Connective Issues - Summer 2020
While the world is on pause, we continue to serve.
COVID-19 RESOURCES FOR YOU
FIRST E 3 SUMMIT COMING THIS SUMMER
WHAT’S LIFE BEEN LIKE DURING QUARANTINE?
“The best way to predict the future is to create it!” - Peter Drucker AN EXCITING TIME IN THE LIFE OF THE FOUNDATION
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 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.
As we embark on our 40 th year, it is truly like no other time in the history of The Marfan Foundation. Although there are many unknowns, just like there were 40 years ago, the Foundation is well positioned to reimagine its future and be stronger than ever before. In the last 12 months, we have created the Vascular EDS Division, powered Aortic Disease Awareness Day, expanded to serve Stickler syndrome and, on July 1, the Loeys Dietz
Syndrome Foundation joins our Foundation. Yes, we are better organized and energized than ever to serve individuals with Marfan syndrome and related conditions. While all this has been happening, we battled COVID-19 with every resource available from the Foundation. Our Professional Advisory Board and extended medical community shined in every way imaginable, our Help & Resource Center was there to meet everyone’s immediate needs, and we stayed focused on keeping our community informed and protected. I am extraordinarily proud of the combined efforts of our volunteers and staff and will be forever grateful to our medical community. They are at the very core of every success we enjoy! While we are all extremely disappointed about the inability to hold our Annual Conference this summer, in this issue you will read about the International E 3 Summit, the largest educational undertaking in the history of the Foundation. And, for sure, we will see you next year in Chicago for our Annual Conference. This is really a great time to be involved with the Foundation. And, we will only become stronger as we embark on the better days ahead. Stay well, stay safe, and rest assured we are with you every step of the way. It is our time!
Learn more and get involved at Marfan.org.
CONNECTIVE ISSUES SUMMER 2020 VOLUME 39 | 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 Weamer President & CEO
THE MARFAN FOUNDATION 22 MANHASSET AVENUE PORT WASHINGTON, NY 11050 516-883-8712 | 800-8-MARFAN MARFAN.ORG
ON THE COVER: Global Walk for Victory participants celebrating $21,000 raised in this inaugural walk on May 5, 2020.
WALKING WHEN WE CAN’T WALK
The Inaugural Global Walk for Victory had been set for Saturday, May 2, long before COVID-19 entered into the equation. The original goal was to give people all over the world a way to Walk for Victory together, no matter their zip code. It turned out we needed the Global Walk for Victory more than anticipated when nobody could gather to walk with community anywhere! Not even social distancing and a global pandemic could stop this incredible community. The Walk’s 42 teams participated from around the globe, including England, France, Germany, Canada, Costa Rica, and South Africa, and raised $21,000. Team members celebrated the success of the first Global Walk for Victory by partying online with DJ Willy Wow. Nearly 75 families gathered online for an afternoon of fun, featuring a spirit content, scavenger hunt, and more with DJ Willy Wow.
p Many thanks to the University of Kentucky Team, led by Mary B. Sheppard, MD!
GLOBAL WALK TEAMS
TEAM FLANAGAN South Carolina
Amy was a member of the largest Walk for Victory in the country in Houston, but wanted to find a way to stay close to the Foundation when her family moved
TEAM KROEKER Ontario, Canada
to South Carolina. “Since moving to South Carolina, where there is no local Walk for Victory, the Global Walk for Victory gave us the opportunity to raise awareness and money for a condition that affects our son and others to ensure that they get the treatment needed to live their lives to the fullest.”
“We raised money for The Marfan Foundation because I discovered a few years ago that I have Loeys-Dietz syndrome. It was an amazing journey of discovery and I couldn't have made it without the incredible support of the Loeys-Dietz Syndrome Foundation. I wanted to support LDSF and The Marfan Foundation in any way that I could. So, I created Team Kroeker to help support this great cause!”
