Connective Issues Spring 2018

CONNECTIVE ISSUES SPRING 2018

KNOW THE SIGNS. FIGHT FOR VICTORY.

Having recently completed my third year as President & CEO of The Marfan Foundation, it is a time of reflection as well as looking to the future. I have learned that… • We have the most resilient, engaged, and knowledgeable community of its type. • Our Board of Directors is a passionate and seriously engaged group of leaders focused on measuring success

The Marfan Foundation creates a brighter future for everyone affected by Marfan syndrome and related disorders. 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. Learn more and get involved at Marfan.org .

through organizational impact. • We have a world class Professional Advisory Board who individually and collectively care for our community members with passion, warmth, and great expertise. • We have a staff of wonderfully talented professionals who touch and help improve lives every day. • And, we have chapters, community groups, and engaged volunteers nationwide who provide front line support for our community 24/7. I have also learned that... • Way too many people continue to struggle with Marfan syndrome and related conditions and we need to do more to improve quality of life for all. • We must be vigilant in our use of resources. • We need to do a better job of supporting related conditions and providing an umbrella for an ever expanding community. • We need to expand our nationwide volunteer base and generate significant, new unrestricted income to adequately fund our fight for victory. • And, we need to establish an international footprint. Although much remains to be accomplished, I am very proud of… • The growth of our Annual Conference and the increasing number of patient symposiums throughout America. • Our ever expanding research program, which will continue to interest young researchers in joining our movement to help improve and save lives. • The upcoming launch of our International Marfan and Related Conditions Registry. • The development of our Quality of Life program. • Our Walk for Victory campaign in more than 15 cities nationwide. • Our commitment to excellence in managing the Foundation as recognized by Charity Navigator, Better Business Bureau, National Health Council, and Best Places to Work in America.

Contents QUALITY OF LIFE 4–6 WALK FOR VICTORY 9 RELATED DISORDERS 10 FOUNDATION NEWS 11 SPECIAL EVENTS 12–14 TRIBUTES 15

CONNECTIVE ISSUES SPRING 2018 VOLUME 37 | NUMBER 2

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

I look forward to seeing many of you at our Annual Conference.

With appreciation,

COVER: DR. AND MRS. ALAN BRAVERMAN, HOSTS OF HEARTWORKS ST. LOUIS. READ ABOUT THIS EVENT ON PAGES 12-13.

This issue of Connective Issues is supported by an educational grant from the Chu and Chan Foundation.

Michael L. Weamer President & CEO

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MARFAN AWARENESS MONTH 2018

More than 2,000 people used our profile frame on Facebook and many shared facts on social media every day during Marfan Awareness Month.

There was unprecedented action from our Marfan and related disorders community in February, Marfan Awareness Month. Volunteers from coast to coast organized awareness events, held fundraisers, shared their stories with the media, and lit social media on fire with information about Marfan syndrome and related disorders. They took our #KnowFightWin campaign to heart and amplified their collective voice to create a brighter future for everyone living with these conditions. MELISSA KELLER, A 5TH GRADER FROM PROVIDENCE, RI, WHO HAS MARFAN, CREATED AN AWARENESS TABLE IN HER SCHOOL’S DINING HALL TO RAISE AWARENESS AND FUNDS DURING MARFAN AWARENESS MONTH. HER EFFORTS ALSO MADE NEWS IN THE LOCAL PAPER. WAY TO GET YOUR COMMUNITY TO HELP YOU #KNOWFIGHTWIN!

ANSLEY SIANO (8TH GRADE), OF HOLLY SPRINGS, NC, AND JORDAN HANNAN (6TH GRADE), OF CHAPEL HILL, NC, HELD A BAKE SALE AT THEIR SCHOOL ON FEBRUARY 28 FOR MARFAN AWARENESS MONTH AND RAISED $1,525 FOR THE FOUNDATION! THROUGH POSTERS IN THE SCHOOL AND FLYERS THEY SENT HOME, THEY ALSO

EDUCATED A LOT OF PEOPLE ABOUT MARFAN AND RELATED DISORDERS. THAT’S HOW TO #KNOWFIGHTWIN!

