Connect Issues Spring 2021
DAD’S PERSPECTIVES ON MARFAN, LDS, AND VEDS
COVID VACCINE UPDATE
LOEYS-DIETZ AWARENESS MONTH IN JUNE
The Marfan Foundation’s mission is to save lives and improve the quality of life of individuals with Marfan syndrome, Vascular Ehlers-Danlos, Loeys-Dietz, and other genetic aortic and vascular conditions. 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.
“Hope makes us all stronger.” The Marfan Foundation marks an important milestone – 40 years of service to the Marfan community – this month. Born in Dr. Victor McKusick’s living room in Baltimore, full of belief in the strength of working together and hope for the future of those affected by Marfan syndrome and related conditions. Hope for life-saving treatments. Hope in emboldened research. Hope for future lives well lived.
Today, we find ourselves living the embodiment of all our founders’ hopes, with many medical and quality of life advances supporting our communities so they can now live longer, healthier lives. We’ve worked for and witnessed many successes along the way in all areas of our three-pronged mission of education, patient support, and research, executing strategically and passionately on the vision that our incredible Chair Emeritus Priscilla Ciccariello had when she got involved early on. And just like our founders in 1981, we too are looking to the future with hope. We continue to strive for a brighter future for those affected by Marfan syndrome. Leveraging our past successes, we are putting our strengths to work for the VEDS and Loeys-Dietz syndrome communities, and serve all those with genetic aortic and vascular conditions all over the world. The coming months are exciting for us as our community continues to get together at our Walks for Victory (many online this Spring) and celebrate Loeys-Dietz Awareness Month in June. July brings our first ever Virtual Annual Conference, with a creative and unique program driven by a team of our passionate and talented volunteers. This virtual conference will offer all the outstanding medical information you need, with an extra dose of opportunities to connect with fellow members of the community. After the year we’ve all been through, we are all ready to reboot our connections! You can meet some of our outstanding community members in this edition of Connective Issues and see the impact we’re making together, in the US and internationally. Through these efforts, and others, we light the torch of hope for the next generation. Much of what was unimaginable in 1981 seems commonplace to the young people in our communities today. We are building another future now with the help of our talented medical community, passionate volunteers and supporters, and every hope of every member of this community. It is wonderful to have your support, and your hope, on this journey.
Learn more and get involved at Marfan.org.
CONNECTIVE ISSUES Spring 2021 VOLUME 40 | NUMBER 2 Connective Issues is the newsletter of The Marfan Foundation. It is published three times per year.
Inquiries should be addressed to: Publicity@Marfan.org
This issue of Connective Issues is made possible through a grant from the Chu and Chan Foundation.
Michael L. Weamer President & CEO
THE MARFAN FOUNDATION 22 MANHASSET AVENUE PORT WASHINGTON, NY 11050 516-883-8712 | 800-8-MARFAN MARFAN.ORG
ON THE COVER: Roc Fittin, age 5, celebrating a positive cardiology scan in March. Roc was diagnosed with Marfan syndrome at age 2, after a visit to his eye doctor, who noticed his lenses were dislocated. He lives with his parents and two siblings in Rogers, Arkansas. Photo credit: Alex Fittin @theadoptivemom
DADS’ PERSPECTIVES ON MARFAN, LOEYS-DIETZ, AND VEDS p Top row (L-R): Steve Marmpan, Jeremias Tays, and Mitchel Pariani. Bottom row (L-R): Adam Bitterman, Derik Utz, and Ben Weisman.
Every parent has a different family role and perspective, especially when there is a child (or children) with a connective tissue condition. And if the offspring inherited the condition from the parent, that can impact the family dynamics too. This Spring, we invited several dads from our community to share their insights in a special Personal Perspectives Panel. The featured panelists were: Steve Marpman, who has Marfan and has a young son with Marfan; Mitchel: “It’s important to make it known that you are more than your diagnosis.” Derik: “We take things as they come…You just have to deal with it the best you can, affected and non-affected kids…The Marfan organization is a great place to go to get info. They will point you in the right direction. That's what they do.”
Derik Utz, who has a young adult son with Loeys- Dietz; Jeremias Tays, who has VEDS and has two young sons with VEDS; and Adam Bitterman, who has Marfan. Mitchel Pariani, MS, CGC, a genetics counselor at the Stanford Center for Marfan Syndrome and Related Aortic Disorders, provided insights and Ben Weisman, who has Marfan, served as moderator. Here are some highlights: Steve: “Being part of the community has been so important for me…It was important to me to bring Alex [to the annual conference] too…The key for us has been to normalize it, not to over dramatize it or downplay it. It's important to make it so they can relate to it without it being scary…The reality is what you make of it.” Adam: “Have a positive attitude. It’s okay to feel down, it’s okay to feel scared, it's okay to feel shocked when you get that first diagnosis.”