TEAM FIONA Alaska Fiona’s Virtual Walk for Victory Team is led by Fiona's mom, Kate McCray. This military family moved around
TEAM MONIQUE VOORN Ontario, Canada “Marfan syndrome has claimed the lives of many of
my family members and I just wish they were alive now to benefit from all of the progress that has been made in terms of treatment. So much of this progress is in thanks to The Marfan Foundation.”
for many years and were stationed in Alaska when Fiona was given a Marfan diagnosis. The Global Walk was a way for this military family to feel at home even while on the move.
The Marfan Foundation wants to extend a very special thank you to the members of our Professional Advisory Board who stepped up during an unprecedented public health crisis to take care of the needs of the Marfan and related conditions community. “Several members of the PAB were extremely helpful in creating statements for our community about how the virus might specifically impact them, special care they may need, and recommendations related to resuming in-person medical care,” said Josephine Grima, PhD, the Foundation’s chief science officer. The Foundation is especially grateful to Dr. Hal Dietz and Dr. Enid Neptune, of Johns Hopkins, Dr. Juan Bowen, of Mayo Clinic, and Dr. Shaine Morris, of Texas Children’s Hospital, who volunteered their time and expertise to provide guidance and answer questions during live webinars offered by the Foundation in March and April. Nearly 2,000 people registered for these webinars and our follow-up survey showed that registrants were nearly unanimously grateful for the timely information from such well-respected experts. The Foundation will continue to provide updates related to coronavirus treatment for people with Marfan, Loeys-Dietz, VEDS, and other genetic conditions as new information becomes available. Without studies about how coronavirus and its treatment specifically impacts those in our community, members of our Professional Advisory Board gave their best guidance based on their expert medical knowledge and will continue to offer advice as they learn about the coronavirus and how it might affect our conditions. PAB STEPS UP FOR CORONAVIRUS RESPONSE
u Top to bottom: Dr. Hal Dietz, Dr. Enid Neptune, Dr. Juan Bowen, and Dr. Shaine Morris
RESOURCES YOU NEED NOW
COVID-19 Resources When COVID-19 brought increased uncertainty to the Marfan and related conditions community, the Foundation’s Professional Advisory Board members stepped up to answer important questions and clarify the virus’ risk to our community. A compilation of all the Foundation’s COVID-19 resources can be found at Marfan.org/Covid19 . You will find links to medical statements related to coronavirus and how it impacts our community, medical webinars given by members of the Professional Advisory Board that answer the community’s questions, details about changes to the Foundation’s programs, and several Spanish language resources. We will continue to provide resources about the current public health crisis as it related to Marfan and related conditions based on your needs.
The level of expertise represented coupled with the tight community bond fostered by the Foundation is so powerful and appreciated these days. Thank you!
Virtual Medical Symposium Webinars No matter the current landscape, we want you to have access to the best medical information about Marfan, VEDS, Loeys-Dietz, and other genetic aortic conditions. Through our Virtual Medical Symposium Webinar series, you can access a range of relevant and important topics on genetic aortic conditions, presented by leading medical experts. Recent topics include Pregnancy and Marfan Syndrome, Eye Issues and Treatment, and Dental Concerns. View these and other topics anytime at Marfan.org/MedicalWebinars .
I am grateful for this specialized information. I so appreciated the extra time that was taken to answer my question via email. It's a real comfort to have access to this knowledge.
Virtual Support Groups We’ve all gotten pretty creative the past months when it comes to making connections with other people. Remote classrooms, online games, and virtual hangouts are part of daily life now. Did you know that you can take those virtual meeting skills and use them to connect with members of the Marfan and related conditions community? We offer five virtual support groups each month where you can join the conversation or just listen to others with experiences similar to yours. Additionally, we offer groups specifically for those affected by VEDS through The VEDS Movement division. Register for any virtual support group at Marfan.org/SupportGroups .
What you do is absolutely wonderful! The access you have to high quality experts is invaluable. We've learned so much from the webinars.