The Marfan Foundation encourages our community to help us #knowfightwin all year long! To get involved, please contact Suśan Sobers, director of volunteer engagement, ssobers@marfan.org or 516-883-8712, ext. 116.

STEVE XYDAS, MD, CHIEF OF THE COLUMBIA UNIVERSITY DIVISION OF CARDIAC AND THORACIC SURGERY AT MOUNT SINAI MEDICAL CENTER ON MIAMI BEACH, HELPED US KICK OFF #KNOWFIGHTWIN AT THE SOUTH FLORIDA WALK FOR VICTORY.

Spring 2018 3

QUALITY OF LIFE

NEW CAMPING OPPORTUNITY Normalizing Childhood for Kids with Marfan and Related Disorders

swimming, boating, archery, arts and crafts, dances, campfires, and much more in a safe environment using therapeutic and adaptive equipment. When your child shares these experiences with their peers, they create memories that can change them forever. “We attended the Family Camp weekend in 2017. Ole felt so at home with others who experience life like he does.” “When our family learned about another opportunity for Ole to participate with kids who have Marfan syndrome, we jumped at the chance to send him to Camp Victory!” said Heather Johnson, of Pittsboro, NC. “We attended the Family Camp weekend in 2017. Ole felt so at home with others who experience life like he does. He made life-long friends. Thanks to these friendships, Ole knows that he will be okay. We aren't able to send Ole to many camps because, even if they can accommodate his health restrictions, Ole feels left out. Many thanks to The Marfan Foundation for providing this summer

OLE JOHNSON, RIGHT, WITH HIS NEW CAMP FRIEND, LIAM NELSON.

Summer camps are a rite of passage for many children— where they can learn independence and grow in a safe envi- ronment. Many parents in our community have expressed sadness that a regular day camp or sleepaway camp is not always practical or safe for children with Marfan or a related disorder. Thus, their kids have had to miss out on the camp experience. But not anymore. Last year, the Foundation piloted a family camp weekend, and the response was so positive that we expanded our camping program this year. Our second family camp was held in April 2018 and was even bigger and better than last year. And, for the first time, we are offering Camp Victory, a week-long camp just for children at the Twin Lakes Dream Camp, 45 minutes outside Atlanta in Warm Springs, GA. Camp Victory offers children and teens, ages 7 to 18, an opportunity to have an independent camp experience. Children participate in all camp activities, such as lake

camp opportunity!” The registration fee for Camp Victory is $250 per child. There is a special discounted rate of $125 each for the first 20 children who register. The fee covers accommodations in air-conditioned cabins, meals, and all camp activities. The camp has flat paved paths and there is only a short distance between activity areas. The camp meets all federal accessi- bility standards and guidelines. A nurse who is experienced with all aspects of connective tissues disorders will be available at all times. Parents are required to provide us with completed medical forms so we have all the information to keep your child healthy and safe at camp. If you have any questions or medical concerns, please contact Susan Leshen, the Foundation’s senior director of patient and program services and volunteer engagement, sleshen@marfan.org.