Jeremias: “Getting a diagnosis of VEDS was a bit of a challenge, but as time has progressed, we have learned to educate ourselves and be our own advocates…VEDS or any of these conditions-- they’re not weaknesses, but rather strengths. You utilize it as strength to continue and not dwell upon it. At the end of the day, you have to live your life no matter what.”
Save the Date!
Get ready to reboot your connections with the Marfan, Loeys-Dietz, VEDS, Stickler, and related genetic aortic and vascular conditions community at our 2021 Virtual Annual Conference, scheduled for July 8-11, 2021. From anywhere in the world, you will hear the latest updates on genetic aortic and vascular conditions, have access to medical presentations from the world’s leading experts on demand, and benefit from numerous opportunities to get plugged into the community. And, there will be no registration fee to participate. “We are excited about the value we can offer our community through innovative online programming,” said Cory Eaves, Chair of the Foundation’s Board of Directors. “While we are disappointed that we cannot meet in person again this summer, the Virtual Annual Conference, which we are offering free of charge, will give everyone an opportunity to reconnect with the Marfan, LDS, VEDS, and related genetic aortic and vascular conditions community.” The Virtual Annual Conference program, including presentations and online meet-ups, will be driven by the needs of the community, with the Foundation’s Volunteer Leadership Committee working hand- in-hand with the staff team to create a meaningful experience for all. “Even during this difficult time, the Foundation has continued to provide us with comprehensive medical information from the leading experts on our conditions,” said Heather Bergstrom, of Minnesota, a member of the Board of Directors and chair of the Foundation’s Volunteer Leadership Committee.
“While the conference will, as always, feature medical information, the focus will be on what most of us are missing during the pandemic: connections with the community. Having a warm and welcoming community is one of the pillars of the Foundation, and we are committed to creating a four-day online event that offers fun and engaging opportunities to meet and socialize with people with the same condition, in the same age range, with the same concerns.” The Foundation’s first virtual event, the International E 3 Summit, held last summer, was the largest event in our history. We hope you will join us for the 2021 Virtual Annual Conference, which promises to be another ground-breaking virtual event for our community. More details about the 2021 Virtual Annual Conference, including how to register, will be available this Spring.
PAB STATEMENT COVID-19 VACCINE The Professional Advisory While there are still many open questions about the allergic reactions reported with the COVID vaccine,
Board of The Marfan Foundation recommends that all approved groups get vaccinated for COVID-19. The position of the Professional Advisory Board is that the potential benefits of COVID-19 vaccination outweigh potential risks for individuals with Marfan syndrome and related conditions.
as per current guidance, people with a history of anaphylaxis (not due to vaccines or injectable medications) can still receive the vaccine but should be monitored for 30 minutes after being vaccinated. For people with a history of a severe allergic reaction to any vaccine or injectable therapy, consultation with an allergist would be prudent. The antibodies produced by the vaccine will not interact with commonly prescribed blood pressure medications, including beta blockers, ARBs, and ACE inhibitors. Please visit Marfan.org/COVID19 to access our latest Q & A video on the COVID-19 vaccines, featuring Dr. Kim Eagle, University of Michigan, and our recent webinar where Dr. Eagle and Dr. Enid Neptune, Johns Hopkins, presented the latest research on COVID-19 that is relevant for our community. Dr. Marcella Nunez-Smith,of Yale, who is Senior Advisor to the White House COVID Response Team and mom to a young daughter with Marfan, also provided her perspective. As always, please refer to the latest CDC guidelines and the COVID-10 guidelines in your local area.
THE STONE FAMILY p Brothers Steve, Mike, Mark, John, Dave (Buck) – Goofing around at a family wedding. Four of the five tested positive for Loeys-Dietz syndrome.
The Stone family story is about unanswered questions and perseverance. It affects multiple generations, visits to many medical professionals, and spans decades. Through it all, the Stone family story is one of awareness.