GUIDANCE ON WHEN AND HOW TO RESUME MEDICAL CARE
The Marfan Foundation, in collaboration with our Professional Advisory Board, continues to monitor the news regarding COVID-19 and wants to provide updated information for our community. Recently, the Centers for Medicare & Medicaid Services (CMS) outlined guidance about resuming in-person medical care. We want to pass on some of that guidance to our community about resuming in-person care because, for many, this is an area of much anxiety. At this time, many areas have a low, or relatively low, and stable incidence of COVID-19, and some facilities are beginning to provide care for patients needing non- emergent, non-COVID-19 healthcare as well as certain surgeries and procedures, chronic disease care, and, ultimately, preventive care. It is known that people continue to have ongoing healthcare needs that are currently being deferred. Here is guidance to determine if your area is ready to re-establish in-person management when necessary. Please remember that these guidelines are based on your local area and cannot be generalized. Maintain clear lines of communication with your medical team. This is a confusing time. Many people with complex chronic conditions that require management should discuss all options with their physicians and ask questions to ensure that you have the most up-to-date information. Stay in touch with your medical team even if you can’t meet them in person. It can be intimidating to decide when to seek medical care if you believe your health status
has changed. Many physicians are engaging in telehealth to stay in touch with patients. Anyone who requires a cardiac or vascular procedure should feel free to call your medical team to inquire about your changing status and how it affects your treatment. This is especially true for those who previously had no symptoms or mild symptoms, but now have increased symptoms since the COVID-19 outbreak. When trying to decide when is the appropriate time to resume in-person visits ask questions, such as: • Does your facility have non-COVID designated areas? Do people entering these areas get screened for symptoms? • What policies are in place for minimizing time in waiting areas? Are chairs spaced at least 6 feet apart and is there a limit to how many people can be in the waiting areas at the same time? • What is your facility’s social distancing policy for medical professionals? How will this affect my visit and/ or my stay in your facility? • What is your facility’s policy regarding elective surgeries? Have these policies changed in the past week? • What is your facility’s current capacity for surgical and pre-surgical patients? Do you anticipate this changing in the next week or two?
If you have a healthcare emergency (for example, chest pain or severe shortness of breath), call 911 and seek emergency medical care or visit your local hospital emer- gency room. The guidelines concerning elective medical procedures do not apply to medical emergencies. If you are experiencing a health emergency, it is important to seek medical care from your local emergency department. If you delay immediate medical care when it is needed, you may cause harm and impact your long-term health. If you are anticipating surgery, do not be surprised if certain minor treatment protocols change leading up to your preoperative assessment and/or surgery. As a result of COVID-19, many facilities have changed their protocols regarding how patients receive their preoperative assessment, any associated surgery, if needed, and any recovery. This may mean that other members of the medical team, such as nurse practitioners and physician assistants, take a more active role in your evaluation and care. These changes are designed to give you more complete medical care. Always communicate any questions or concerns you might have with your medical team concerning your care coordination. If you have any questions, please reach out to our Help & Resource Center. You can submit your questions at Marfan.org/Ask .
• Given my condition, what is a realistic timeline for me to receive proper treatment that will maximize my personal health outcomes? • Can a family member or care partner accompany me to my visit/procedure? • Can my procedure be done on an outpatient basis to limit my potential exposure to the coronavirus? • What information and resources are you sharing with your other patients that would be helpful for me right now? • Does your facility have an adequate supply of Personal Protective Equipment (PPE) for your staff? • How do state or local health department recommenda- tions affect the timing and nature of my care? If you have been deemed “urgent” or “emergent” for cardiac surgery by your medical team, do not wait to seek appropriate medical care. If your physician has determined that you urgently need surgery (for example, someone with severe degenerative mitral regurgitation), you should seek care at your healthcare facility as planned. Facilities have protocols in place to triage and treat patients to reduce risks from COVID-19. While these are uncertain times, your long-term health is of the utmost importance and care should not be delayed.
VIRTUAL CAMP VICTORY FOR KIDS JULY 27-31
Each Day Campers Can: u VIEW camp staff in a variety of
Virtual Camp Victory for Kids is an exclusive program for those with Marfan, Vascular Ehlers-Danlos (VEDS), Loeys- Dietz and related conditions, and the members of their families. This is the newest way to engage our camp community in fun camp activities, group discussions, and interactive LIVE programs for the entire family! Campers will get a week-long schedule that will allow them to choose when and how they want to engage in fun camp activities in their home environments. Camp groups will be divided based on age and each group will participate in their own special activities, plus, there will be times when all of Camp Victory will join together as one.
exciting activity videos where they will learn new skills, complete challenges, and have fun. u ENGAGE in three live activities – SPIRIT TIME, CABIN CHATS, and a family friendly EVENING PROGRAM. u POST to the camp feed to share their photos, their creations, and to tell stories of their adventures. Join with other campers and families on Monday, July 27, through Friday, July 31, to experience this new camp program Participation in this program is FREE to everyone.