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QUALITY OF LIFE

SOCIAL SECURITY DISABILITY By Dawn Knowles On February 27, the Marfan Syndrome and Related Disorders Empowerment Series featured a talk on Social Security Disability Insurance (SSDI) and Supplemental Security Insurance (SSI) with speakers Jon Rodis, a national disability advocate who has Marfan and is the President of the Foundation’s Massachusetts chapter, and his wife, Kathleen Kane, Esq., a disability attorney. The webinar featured excellent information for those starting the process. Here are the six things I learned from the webinar that I wish I had known before. 1. Know that inner turmoil and wrestling is normal as you decide to give up your career. Deciding to apply for disability is difficult and requires an exploration of health, financial, and emotional considerations. Jon shared that the emotional piece was toughest for him and I found the same to be true for me. 2. Most people are denied initially. Jon said, “Don’t get discouraged when you get that first letter of rejection because that’s almost automatic… some people don’t realize that they should really continue and it’s just part of the process… that’s when you appeal.” Jon and Kathy went on to say that many are denied again. The next step is a hearing a year or so later and that’s when many are approved. Don’t give up! 3. A daily journal is important. Record your health details and how you are feeling. Be specific about pain, energy levels, or whatever your issues are. If you were so fatigued you couldn’t shower, write that down. These details are valuable. 4. Learn as much as you can about your specific condition so you can share what you know. Check out Marfan.org for resources. Even the medical experts with the Social Security Administration (SSA) may not fully understand the implications of Marfan syndrome and related disorders. 5. Invite support from your medical team. Review your medical records and talk to your doctors about anything you don’t agree with. Write a statement about your exact limitations, detailing everything physical and mental you deal with and showing what your daily life is like, to share with your doctors and SSA. If it plays into your functionality, it matters—that includes depression and anxiety. If your condition isn’t on the SSA list of impairments, your limitations and residual functional capacity are what makes you disabled. 6. Jan Lynch, MSN, RN, director of the Help & Resource Center at The Marfan Foun- dation, can write a support letter for you. She will work with you to describe your health condition and explain how limiting and disabling it is, whether you have Marfan, Loeys-Dietz, or Ehlers-Danlos syndrome. Email her at jlynch@marfan.org.

EMPOWERMENT SERIES

The Marfan Syndrome and Related Disorders Empowerment Series has featured several vital topics on quality of life issues since it launched earlier this year. • Physical therapy for people with Marfan syndrome, Ehlers Danlos syndrome, and other connective tissue disorders. • Social Security Disability Insurance and Supplemental Security Insurance. • Self-care and empowerment strategies. • Mental health care for beginners. “So appreciative of this insight.” “Really appreciated the input and suggestions.” “This was excellent! Well worth the time. It had practical information in an easy-to- understand format. Loved how the questions were handled at the end.” The recordings of all webinars are available via the Empowerment Series page of our website. The site also provides information about upcoming webinars and how to register. If you’d like more information or if you have suggestions for future webinars, please contact Susan Leshen, director of patient and program services and volunteer development, at sleshen@marfan.org. The Marfan Syndrome and Related Disorders Empowerment Series is made possible by an educational grant from the Chu and Chan Foundation.

If you are considering applying for disability now or in the future, I recommend the webinar. A recording is available on the Foundation website.

Dawn Knowles was diagnosed with Marfan syndrome at age 21 and survived an aortic dissection at age 28. She loves writing, going to the beach, and, most of all, spending time with her husband, adult kids, and two adorable grandsons in sunny California. Dawn is a member of the Foundation’s Marfan Writing Group.

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QUALITY OF LIFE

REFRAMING YOUR LIFE Using Your Thoughts to Improve Your Quality of Life and Overcome Obstacles