AORTIC DISSECTION IN THE FAMILY In 2009, the Stone family lost a second family member to aortic dissection. The first loss had been nearly forty years prior. “Several of us are tall and lanky and flexible, with some eye problems and scoliosis mixed in,” said Steve Stone, who was diagnosed with Loeys-Dietz syndrome in 2019, the first among 21 Stone family members to eventually get this diagnosis. With these characteristics and the family history of aortic dissection, “we were all looking at Marfan.” But those tested were negative for Marfan syndrome and had aortic measurements that fell within the normal range for the general population, so the questions remained. Then, in early 2019, Steve’s brother died. The cause again was aortic dissection. Six weeks later, Steve found himself in the emergency room for a suspected stroke, which turned out to be a carotid artery dissection. IF NOT MARFAN, THEN WHAT? “When that happened, it became a lot more critical to figure out what was going on,” Steve recalled. He started collecting every piece of medical information he could get from his siblings and cousins. Across dozens of relatives, Steve encountered detached retinas, aortas measuring over 5 cm, cases of scoliosis, and a mix of other useful details. He collected family autopsy reports, with the idea of presenting everything to his doctors. Steve visited his primary care physician and then a local thoracic surgeon; both attempted to assure him that everything was normal. But to Steve, it was clear
p Steve giving instructions for an annual family “Survivor” weekend with over 40 adults and kids competing.
that something was not at all normal. “They told me to ‘go live your life and come see me again in six months.’ I did not like that answer,” Steve said. Armed with files upon files of family medical information and the knowledge that Marfan syndrome was not the answer to his question, he asked a family friend and cardiovascular surgeon to review his case. This is where Steve’s perseverance paid off for him and his family. “[The surgeon] told me, ‘You don’t have Marfan. I’ve got an old colleague. I’d like you to go talk to him.’ And that is how I met Dr. Braverman,” recalled Steve. Dr. Alan Braverman is the director of th Marfan Syndrome Clinic and Center for Thoracic Aortic Disease at Washington University School of Medicine and Barnes-Jewish Hospital in St. Louis. He is also on The Marfan Foundation's Professional Advisory Board. In December of 2019, after meeting with Dr. Braverman and Dr. Willing, genetic counselor, Steve decided to undergo genetic testing. Steve was ready to sign up for whatever it would take to get an accurate diagnosis. “It was great to find somebody who was willing to figure it out. I was excited about having an answer, but nervous about what that answer would be and mean,” said Steve. A NEW ERA OF AWARENESS When genetic testing results came back, Steve received a call from Dr. Braverman with the answer to the Stone family’s 10-year- old questions: It was Loeys-Dietz syndrome. “That’s when it was real. Everybody in the family needed to be tested – all my brothers and sisters, my dad's brothers and sisters, and their kids," said Steve. "I posted a message in our family Facebook group on February 20, 2020, telling everyone what I had and how the genetic testing worked.” Finally armed with a confirmed diagnosis, Steve dove into understanding the condition and what it meant for him, and an increasing number of his family members. Across the generations before and after Steve, there were 100 people who could also potentially be affected. Though it took many medical professionals and a couple of decades, the confirmed diagnosis, along with the information available to them about Loeys-Dietz, will undoubtedly save the lives of generations of their family to come. “Now we can probably look back and see the signs more clearly, but for so long there just didn’t seem to be enough pieces to put the puzzle together,” said Steve. Altogether, 22 Stone family members have either passed from aortic dissections (likely related to Loeys-Dietz syndrome) or have been diagnosed with LDS, with more family members yet to undergo genetic testing. Awareness is the start that the Stone family needed to live with the knowledge of their limitations. “It’s changed our mindsets and how we live in some ways, but it’s a relief to know,” said Steve. It took losses and time, but what was once a story of unanswered questions has transformed, through perseverance, into an incredible story of Loeys-Dietz syndrome awareness.
June is Loeys-Dietz Awareness Month and we are ready to celebrate! Grab freebies, order swag, and register for all the free activities at LoeysDietz. org/ldsmonth. Highlights CONNECT June 16 - Caregivers Chat @ 7 pm Eastern June 19 – Paint Parties (register by 6/12) @ 2 & 4 pm Eastern June 22 – Happy Hour Chat @ 7 pm Eastern June 27 – Virtual Scavenger Hunt (register by 6/25) @ 5 pm Eastern June 29 – Young Adult Chat @ 7 pm Eastern LEARN June 15 – Making Meaning of Grief: Personal Perspectives Webinar @ 7 pm Eastern SUPPORT June 3 – (Un)Corked Culinary Edition with Dr. Hal Dietz and Gretchen
MacCarrick, MS CGC June 9 – Loeys-Dietz Awareness Day of Giving
Connect with us on social to get all the latest details for Loeys-Dietz Awareness Month.