Register at Marfan.org/camps Contact Susan Leshen at email@example.com or 800-8-MARFAN x122 for more information.
FIRST E 3 SUMMIT COMING THIS SUMMER Tuesday, August 25 – Saturday, September 12
As we look to the future, we know that your need for comprehensive, up-to-date medical and quality of life information continues. In fact, your questions may increase as the medical landscape changes. When it comes to dealing with Marfan, VEDS, Loeys-Dietz, and other genetic aortic conditions, you can continue to count on The Marfan Foundation. With this in mind, we asked ourselves what it would look like if we could create a virtual event that included the best experts in the world. The answer to that question is the E 3 Summit, powered by The Marfan Foundation and VASCERN, the European Reference Network. The E 3 International Summit: Educating, Empowering, and Enriching Our Community will take place Tuesday, August 25, through Saturday, September 12. Live online presentations and question and answer sessions with the world’s experts on Marfan, VEDS, Loeys- Dietz, and related conditions will be scheduled on weeknights and on two Saturdays.
In addition, mid-day presentations will be offered to accommodate other time zones, especially in Europe. To better meet the needs of people around the world, the Summit will include medical presentations in Spanish, Italian, French, and German. To complement the medical information, a selection of quality of life presentations will also be on the schedule. Opportunities for connecting with other people in the worldwide community will be available as well. What will you need to access this three-week summit? A device that can connect to the internet. That’s it! Everything from medical and quality of life presentations to live question and answer sessions with the experts and networking opportunities will be online. More information about specific programs will be coming soon, along with registration and scholarship details. This is a special opportunity to connect with medical experts and the genetic aortic community from around the world. Please mark your calendar now to join us for this incredible three-week event. Powered by The Marfan Foundation and VASCERN
AT HOME HEARTWORKS THE MARFAN FOUNDATION
HEARTWORKS AT HOME A SUCCESS The HeartWorks Gala had to move to our living rooms this year, but it was still a huge success! The event raised $115,000 to ensure continued research, resources, and support for the Marfan, VEDS, Loeys-Dietz, and related conditions community!
NEW PARTNERSHIP WITH LOEYS-DIETZ SYNDROME FOUNDATION In May, the Foundation announced that the Loeys-Dietz Syndrome Foundation will officially become a division of The Marfan Foundation on July 1, 2020. The Marfan Foundation has a rich history with the Loeys-Dietz syndrome community, as many people with Loeys- Dietz were initially diagnosed with Marfan. It was not until 2005 when Loeys-Dietz was first identified that many people were re-diagnosed. Over the years, The Marfan Foundation has provided programs and services, including presentations and workshops at the Annual Conference, to support the needs of those affected by Loeys-Dietz syndrome. Under this new collaborative relationship, these offerings will expand and there will be many new opportunities. As a division of The Marfan Foundation, the Loeys-Dietz Syndrome Foundation will continue to operate with the guidance of its existing Medical Advisory Board and will add the staff support of Angela Crist, the recently named division director. It will retain its logo and independent website, loeysdietz.org, and Facebook page. Staff from The Marfan Foundation will work with Crist and Loeys-Dietz Syndrome Foundation volunteers to expand opportunities in all mission areas – education, support, and research – as well as support fundraising.
With many members of our VEDS community spread apart across the globe, we are excited to begin offering a new program to help connect with others online. The new VEDS Friendly Connection program gives individuals of any age an opportunity to connect with another person who is on a similar journey with VEDS. Whether you have VEDS, or are a family member of an affected person, you can connect and participate regardless of your location. For a community that frequently experiences isolation, this is a great opportunity to connect with others one-on-one. Register for the VEDS Friendly Connection program at TheVEDSMovement.org and you will be contacted to connect you with someone else in the community.
t Bella Marin and Kristi Posival
WHAT’S LIFE BEEN LIKE DURING QUARANTINE?