By Lindsey Rusche

and our behavior. This type of therapy or coaching aims to help people become aware when they have negative or unhelpful thoughts. Cognitive Behavioral Therapy can then help develop alternate ways of thinking and behaving that reduce negative patterns and, hopefully, decrease emotional distress, depression, and anxiety. CBT is based on the concept that your thoughts, feelings, physical sensations, and actions are interconnected, and that negative thoughts and feelings can trap you in a vicious cycle. For example, a cycle may start with negative thoughts, and then you feel worse, and, as a result, you do less or enact negative or destructive behavior, and then, as a result of the behavior, it feeds more negative thoughts and then you feel even worse, and on and on. [CBT] looks for practical ways to improve your state of mind on a daily basis. A tool like CBT aims to help you deal with overwhelming problems in a more positive way by breaking obstacles down into smaller parts. You're shown how to change these obstacles and negative patterns to improve the way you feel. CBT deals with your current problems, rather than focusing on issues from your past. It looks for practical ways to improve your state of mind on a daily basis. How can I use CBT? I truly believe that our mind is our greatest asset. There are many resources to introduce yourself to CBT; books, pod- casts, and videos are readily available online for self-study. Working with a qualified therapist (psychotherapist or social worker) who is trained and focused on CBT is very helpful. Or you can access a weekly CBT group online or in person to learn the tools, practice the ideas together, and support each other. I utilize a combination of all of these to keep my depression in check, to keep my life manageable, and to create a fulfilling life in spite of the complications of Marfan syndrome.

The Marfan Foundation recently conducted a survey and identified several obstacles that interfere with quality of life for people with Marfan and related disorders. The obstacles include pain, physical limitations, lack of stamina, vision issues, sleep, and depression or feeling down. For many of us, part of dealing with our diagnosis is also dealing with these obstacles. It can sometimes be tough to manage the thoughts and emotions associated with such a chronic illness and this can affect our happiness. I am no stranger to dealing with such challenges. Over the years, I have developed a toolkit that I actively use to im- prove my quality of life. I believe that using your brain and your thoughts to manage some of the stress and difficulties we deal with is a great tool. You don’t need to be diagnosed with depression or anxiety to use and get value from a psy- chological technique called Cognitive-Behavioral Therapy, one of my chosen tools. What is Cognitive-Behavioral Therapy (CBT)? Changing the pattern of your thinking can help you overcome obstacles and provide coping techniques. We can’t change our cells or many of the complications of our genetic disor- der, but we can change how we think about them and how they make us feel. Cognitive-behavioral therapy is a form of intervention often used in psychotherapy, counseling, and life-coaching that intervenes on our thoughts. We can con- trol and harness the power of our own thoughts to reframe and retrain our brains into more adaptive ways of thinking. CBT is a psychosocial intervention that is most widely used for improving mental health. It can help us develop personal coping strategies that target and change unhelpful patterns in thoughts, behaviors, and emotions. But CBT is not just as simplistic as positive thinking. CBT can help people learn how to recognize certain patterns (thoughts, behaviors, feelings) and—once trained to effectively recognize those thoughts as they happen—they can then be guided into more realistic and positive thoughts. CBT does take effort, awareness, and on-going practice—just like a muscle, this skill can get stronger with work, but can also get weaker if not used regularly. How can CBT help me? CBT is based on the idea that how we think (cognition), how we feel (emotion), and how we act (behavior) all interact together. Specifically, our thoughts determine our feelings

Lindsey Rusche is a Toronto-based communications professional and writer with Marfan syndrome. Lindsey is a member of the Foundation’s Marfan Writing Group.

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VOLUNTEERS

MARFAN MOM FINDS A CREATIVE WAY TO GIVE BACK

affected by Marfan syndrome. Recently, she learned about Color Street nail polish strips, which her friend was selling. Said Michelle, “The product was fantastic and so easy to use that I imme- diately bought eight sets. This product was going to free up three hours a month in the salon chair, which is huge for me, and I believe in the quality and ease of use of this product. My friend also explained to me how easy it was to get set up as an independent stylist with Color Street. A little light bulb went off in my head that, if could sell this product in large quantities, I could use the commissions earned as monthly donations to The Marfan Foundation. I signed up that day!” Michelle is donating 95 percent of her commissions to The Marfan Foundation and, in her first two months, she has raised more than $1,000. Initially, her donations are going directly to Team Kendra in the Portland Walk for Victory (May 20). People who have purchased the product from her feel great that a portion is going to a worthwhile cause.