BENNETT STILL ENJOYING LIFE IN HIS 70S
Bennett’s story begins with a physical that occurred during elementary school in Baltimore in the 1950s. At the time, it was common for there to be on-site physicians in schools and the doctor at Bennett’s school recognized that something was different about him. As luck would have it, they were referred to Dr. Victor McKusick at Johns Hopkins, who unbeknownst to any of them, would later become known as the Father of Medical Genetics, and a pioneer in Marfan syndrome research and patient care. Dr. McKusick noticed that Bennett had some outward features that indicated he had Marfan syn- drome. The diagnosis was confirmed, but Bennett carried on with his life doing the things he loved the most. It was 1954, so very little was known or avail- able to treat or prevent the complications of Marfan. “I played basketball, baseball, and did some weightlifting…probably all the things I shouldn’t have been doing,” Bennett says now, with a chuckle from his home in South Florida. Aside from when his doctors recognized a lens issue with Bennett’s eyes, there were no other noticeable hindrances to his day- to-day life. However, in October of 1984, on a hiking trip with his wife to Yosemite National Park, Bennett became aware that something was not right. He alerted his wife and wondered what could be wrong as he had shortnesss of breath, though he had climbed similar mountains without issue before. He asked her if she also felt short of breath. She didn’t. They moved on with their trip, but the shortness of breath stayed.
It was not until he was back home that he learned something was wrong, really wrong. Bennett’s doctor sent him for imaging, which showed his aorta had enlarged to 7.5 cm. When he heard this news, his first call was to his childhood doctor, Dr. McKusick, who remembered him very clearly and told him to get on the next plane to Baltimore. Dr. McKusick and Dr. Reid Pyeritz met Bennett at the hospital the next day. Imaging at Hop- kins found that the situation was even more alarming. Bennett’s aorta was not 7.5 cm, it was 10.5 cm. Incredibly, Bennett benefited from the skills of yet another expert in the field. This time, it was Dr. Vincent Gott, a pioneer in aortic surgery for people with Marfan syndrome. The procedure went well and Bennett returned home and took a few months off until he was back to his optimal health. Now in his 70s, Bennett knows his limitations, but he does not let them restrain him excessively. To this day, 37 years later, he exercises five days a week, maintains a healthy diet, and sees his doctors on a regular basis. He’s a firm believer in a “glass half full” attitude, a perspective he passed to his son and grandson who also live their lives fully, despite having inherited Marfan syndrome. Working with these pioneering doctors gave Bennett the chance to receive the best quality care when Marfan was only just beginning to be understood. His family recognizes the importance of seeking out the best in the field, which led to Bennett’s son and grandson being proactive in their own treatment. Today, they all benefit from all the information that is now available to those with Marfan syndrome. What started with two chance encounters with three of Marfan’s greatest experts has resulted in full and happy lives for Bennett and his family.
THE MARFAN FOUNDATION HEARTWORKS
HeartWorks St. Louis was the first event the Foundation had to cancel in March 2020 at the beginning of the pandemic. One year later, HeartWorks St. Louis went virtual and became our most successful online fundraiser to date. Under the leadership of Dr. Alan and Rebecca Braverman, HeartWorks St. Louis raised nearly $340,000 for the Foundation’s programs and services. SHINES ONLINE
More than 100 people attended the online event on March 13 and were treated to an incredible program featuring a tribute to our 2021 Hero with a Heart recipient, Dr. Michael Nelson; the amazing story of the Bobbe family, of Kansas City, and their young son, Elliott, who has Marfan syndrome; and several songs performed by Julius Thomas III, who is in the Broadway blockbuster, Hamilton. Special thanks to the Centene Corporation, as well as our other supporters, for the success of this event. Upcoming Events ▸ June 3: Uncorked: Culinary Edition (Virtual) ▸ June 10: HeartWorks Nashville ▸ June 24: HeartWorks NYC (Virtual) ▸ June 26: HeartWorks Houston Details for all are at Marfan.org/get-involved/events.
"IT IS PART OF ME AND I HAVE ACCEPTED IT"
From the time I was five years old, my doctor closely examined my fingers and toes every year during my check-up. When I turned twelve, my doctor asked my parents, ‘Have you ever heard of Marfan Syndrome?’