What’s it like living through a once in a lifetime pandemic with a rare connective tissue condition? We knew this would create added stress for our community, which deals with medical issues regularly. But we also know the strength and resilience that runs through our community. We were curious about what you’ve been up to. Here are some of your responses: During quarantine, my husband and I started making weekly podcasts. So far we’ve recorded 5 episodes! My husband, Jeremiah, and our 8-month-old daughter, Sophia, have Marfan syndrome. Starting a podcast has been an amazing creative outlet that’s brought us closer together. It’s incredible to sit down and have a completely uninterrupted conversation. We had wanted to start a podcast to help build a community for ourselves since we moved to Georgia from Arkansas. I don’t think we would have started it if we hadn’t been in quarantine, but through it, we’ve recently make a new friend who also has Marfan and lives in our community. In our fourth episode, we talked about Marfan syndrome and how it affects our family. We shared it in a local Marfan community group. Someone from the group reached out and we met via Zoom. This was the first person with Marfan, outside of immediate family, who Jeremiah had ever met and he learned quite a bit about himself and his condition just from that one conversation. The podcast has definitely been a life line to keep us sane. I'm so thankful that we've been able to make new friends and build our own little community through it. I'm hopeful it will continue to grow! You can find A Place for Us on Spotify, Anchor, and soon on Apple. – Alyssa Elgen, Jeremiah Wren and Sophia Wren, Georgia, Marfan
p Jeremiah and Alyssa with their podcast setup and with daughter, Sophia (below).
My name is Rhayssa and I'm 26 years old. I have a diagnosis of Marfan syndrome and I live in Brazil. I am a psychologist and I work in a call center, but I am allowed to stay at home. I have used my time to study, play the guitar, pray, exercise, be with family. It is difficult, the whole change of routine, not being able to go out, work, see friends. But I know that it is necessary to stay at home, take care of myself and take care of who is with me! I believe that everything will pass, and it will be a new chance to start again, stronger and with more hope! – Rhayssa Morais, Brazil, Marfan
So back in February when everything was starting, I joked with my coworkers, “You guys know I’ll literally be the first person in the office to get coronavirus.” On April Fool’s Day, I had to call in sick. Who was going to take this serious? My doctor said I most likely had COVID but to just stay home, take Tylenol, drink as many fluids as possible, and rest. And under no circumstances leave the house! This continued a few days with my husband taking amazing care of me until one day I could feel the heat resonating off of him. He was now sick too. Neither of us said it out loud but we were scared. All in all, it was about a 19 day illness for me. This has absolutely changed the way I look at things and people! I hope everyone is wearing their mask and following social distancing because, if we can save one life or save one family, the stress of what we went through that would be amazing! – Janet Majewski, New York, Marfan
Living with a genetic aortic condition can take away your identity and make you feel like a shadow of your former self, especially during a pandemic when you are faced with yet again a situation beyond your control, forcing your life to an immediate halt. But remember that in order to cast a shadow, the sun must be at your back and you are looking toward what lies ahead. Together we move forward. Know you are not alone. – Bridgette Howe, New York, VEDS
A PROMISE TO MOM Lewis A. Merrill, Jr. was a quiet man. Never married, he lived in the same California home for 35 years. A retired engineer, an avid golfer, and a talented piano player, he was a man of few words, but a man whose word was his bond. As a younger man he made a promise to his mother that he would help those affected by Marfan syndrome. Lewis kept that promise when, upon his death in January, at the age of 91, he left a $25,000 bequest in his mother, Cecelia Ruth Merrill’s, honor to The Marfan Foundation. The gift will be used to support the work of the Foundations's Help & Resource Center and is a fitting tribute to a woman who raised such an honorable son. You can provide support for The Marfan Foundation through your estate plan. Please contact Megan Martin (MMartin@marfan.org), or visit MarfanLegacy.org for more information.