“SOMETIMES IT IS DIFFICULT TO SEE HOW YOU AS AN INDIVIDUAL CAN MAKE A DIFFERENCE IN A WORLD SEEMINGLY LACKING OR DEVOID OF HOPE. I PRAY THAT MY FAMILY’S STORY CAN HELP INSPIRE OTHERS TO TAKE UP THE MANTLE OF HOPE AND CHANGE. I AM SO VERY THANK- FUL FOR THE PARTNERSHIP AND SUPPORT FROM THE MARFAN FOUNDATION IN MY EFFORT TO INCREASE MARFAN SYNDROME AWARENESS AND FUNDING FOR THE GREAT THINGS THE FOUNDATION DOES FOR ALL OF US.” — MICHELLE GADDIE

Michelle Gaddie, of Oak Harbor, WA, first learned about Marfan when she read an article in a magazine that was randomly left on her seat on an airplane. She quickly got the feeling that the article described her then two-and-a-half year old daughter, Kendra. “I remember calling my husband as soon as I landed and implored him to make the first available appointment for a Marfan screening at the Mayo Clinic in Rochester, MN [near where she lived at the time]. “I believe to this day that the publication was left in that particular seat pocket for me to discover and I am so very thankful it was there.” Kendra, who is now 10, stands 5’ 7 ½ ” tall. She has been on medication to slow her aortic growth since she was diagnosed and faces a lot of the same challenges that many with Marfan face. She loves to draw Japanese Anime and is learning to play the piano. Michelle, who is a consultant for KPMG and travels every week for her career, wanted for a long time to do something that would have a positive impact on other children and families

“I do believe that it is going to be the small contributions of many individuals that will have the greatest impact in our society.” “When my daughter was first diagnosed, The Marfan Foundation was an endless source of information and resources for our family. I have always been so very appre- ciative of the work the Foundation does for our children and the families affected by this cruel disorder. I do believe that it is going to be the small contributions of many individuals that will have the greatest impact in our society.” Looking for a way to get involved? Please contact Suśan Sobers, director of volunteer engagement, ssobers@ marfan.org.

Spring 2018 7

#KNOWFIGHTWIN

2018 ANNUAL CONFERENCE Join us on July 12–15, 2018, for our 34th Annual Conference held in association with Stanford Health Care and Kaiser Permanente. Create long-lasting connections, enjoy special programs for children and teens, learn from leading medical experts on Marfan and related disorders, and more. Learn more and register at: Marfan.org/Conference2018

WALK FOR VICTORY

WALK THIS WAY Brad Baker Finds Community in Walk for Victory

WALK FOR VICTORY UPDATE

We met Brad Baker at the Atlanta Walk for Victory in March. It was the first time he had met people outside of his own family who have Marfan syndrome. He wanted to share his story because he thought it would help others.

As this issue of Connective Issues goes to press, our Walk for Victory is celebrating unprecedented success. By the end of June, we will have raised more than $525,000 in 13 cities, with more than 2,500 participants. This is the first time we have surpassed half a million dollars to support community programs. In addition, there have been countless friendships formed and the amount of public awareness and community support generated has been incredible. Pasadena, Portland (OR), New York City, and Boston. We can’t wait to #knowfightwin with you! In the coming year, we are gearing up for Walks in many of the same cities as this year, beginning with St. Louis on October 7, and in new cities, such as Indianapolis on October 14. Watch our website and follow Walk for Victory on Facebook to learn about our upcoming Walk for Victory schedule. If you have any questions, please contact Kim Huddleston, national walk director, khuddleston@marfan.org. Our Spring 2018 Walk for Victory calendar includes

How were you diagnosed with Marfan? I was blessed to have a mom who was knowledgeable about Marfan syndrome. She started bringing me to the cardiolo- gist when I was about 10 years old. I didn’t have genetic testing until I was 30 at Johns Hopkins in Baltimore. What was it like growing up with the condition? Growing up in the 90s, I loved basketball. I’ll never forget my parents telling me I couldn’t play basketball anymore, and

