dawn Knowles Brice Kowall Sadie Kowall Nicole Kramer Rebecca & Sarah Kryger Dr. Ronald Lacro Haley Langford Hailey Laufer Milan Lazorcik Christian LeHew Judi & Jerry Lerman Sydney Lerman Leroy Family Sinclair Li Dr. David Liang Charles Lincoln Little Bear Landon Lloyd Anna Love Daniel Lugano Eleanor Magel Lubka Marfan, VEDS, Grant Martin Rachel Martin Grey Matthews Peyton Matthews Aven McBride Meredith McKeever Russell McLendon Marfan Foundation Staff Cannon Medina Bert Medina Amelia Meyers Ben Mickey John Lewis Mietz Franklin Miller Bryleigh Mon Barb, Lara & Aaron Mooney Claire Moore Madeline Moore Vix Morales William Morgan Hudson Morris Robbie Mudroch Christy (Fuerbringer) Nath Eli Neisius Theresa Newton Carter Nietrzeba Ben Kuehn Foxy Kusin Sara Kyle LDS & other CTC Communities Lulu Maher Bella Marin Kristina Milam Bailey Milburn Jess & James Milburn

John Ward Lauren

Michael Jordan Jerrod Jung Kenneth “Doc” Kelly Martha King, RN Robert J. Kitson

Wasserman

Alexandra

Weygand Whitehead Family Leslie Whittington Henry Wied Isabella Williams Matthew Williams Connor Wilson Anna Witiuk Vicki Witt Emma Yarbrough Heather Young Sei Zabala IN MEMORY OF Antone A Mary Beth Adams Adrian Vega Alcantara Yuen Kuen Au Jack Baldwin David Barry Walter (Bud) Beck Devi Bellows Scott Bergkamp Jeff Berkowitz Brandon Billings Michael Blake Warren Bonner Adam Borkey Gladys & Bernard Brady David Braverman Jennnifer Buffone Brody Bullock Leah Burke Everett Butts Jerry & George Butler Gabrielle Cannistraci Andie Carpenter Richie Anthony Casale Sarah Cayo Kuo-In Chang Peggy Chapman Brooke Chapman Joe Chavez Aileen Cheng Steve Ciccariello Richard Coren Callie Cornely Heather Cottier George Covington, Jr. Blaise Dafoe C.J. D’Angelo David Michael Darato Rita C. Dean John DeBlecourt Eric Ames Virginia S. Anderson Angelo Asimakopoulos

Julie Kurnitz Gene Kutner Tomas Lagos David Laufer Jack Laufer

Brian Laughman Alexa Lawrence Denise Lee Jack Lemmer Claire Levens Charles Lincoln, Jr. Mary Lobo Margaret Eddy Lucas Rudy Luna Shane Madden Richard Makanoff Harold Makanoff Frank Marin Norman Martin Mason Mascato Albert Matsuura Erica Mayton Margaret McCabe Scout McCauley Greg McLean Connor Metz Larry Meyer Jon Lewis Mietz Sarah Serbousek/ Miller Luis Daniel Kaitlyn Morales Andrew Morrell Sandy Moyer Mary Anne Muriello Debbie Murray Arnold Muzzarelli Lauren Bates Naddy Aron Nelson Joseph Neustadt Anne Newman Phil Newsome Patricia Nicolosi Jon Niemi Otto Nitschmann Zachary Nulph Michael Nygaard Rodney Oberle Sharon O’Malley Traci Owens Daniel Miriti Pacheco Carolyn San Paolo Rodriguez Montesino Haley Monts John & Eleanor Moore Ash Morales

Mike Yasick Tom Yasick

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