Did you know people who plan ahead typically leave more for family after they are gone? When you think about it, it makes perfect sense. People who plan have identified their goals. They have established priorities. In doing so, they give themselves something to strive for and they make decisions with their plan in mind. With recent changes to the tax code, this is the perfect time to put your plan together or to update your plan. FAMILY FIRST Does your plan match your priorities ?
Create a charitable legacy supporting the causes important to you while freeing assets for family.
With proper planning capital gains taxes can be reduced or eliminated.
The estate tax may be reduced or eliminated.
p Team top 10 at the South Florida Walk for Victory.
MEDIA CHAMPION IN MIAMI Media Champion in Miami
one report, like my interview with Bert, can save lives.” Garrett Langford, whose seven-year-old daughter, Haley, has Marfan syndrome, served as community co-chair of the 2020 South Florida Walk for Victory. He and Haley were featured in Local 10’s Marfan coverage this year. “We are very grateful to Local 10 for sharing our story. We hope that it compelled people to learn more about Marfan syndrome. Symptoms can easily be overlooked if there is a lack of awareness. The first time one hears of Marfan syndrome should not be when they are diagnosed,” said Garrett. “Haley loved being in front of the camera and was proud to share the piece with her friends and family. As a result, we have found that relatives and close friends have been willing to support our efforts in any way they can.” Supporting the South Florida Walk for Victory Local 10 anchor Nicole Perez, who has been the chair or honorary chair of the South Florida Walk for Victory since its inception, has also taken a special interest in the Foundation and our community. She is featured each year in a public service announcement that airs extensively on the station in advance of the Walk and champions our cause on her personal social media as well. It’s not uncommon to have the entire Perez family at our Walk for Victory.
Thanks to WPLG-TV, the ABC affiliate in Miami (known locally as Local 10), the bar has been raised significantly in Marfan awareness over the past several years. The entire Local 10 team, led by General Manager and President Bert Medina, who is on The Marfan Foundation Board of Directors, has taken a special interest in raising the profile of Marfan syndrome and related conditions in South Florida. High Profile News Coverage Even before Local 10 became the media sponsor for the South Florida Walk for Victory (which started in 2017), then medical reporter Kristi Krueger, who is now a Local 10 anchor, featured Marfan syndrome on the news several times. And each year, in the weeks leading up to the Walk, she has featured local families with Marfan as a way to help increase diagnosis and promote fundraising for the Walk. “I have been a medical reporter for more than 30 years and, during that time, have produced numerous stories about Marfan syndrome. Of course, the one that hit closest to home was my emotional feature report with my boss and President of WPLG-TV, Bert Medina. Bert almost died as a result of Marfan syndrome and is passionate about educating the public,” said Kristi. “It’s vital to enlighten our viewers about the signs of Marfan because so many people have this condition and don’t even know it. Just
there to capture footage for the evening news. “Our community relations team creates, executes, and oversees many outreach events throughout the year. The Marfan Foundation’s Walk for Victory is that unique, annual event in which our entire station gets involved,” said Mayte Padron, Local 10’s director of community relations. “From engineers and the business office to news reporters and our CEO, we look forward to the camaraderie and the collective excitement of coming together to support a wonderful cause.” No one is more proud of how the station champions Marfan syndrome and related conditions than Bert Medina. “Words cannot truly describe my emotions as I witness the turnout from the entire team at the South Florida Walk for Victory,” said Bert. “We have a very generous and giving group of human beings and I am humbled and honored by their participation and support. They are saving many lives in our community.” The Leadership of Bert Medina Bert’s involvement in the Foundation on both a national level and local level is exemplary. “Over the past few years, the Foundation has been extremely fortunate to have Bert increase his involvement. His personal connection with our mission runs deep, and is evidenced by his tireless support in raising awareness, supporting our development activities, and joining our Board of Directors,” said Cory Eaves, Board Chair. “By enlisting the support of the whole WPLG Local 10 station, Bert has also set the standard for building community support in Florida.” Stay up-to-date on Local 10 by downloading their app on your phone and following the station on social media. You can also follow Nicole Perez on Instagram, where she promotes the Foundation’s happenings in South Florida.
p Garrett Langford and his daughter, Haley, were interviewed by Local 10 in January 2020.