By Solomon Welfare My parents had not and that began my journey into learning about this rare genetic condition that affects my body’s connective tissue. My doctor advised my parents to make an appointment with a Marfan specialist at the Sibley Heart Center as soon as possible, so I knew it was something serious. By the time I was diagnosed, it was pretty clear that my height would always be off the charts, so I got used to people making comments about how tall I was. As I got older, my pectus carinatum (pro- truding chest) became more pronounced. At first, I would always wear a swim shirt in the pool, but now I don’t care if people see it because it is a part of me and I have accepted it. With my Marfan diagnosis, I became more aware of my heart and the way it would sometimes beat really fast, but that just told me to slow down. Once I started high school and my doctor, Dr. Glen Iannucci, of Sibley Heart Center in Atlanta, gave the okay for me to be in marching band, I knew that I had found something that would not be impacted by Marfan and I had a blast doing it. My Mom is one of the many people with Marfan syndrome who did not know they have it. She was diagnosed after I was, but she said that it explained all her strange medical conditions. We both suffer from back spasms and leg pains, so it is great that she knows how to treat each ailment. Once, we
competed for the heating pad when both of us had back pain…I think she won that one, but we are in this together and it is nice to have someone who understands your medical issues. Last year I had an MRI and an MRA for the first time, to allow Dr. Iannucci to take a close look at my aorta. These images told my doctor, who then told my parents, that my aorta size had not grown and that was wonderful news to hear. I remember leaving that cold dim room, and thinking to myself, how many times had that machine taken an image of someone's body or someone's organ, and the news had not been good? After thanking the MRI technician, I walked out of that large room feeling happy and hopeful for my heart health. It may be scary when you are first diagnosed, but modern medicine has made so many advancements for us to live long and healthy lives. Not everyone will understand what you need to do for your health, but take the time to share knowledge with them. There may be a time that you need to communicate your physical limitations, whether you are at school or in other places, so be prepared to be your own advocate. Thankfully, my Mom and I have each other and we make a great team! Solomon Welfare, 18, was diagnosed with Marfan syndrome at age 12. Today he is a 2021 graduating senior at Wheeler High School in Marietta, Georgia.
By Katie Wright, Director, The VEDS Movement
We are excited for what the future brings as we enter our second year as a division of The Marfan Foundation. We had a great start to the year! In January, Thrive Global published a community story about Morgan Jozwiak and her son Cameron, and Morgan’s mission of raising awareness, educating professionals, and raising funds for research. Morgan’s story is truly one of creating hope for the future. In February, we published informational packets for the school nurse and teacher, designed to assist in creating an emergency plan and educating the school about VEDS. These packets are available free on our website, in our Parent Toolkit. Then in March, we hosted a webinar with Dr. Peter Byers about creating a care team for VEDS, and joined the Foundation in launching the new Kids Club, a place for kids with Marfan, VEDS, and LDS ages 9-12 to get together once a month and have fun. Andrea Friedman, MSW, and Ashley Rose Marisch, a member of our VEDS community, host this group.
p Morgan Jozwiak and her son Cameron
On April 9, we then joined the DEFY Foundation in hosting the virtual DEFY VEDS Scientific Meeting, encouraging collaboration and discussion about research in VEDS. More than 100 researchers and medical professionals from all around the world registered for this meeting. This was truly an inspirational turnout. Soon after, we hosted a webinar for the community that featured a research update from this meeting. Finally, we published a fact sheet on VEDS for the emergency department on our home page, and we continue to explore additional ways to increase awareness and improve outcomes in emergency care for people with VEDS. You can continue to prepare for emergencies by using our Emergency Preparedness Kit, which is available on our website as well. We look forward to the Foundation’s virtual Annual Conference, July 8-11, and hope to see many members of our community there. Thank you everyone for your continued support of The VEDS Movement and our mission to charge forward and save lives.
4 th Scientific Meeting on Vascular Ehlers-Danlos Syndrome SAVE-THE-DATE Virtual Meeting: Friday, April 9, 2021 00am – 4:00pm Eastern CTS: Submission Deadline – February 19 10: ALL FOR ABSTRA undation along with m T , 2021 eeting Co-Chairs Peter Byers MD, Hal Dietz MD, Xavier Jeunemaitre n partnership with The Marfan Foundation and The VEDS Movement cientific Meeting on Vascular Ehlers-Danlos syndrome. The one-day y, April 9, 2021 from 10:00am – 4:00pm Eastern. Full program and ony Yasick MD, and i articipate in the 4 th S g will be held on Frida
n III pro- dequate ues.
VEDS Emergency Information for Emergency Department quate collagen III in an affected individual. Collage issues in the body. Because of this ina nd ruptures of these tiss ax
▸ Pneumothorax/hemothor Carotid cavernous sinus fi
netic connective tissue condition that results in inade ral support to the arteries, hollow organs, skin, lungs, and other t individuals with VEDS are prone to life-threatening spontaneous perforations a genc the following emergencies are considered: ssec t t
VEDS is a ge vides structu collagen III,
In an emer ▸ Aortic di ▸ Arterial artery i
disse n the
of th raphy er non ent to nforma bers of
Because arteriog Consid suffici This i mem
I M. CON o Clini c, N BOWE yo Clin ic LAN C. BR ashing to ADAM BIT Zucker Sc Hofstr a/N PETER H. Univer sit , T
HEID May JUA Ma A W
DUKE CA Massac h JOSEPH Baylor C St. Luk e JESSIC New Y
Weill C RICHA New Weill HAL
p Team Thomas Family at the 2019 Walk for Victory.