BRAD BAKER, AND HIS WIFE, ALLY

some of the confused reactions of my friends. Experiences like this are trying, but it led me to my one true love—golf! I took it up at age 12 and haven’t looked back since. I learned to live with my limitations, and it really wasn’t all that bad. What kind of support have you had over the years? Honestly, not a lot. I had never met another person with Marfan syndrome (besides my mom) until this year’s Atlanta Walk for Victory. Libby Sparks at Johns Hopkins was one of the most important people if my life. She supported me by giving me great perspective. She always told me to go out and live my life—go travel and play We recently met Ryan Ingraffia after reading about her husband, Matt, on the Walk’s fundraising page. I’ve learned a lot about Matt in the last few weeks — what an incredible guy. Their story inspired us to get involved. I went with my wife, Ally, so she was the only person I knew going in. We were immediately greeted by Kim Huddleston [the Foundation’s national walk director]. She made us feel comfortable right away. We spent time learning about all the great resources the team has pulled I know the Foundation can’t be effective without fundraising. Events like this create awareness and an urgency to give. Seeing others who live successful lives is a great benefit of these events. I saw people with families leading healthy, happy lives, What a remarkable thing! What would you tell others who are feeling alone? You should be proud of who you are. Meeting people who are experiencing the same life challenges as you is a good thing. It took me until I was 34 years old to do it—everyone moves at their own pace. Want to connect with community? Visit the community calendar at Marfan.org to learn about Walks for Victory, Regional Symposiums, and local group events. If there are none near you, there are many ways you can connect with people online through our social media. We also offer a mentor program; contact Susan Leshen, sleshen@marfan.org, for details. some golf. Support from good healthcare providers is invaluable. What was your experience like at the Atlanta Walk for Victory? together and talked to lots of people about their experiences. How has the Walk changed your perspective of Marfan?

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RELATED DISORDERS

POTS AND EDS HYPERMOBILITY SYNDROME

of POTS in individuals with EDS. One term you might see thrown about is dysautonomia. This means that the part of the nervous system that is supposed to be acting automati- cally, without conscious action, is not working appropriately. Our autonomic nervous system has a huge impact on blood circulation, digestion, and mood, so it is not surprising that in EDS, a syndrome with marked dysautonomia, POTS would be prevalent. Treatment of POTS varies depending on the suspected cause. Some of the simpler treatments include compression stockings and exercise to improve blood flow when standing. In some cases, a doctor may recommend increasing the amount of fluid that you drink, as well as increasing your intake of electrolytes and salt. There are also several medica- tions that may be prescribed, including beta blockers, one of the first line treatments for protecting the heart from aortic dissection in Marfan syndrome, but none of these treatments work 100 percent of the time. Because of its range of severity and presentation, POTS therapy must be individualized and monitored closely. The care of a knowledgeable physician is necessary to help manage POTS. Diagnosis and proper treatment of POTS can be difficult because aspects of the condition often mirror other more common conditions such as vertigo, generalized anxiety disorder, irritable bowel syndrome, and being generally out of shape. Having a proper diagnosis of EDS can help as it will raise physician’s suspicion of POTS. This is challenging because EDS doesn’t always present in a textbook manner or respond to treatment as predicted. If you believe you are suffering from POTS, advocating for yourself with your physician is of utmost importance to ensure high quality care. POTS may be a daunting chronic diagnosis, but it can be monitored, treated, and controlled once a patient has the proper tools. Please contact the Foundation’s Help & Resource Center at support@marfan.org if you have questions on POTS, or any other medical questions related to EDS, Marfan syndrome, and other related disorders.