“I felt it was an absolute necessity to use my platform at Local 10 to help spread the word about Marfan syndrome,” said Nicole. “My commitment to the Marfan community has grown so much over the past few years. How can I not be committed to a community who truly shows up in life every single day? The Marfan community has opened my eyes to what leading a fulfilling life really means. The kindness and generosity you feel from everyone who works for the Foundation and from those who attend the Walk is so special to me. I promise to continue my commitment for many years to come.” In fact, rain or shine, the entire Local 10 team has a presence at the South Florida Walk for Victory each year. They walk, they raise money, and they have a great time with our community. And there’s always a camera crew
p Nicole Perez
p Local 10 Anchor Kristi Krueger (right) with the station’s chief meteorologist, Betty Davis, who also supports the South Florida Walk for Victory each year.
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, 2019, and April 30, 2020. These donations are fully appreciated and support our programs and services that create a brighter future for all those living with Marfan syndrome and related conditions. Donations to Walk for Victory are not included.
Y.C. Chen Gena Christ The Clark Family Rebecca Cohn Leo Cole
Brandi Feldhousen Eric Filipkowski Noah Fink Lilly Finnegan Carson Flanagan Judy Gibaldi William Gilmore Haley Golden Wendy Gottus Parker Greene The Family Griebel Gavyn & Garrett Groll Amy Guerriero
Christian Jeffries Cassie Jennings Steve Jerkins Michael Jordan
Donations In Honor Of
Mike Adolf Randy Aimo Brendan Almy Owen Alperstein Barbara Ausbrooks
Jerrod Jung Kelley Keyes Nicholas Kouchoukos The Kozel Family Todd Krueger Ben Kuehn Garrett Langford Darryl Langshaw Jonathan Larson Cristi Caviness Laughlin Judy Lavely Matthew Lenhart Barbara Lerman Sydney Lerman Robert & Barbara Levy Sinclair Li David Liang
Connor Crum C.J. D'Angelo Blaise Dafoe Hannah Dixon Jamison Doehring The Doehring Family Haley Dostalik Sue Dreier Gabriella Earnhart Callie Efurd David Egea Andy James Elam Anna Ellis
Scott Avitabile Joe Bailey, Jr. Brian Barker
Grandpa Becker Hunter Beckholt Scott Bergkamp The Bergstrom Family
Hadley Gunn Connor Hajj Jordan Hannan
Roelina Berst Randy Bishop Sheri Bishop Rick Bishop James Black III
Maria Harrington Jameson Hartley Lyes Hassani Rocco Hermogenes Brooklyn Heyns Kennedi Hinton Beckett Hotchkiss
Ellen England Valeri Esartia
Owen Boyce Richard Boys Alan & Becky Braverman Lauren Brown Mary Ann Brown Joey Buckley
Amy Escarcega Lucas Escarcega Mary & Billy Essers
Emma Litvinsky Joshua Looney
Lindsay Fabri Randy Falco Victoria Falcone-Pawar The Feinstein Family
Thomas Howard Kim Huddleston Drs. Sallee and Iannucci Moustafa Ibrahim
Luca Luciano James Ludwig Lulu Maher Harold & Barbara Makanoff
Quade Bywater Drenton Chays
Donald Manderfeld Isabella Marin Bella Marin
Callie Cornely Mike Crissman Crystal Cushing Blaise Martin Dafoe Michael Daly Rita Dean Mary DeMattia J. Doehring Kelsey Dresser H. Steven Durrett James Edwards Andy James Elam Carol, Adrian & Elias Anna Ellis Michael Enbar Joe Erikson Danielle Escarcega Brian Foster Mary Jane Fragano Melodie Friesen Bryan Funk Joseph Gagliano Jr. Rachel Goodman Barbara, Alan & Lily Grainger
Julie Kurnitz Kamden Langford Darryl Langshaw Brian Laughman Jhay Lim
Ann Reinking and Christopher Stuart Riley Styers