WALK FOR VICTORY Samantha Thomas was diagnosed with Marfan syndrome, at the age of 5, shortly after the family moved to Indiana. Until then, her pediatrician had noted her height, long arms, fingers, legs, and feet, but felt she was just tall for her age. As luck would have it, they had moved right into the backyard of a new Marfan clinic in Indianapolis. Jessica, Samantha’s mother, joined the local Indiana Marfan community, and met Dr. Ben Landis at a Family, in support of The Marfan Foundation. Samantha was recognized as a top fundraiser and for her work building awareness for aortic conditions. The Walk for Victory gives the community a way to join together to spread awareness and build support for a bright future. “I loved being with the group just walking and feeling the sense of connection with everyone there. We shared stories and laughed and cried together. It was an amazing day,” said Jessica.
meeting where he was a guest speaker. Shortly after, the Thomas family began seeing Dr. Landis at the Marfan clinic at Riley Children’s Health, where “they are able to treat Samantha entirely, not just for her heart condition,” said Jessica. “It’s a great feeling to be in the hands of so many great doctors at one time.” Dr. Landis and his colleagues feel the same way. They have advanced their Marfan research and expanded the care of people with Marfan and related conditions with an eye on creating a one-stop clinic for individuals who would otherwise need to see multiple specialists in multiple locations. It’s a community of care. And a community, medical or personal, can be transformative for individuals and families living with Marfan syndrome. Indiana has both now, as evidenced by the parallel growth of the Indiana Walk for Victory. In 2019, Samantha’s family created Team Thomas
This year, Riley Children’s has joined the Indiana Walk for Victory alongside teams like Team Thomas Family. “It’s inspiring to see how much we can do with the support of our partners, like Riley Children’s Health and families like the Thomases,” said Kim Huddleston, Marfan Foundation SVP of Development. With strong and growing medical expertise and an engaged group of volunteers, Indiana has a supportive place for kids like Samantha to grow up with Marfan. “I hope that the Marfan clinic continues to grow as does the community involved in the Walk for Victory,” said Jessica. “Both give us resources and support, and most importantly, they provide opportunities to create connections with others who are experiencing the highs and lows of living with a genetic condition like Marfan syndrome.”
HISTORIC International Federation of Marfan Syndrome Organizations , co-founding organization in 1992 International Research Symposium on Marfan and Related Conditions, organizing committee for all 10 symposiums held to date in Europe and the US We supported the first major clinical trial on Marfan that included a study site in Belgium that and recruited many international patients Spanish language materials developed in 2013, used in Spanish language countries all over the world 2021 AND THE FUTURE Launching fact sheets in three additional languages: Italian, French, German Launching new website , translatable into 11 languages Canada Walk for Victory (virtual) set for 2020 Global Walk for Victory (virtual) set for 2020 International Research Symposium on Marfan and Related Conditions is planned for 2022 in Europe GenTAC Aortic Summit is planned for 2022 in Europe DEFY Foundation 5 th Scientific Meeting for 2022 in Europe
2019-2020 International E 3 Summit: Educating, Empowering, and Enriching our Community, August-September 2020, featuring 70 presentations in 7 languages, with 3,000 attendees from 75 countries Aortic Disease Awareness Day/Week , lead since 2019 Global Walk for Victory, May 2020, with teams from 8 countries International Patient Organization Meeting in Amsterdam, organizer in 2019 GenTAC Aortic Summit 2020 , international scientific meeting attracted more than 250 registrants from 25 countries First Board Advisor from outside the US (Timo Söderlund, Sweden)
PAST, CURRENT, ONGOING
Our Help & Resource Center regularly fields inquiries from more than 40 countries around the world – from Albania and Algeria to Uzbekistan and Venezuela Our Research Grant program, which has given awards to 15 scientists and clinicians outside the US, continues to provide funding opportunities to advance discovery around the world We are conducting a long-term valve-sparing durability research study with several international sites Our social media platforms connect people from all over the world (45 countries)
The Marfan Foundation | Marfan.org
p (L-R) Steve and Hunter Beckholt with Aven McBride at the 2019 Houston Walk for Victory.