By Bob Graybill Reviewed by Dr. Heidi Connolly and Dr. Alan Braverman

Connective tissue disorders go far beyond hyperextending elbows and back pain. In some cases, heart issues related to connective tissue are not limited to life-threatening aortic dissections and valve disorders. Positional Orthostatic Tachycardia Syndrome (POTS) commonly impacts people with Ehlers Danlos syndrome (EDS) Type III (hypermobility syndrome). POTS is a rise in heart rate upon sitting straight or standing from sitting or lying down... combined with the myriad of symptoms that accompany it in EDS patients, a To understand POTS, let’s break down the name of the condition. First, positional: this means that POTS changes based on whether someone is standing, sitting, or lying down. Next, orthostatic: this means “relating to or caused by an upright posture.” Finally, tachycardia means a rapid heart rate. Hence, POTS is a rise in heart rate upon sitting straight or standing from sitting or lying down. This sounds simple, but when combined with the myriad of symptoms that accompany it in EDS patients, a complicated and difficult to diagnose picture can emerge. Common symptoms of POTS include dizziness, lighthead- edness, weakness, blurred vision, and fatigue on standing. Some people also suffer from palpitations, changes in vision, and anxiety. These symptoms are combined with issues in other body systems. Common gastrointestinal symptoms that often go along with POTS may include nausea, cramping, constipation, and diarrhea. Chronic headaches, fainting, and swelling of the legs may also happen. If you think you are suffering from POTS, one of the indications is an increase in your heart rate upon standing using a special table called a tilt table. The exact cause of POTS in EDS has yet to be completely explained; however, its link to Ehlers Danlos is well docu- mented. Contributing factors include issues with the volume of fluid in the body, blood flow, and the nervous system. The nervous system issues are often considered a primary cause complicated and difficult to diagnose picture can emerge.

Bob Graybill is a naturopathic doctor practicing primary care at Vitality NW in the Portland (OR) area. He is passionate about helping individuals with Marfan syndrome and other connective tissue issues because of his experience with his daughter, wife, and extended family’s Marfan diagnoses. Bob is a member of the Foundation’s Marfan Writing Group.

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FOUNDATION NEWS

PAB AND SAB NEWS

FOUNDATION NAMED AMONG THE 2018 BEST NONPROFITS TO WORK FOR The Marfan Foundation has been selected as one of the 2018 Best Nonprofits To Work For . The announcement was made by The Nonprofit Times , the leading business publication for nonprofit management. The Foundation ranked #48. “We are excited and honored to be recognized,” said Michael Weamer, the Foundation’s president and CEO. “We have participated in this process the past two years as a way to compare our staff culture to similar organizations in an effort to find ways within our ability to enhance employee satisfaction. I could not be prouder of our staff team as their individual and collective feelings about working for The Marfan Foundation and our extraordinary Marfan and related disorders community resulted in this success.” Professional development, training, communication and confidence in leadership were among the top characteristics across the top 50 organizations. “When our Board of Directors and staff started out several years ago to build on our past and create a great organization for the future, enhancing our credibility within our sector and building a great staff team were two of our key priorities. We are pleased to be moving the needle in both areas,” said Judy Gibaldi, chief operating officer at the Foundation.

The Marfan Foundation is privileged to have an esteemed Professional Advisory Board, which provides medical oversight, and Scientific Advisory Board, which plays a critical role in our research grant program. Here are some of their recent accomplishments.

Professional Advisory Board Dr. Irene Maumenee was honored with the 2017 Laureate Recognition Award by the American Academy of Ophthalmology. The Academy’s highest honor, this award is given annually to a single ophthalmologist for exceptional scientific contributions toward preventing blindness and restoring sight worldwide. Dr. Maumenee, who is the second woman recipient in the award’s history, was chosen from among the Academy’s worldwide community of 32,000 medical doctors. Dr. Joseph Coselli received the 2017 Ray C. Fish Award for Scientific Achievement, recognizing Dr. Coselli’s innovative work in aortic aneurysm surgery. The award, presented annually by the Texas Heart Institute (THI) at Baylor St. Luke’s Medical

DR. IRENE MAUMENEE WAS HONORED WITH THE 2017 LAUREATE RECOGNITION AWARD BY THE AMERICAN ACADEMY OF OPHTHALMOLOGY.