Nicholas Sumberaz Cameron Sweeting Danyel & Matthew Tacker Carter Trahan Maggie Tucker Angela Umphlett Annette Van Rijsbergen Youqun Wang Adam Warren Tracy Warren David Warren Pamela Waters Brayden Wesley Tony & Sandy Wilcox Denise Winter Jean Versteeg Monique Voorn Max Wallace
Clark McIntosh Sheila McLean Bert Medina
Colleen Lotzer James Ludwig Richard, David & Norma Makanoff Albert Matsuura Nancy Matthews Alfred Mattram Joseph Mazzuca Sandy Morris Kyle & Bill Murray Matthew Nasutovicz Stacie Neiswender-Coy Robin & Julie Newbrough Michael Nygaard Ida E. Olano Sima Patel Christopher Paulsen Stephen Perel Josephina Piape Lisa Pikul
Daniel Mendez Bailey Milburn Amy & Emmet Miller Liam Miller Craig Miller G. Robert Montague Kyle Murray Michael Murray Christy Nath Éva Nemat-Nasser Pauline & Rick Nemecek Theresa Newton Cathleen Nilles Carole & Joshua Nowak Robert Oswalt Christian Oviedo Jodi Pentecost Daniel Peters Pamela Peterson Brady & Kade Relias Caroline Renninger James Richardson Andrew Rigney Michael Riley Lisa & Danielle Ritell Ginger Roberts Peter Roos Sylvia & Sy Rosen Sophia Roy Ryan Rummer Larry Schellhase Scott Newhart Josh Newnam James Pullins Reed Pyeritz Melanie Rappard
Anna Witiuk Jolene Wolfe Roman Yusupov
Donations In Memory Of
Vincent Griffin William Griffith Andrew Gross Gerry Guimond Kerry Haas Richard Hackley Robert Hart Christina Hasel Fred Hearn
Regan Remulla Shirley Rigney Maryann Roney Julie Roos Gabrielle Ruelos Donna Jean Schell Richard Scott Spencer Sellas Jagdish Shah Micheal Shaw David Sherman Mark Silver Ian Smith Easton Srofe Margaret Stolle Greyson Templeton Gertrude Volk Pamela Waters David Williams Nina Davis Wilson Jeffrey Wurst Matthew Yeager Brandi Todd Larry Tucker
Gus Aguayo Edward Stephenson Archer John Edwin Bailey David Barry Martha Bauer Michael Beardslee Scott Bergkamp Jeff Berkowitz Dr. Charles Berst
Richard D. Heim Marilyn Higdon Alan Hobson Frederick Hoffmann Dwight Hurst Eileen Ilberman Matthew Ingraffia
Randall Bishop Julie Blackwell Charles Bloomgarden Russell Bourgoin Paula Bower Barbara Bowling
Jeremy Izzo Ann Jarosz Steve Jerkins Kimberly Jessup Barbara Harden Johnson Michael Jordan
Michael Brandt Marissa Broady Jeff Burch Kathleen Burton Marshal Castillo Sarah Cayo Brooke Chapman
Richard Scott Judy Sessler Michael Shaw Mary Sheppard Colin Shields Avery Somers Patricia Spring Brendan Steck Erin Steger Margaret Stolle
Jerrod Jung Karim Kaba
Mary Kauffman Harold Kinney Carmela Kolman
Y.C. Chen Mark Coe Nancy Conger
WE ARE IN THIS TOGETHER As a community, network of friends and professionals, and staff, we are working hard, day after day, to weather this unprecedented time together. We want you to know that – even in the uncertainty of today’s world – we remain, first and always, committed to your health and safety. To our medical professionals , we appreciate how you have stepped up in countless ways for our community and those in critical need. Thank you! To our donors, volunteers, and friends , thank you for your continued support. To our community members , we know this is an especially scary time to be living with Marfan, VEDS, Loeys-Dietz, and other genetic aortic conditions. You are strong. We are here for you, always. Your safety, health, and quality of life are why we exist. And that will never change. Our programs may look a little different. Our events have a whole new design. And, change can be hard. But, no matter what shape, every step is taken with you in mind.
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