A HEART OF GOLD IN HOUSTON
Aven McBride is an incredible business owner and, more than that, an incredible human being. The principal in American Communications Construction (ACC) in Houston, Aven is known to go above and beyond for his employees and his generosity at holiday time is legendary. Clearly, this bear of a man has a heart of gold. No one knows that better than Steve Beckholt, of Tomball, TX, who works at ACC. Steve’s son, Hunter, now 16, was diagnosed with Marfan syndrome at the age of 3, and Aven is committed to doing whatever he can to support Hunter and other kids like him who rely on the information and support provided by The Marfan Foundation. An annual sponsor of the Houston Walk for Victory, Aven got an even closer view of the Foundation’s
impact when the Annual Conference was held in Houston in 2019. It touched his heart in such a way that he felt compelled to increase his support of the Foundation. “I don’t have time to give to help the Foundation with its outreach, but I do have financial resources,” said Aven. “I’ve watched Hunter Beckholt struggle with Marfan and overcome so many medical hardships. If there’s any chance that my financial resources will help Hunter and other families, I am more than happy to contribute in a big way to the Foundation’s important work.” To discuss ways that your major gift can make the greatest impact, please contact Helaine Baruch, chief philanthropy officer, firstname.lastname@example.org.
WE REMEMBER AND HONOR We are grateful to our members and friends who have made contributions in memory of, or in honor of, the following individuals between December 16, 2020 and March 31, 2021. These donations are fully appreciated and 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.
Sam Howell Gail Jehan Cassie, Ezra & Alex Jennings Morgan Jozwiak The Jung Family Caryn Kauffman Kayla Kay Melissa Keller William & Linda Kelly Shelly Klabe Dawn Knowles Kelly Kopish Dr. Nicholas Kouchoukos The Kozel Family Emily Kramer Nicole Kramer Rebecca and Sarah Kryger Hanna Lee
Mazzy Sass Scott Schober Liesl Sparnroft
Edward James Davis Robert Davis Rita Dean John DeBlecourt
Margaret McCabe Kristl Scout McCauley Troy McDaniel
Donations In Honor Of Her Grandson Taylor
Daniel Louis Speck Christopher Stuart Ethan Stulgis David Style Nicholas Sumberaz Cameron Sweeting Sacramento Tall Club Kayley Tigges Maggie Tucker Halle Tunheim David Veeder Sonja Vogel Monique Voorn Ida Wakat Hillary Wallace Diane & Joe Walsh
Shirley Mc Intosh Tomothy Meagher Kimberly Merkel
Paul Deyden J. Doehring
Huxley Ava H. Mike Adolf
Angelina Dolge Clifton Durand Steven Durrett Hilary Clark Theodore James Edwards Andy Elam Michael Enbar Ryan Ersick Danielle Escarcega
Connor Metz James Miller Huck Moore
Denise Albert Jennifer Alden Cam Allen Athena Ambrecht
Patricia Moran Andrew Morrell Shannon Murphy Angelo Nania Paula Neil Joseph Neustadt Casey Nilles Cathleen Nilles Michael O'Brien Mark Oesterlin
Micah & Connor Amdur-Clark Reegan Bennett Armstrong
Leo Azarrafa Elliott Bobbe Joe Bailey, jr. Nora Baker Brad and Allyson Baker Helaine Baruch Lauren Bates Taurin Bear Kenny Beauchamp
William Feinstein Richard Flannery Tom Frenz Raymond J. Frenz Bryan Funk Andrea Rose Garcia Ravi Garg Lizzie Gasser Bruce Gold Charles Golden Milton Golden Jonah Goodman Stephanie Green Andrew Gross Gabriela Guapatin Sidney Gussow Sara Hackney Howard Harlow Connor Harris Christopher Hassell Fred Hearn Richard D. Heim Jean Hesse Orion Holder Luke Hosking Anthony Howard Frank Howell Scott Hunefeld Eileen Ilberman James Michael Ireton Allyson Jane Ann Jarosz Steve Jerkins Michael Jordan Jerrod Jung Fernande Kaam Mary Clare Kauffman Ken Kelly Evelyne Kelly
Shoshana Leeder Matthew Lenhart Robyn Li Dr. David Liang Joshua Lowery
Ben Weisman Emily Wheeler Luke Wiggins Connor Wilson
Devra Olano John Olson Edward Page
Alice Paramore Richard Patka Christopher Paulsen John Perna
Jan Lynch Lulu Maher Barbara & Harold Makanoff
Anna Witiuk Katie Wright Marsha & Dennis Yaschik Cynthia Zarate Anne Zimmermann Donations In Memory Of Uncle Bobby Victoria G Carol, Adrian and Elias Adame Joe Ashworth Emersyn Aurich Werneth Avril Dylan Baker William Banse Joshua Barber Victoria Barillas Michael J Bartelt Lauren Christine Bates Naddy Matthew Baumgartner James Belanger Jeffrey Berkowitz Jeff Berkowitz
Buddy Benge Janet Bennet
Scott Bergkamp Priscilla Bostock Dr. Alan & Rebecca Braverman
Gavin Marcus Isabelle Marin Grant Martin
Sharon Peterson Marie Petrosillo
April Pokorny Vicky Prager Emily Rauschenbach Sarai Reece Ann Reinking Tom Reis
Beth Brobst Rick Brown Thomas Brown Kara Burke
Eileen Masciale Peyton Mathews Karen Maxwell Taborski McClellan Ervin McKinnon Lisa Meyers Amelia Meyers Bailey Milburn Catherine Miller Dr. D. Craig Miller
Mary Bushart Kathy Butvick John Cardillo ll Hannah Cechova Leo Cole Alex Cornejo Christian D'Angelo Vickie Dalton Darby Davenport Janet David Crisanna De Luna Roberta, and Ally Levesque, and De Melo
Regan Remulla Jonathan Reyes Janet, Daniel, Shirley and Andrew Rigney Jeannie Rizzuto Maryann Roney Julie Roos Bertha Rowland Gabrielle Cannistraci Joann Saccone J. Evan Sadler Jacob Schneiderman Terry Schultz Spencer Sellas Michael Shaw Fulton Sheehan & Stancie Amon Emily Shipman Mark Silver Casey Sprouse Charles Stapleton Paula Jean Summerall Tyler Sunderland Tommy Tant Greyson Templeton Matt James Stanton Thompson Larry Tucker Wayne Van Linden Rosy Wakat Twig and D'ree Wegmann Marianne Wendroff Averie Williams Dr. David L. Williams Averie Williams Denise Winter Brandon Wolfe Jeffrey Wurst Stephen R & Stephen G Yakimovich David Zimmerman
Macon Mitchell Madeline Moore Scott & Sharon Moore, Benny & Rene Piazza, Bob Spearman, and Gene & Susan Wilkerson Hudson Morris Jordan Nailor Peyton Nealey Dr. D. Michael Nelson Heidi Nelson & Kelly Purcell Bloom Josh Newnam Torsten Nordstrom Carole Nowak Ryan O'Sullivan Christian Obregon Lee Parsons The Paul Family Daniel Peters Pamela Peterson Cullen Petrella Daniel Petric Cameron Ponton Victoria Pope Justin Price
James Dickey Heather Dixon Marla Doehring Haley Dostalik Callie Efurd Jay and Bobby Elliott Lucas Escarcega Mary & Billy Essers Jessica Fagg-Banfield Annie Finley Carson Flanagan William Henry Floyd IV Stacy Fortier
Dr. Charles A. Berst Mary Carol Bollati Warren Lee Bonner Carol Virginia Brady
Amy Breidenbach Michael E. Brennan Jeanna Nicole Brown Ayers Jennifer Buffone Adam Burchett George Butler & Jerry Butler
Marcia Kile Mark Klein Carmela Kolman Yuen Kuen Au
Julie Kurnitz Gene Kutner
Bobby Fortney Laurel Giacone Judy Gibaldi Skyler Glassford Owen Gray Scott Griebel Jack Guglielmo Hadley Gunn Creasie Hairston Stella Hall
Brian Campbell Irma Capaccio Salvatore Capaccio Donald Carney Laura Marie Cathcart Sarah Cayo Brooke Chapman Aileen Cheng Kylie Christensen
Andrea Laccabue Brian Laughman Alexa Lawrence
Lexi Lawrence Milan Lazorcik April Leaman Ron LeHew John Lewis James Ludwig
Nicole Reiner Jeff Reinking Rachel Ricca James Richardson Ayden RIggs Lisa & Danielle Ritell Tyler Roberts Ken & Katie Robins Charles Patrick Rogers
Bonnie Clarke Nancy Conger Ruth Cooper, Gail Watson, Stacy Burks Callie Marie Cornely
Jordan Hannan Henkel Family Rocco Hermogenes Nathan, Lily, Noah Hesson
Richard Makanoff Donald Manderfeld Richard Marcus Allyson Jane Marisch George Maurer Garry May
Willa Hilton Walker Beckett Hotchkiss Brian Howell
Blaise Dafoe Twyla Davis Robin Davis
Brooke Ruth Noa Russell
22 MANHASSET AVENUE PORT WASHINGTON, NY 11050
The best way to stay up-to-date with new virtual events and programs is by connecting with us on your favorite social media channel.
The Marfan Foundation Facebook: @themarfanfoundation Instagram: @themarfanfoundation Twitter: @MarfanFdn
Loeys-Dietz Syndrome Foundation Facebook: @loeysdietz Instagram: @loeysdietz Twitter: @LDSFoundation
The VEDS Movement Facebook: @VEDSMovement Twitter: @VEDSMovement
Made with FlippingBook - Online magazine maker