Center, recognizes those whose innovations have made significant contributions to cardiovascular medicine and surgery. In addition, Dr. Coselli was inducted into the Baylor College of Medicine’s Alpha Omega Alpha (A Ω A) Medical Honor Society. Dr. Alan Braverman received the 2018 Distinguished Clinician Award from Wash- ington University School of Medicine. Nominated by his peers, Dr. Braverman was recognized for his achievements, talents and dedication. Dr. Paul Sponseller was selected to the Presidential Line of the Scoliosis Research Society. The Scoliosis Research Society is the premier international society aimed at fostering optimal care for all patients with spinal deformities. Dr. Duke Cameron was named president of the American Association for Thoracic Surgery. The American Association for Thoracic Surgery is an international organi- zation of over 1,300 of the world's foremost cardiothoracic surgeons representing 41 countries. Its members have a proven record of distinction within the specialty and have made significant contributions to the care and treatment of cardiothoracic disease throughout the world. Scientific Advisory Board Dr. John A. Elefteriades received an honorary PhD from the University of Liege (Belgium) for contributions to the diagnosis and treatment of thoracic aortic aneurysm disease.

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SPECIAL EVENTS

10TH HEARTWORKS ST. LOUIS GALA Celebrating a Decade of Progress and Dr. and Mrs. Alan Braverman

the gala’s Centurian Sponsor. More than 300 people were in atten- dance at the gala. In addition to the medical and business community, more than two dozen people with Marfan or a related disorder and their family members were there. The gala raised $324,000 this year, bringing the 10 year total to more than $2.3 million. Jay Elliott, president of the Foundation’s St. Louis Chapter, attended Heartworks St. Louis with his wife, Mary. He said, “It is hard to describe the feeling of sitting in a huge ballroom packed with several hundred people whose sole purpose for being there is to help you. I was awestruck and deeply moved by the fact that all of the clinicians, medical staff, and donors were there to help people like me and my son. I am also overwhelmed with gratitude for Dr. Braverman. It would be enough if he were simply who he is as a clinician. (He literally saved my life twice and

SEVERAL OF THE PHYSICIANS WHO ARE PAST HEARTWORKS ST. LOUIS HONOREES: (BACK ROW, LEFT–RIGHT) ALAN BRAVERMAN, MD, KEVIN BLINDER, MD, PATRICK GERAGHTY, MD, MARC MOON, MD, (FRONT ROW, LEFT–RIGHT) NICHOLAS KOUCHOUKOS, MD, GREG SICARD, MD.

The Heartworks St. Louis gala celebrated its 10th anniversary this year with an evening that was meaningful and fun for all who attended. This has always been the goal for Dr. Alan Braverman and his wife, Rebecca, who created Heartworks St. Louis in 2009 and have served as hosts each year. The 2018 gala, held at the Four Seasons St. Louis on March 17, was a special occasion as honorees from the past ten years—researchers, clinicians, business leaders, and community partners—were recognized for the work they’ve done and the support they’ve provided to make advances in the diagnosis and treatment of Marfan syndrome and related disorders possible. “We are so grateful to the St. Louis and Metro East community and our gala committee which has supported this event for the past ten years,” said Dr. Braverman. “Through the success of Heartworks St. Louis, we have increased awareness in our region and achieved critical advances in the diagnosis and treatment of patients with Marfan syndrome and related disorders.” The evening also featured a special surprise presentation to Dr. and Mrs. Braverman for providing the vision, leadership, and commitment to Heartworks St. Louis. The presentation was made by Michael Neidorff, CEO of Centene Corporation,

continues to improve it with his ongoing excellent care.) But add on top of that who he is as a person. His devotion to

BROOKE AND RILEY PULLIAM, MEMBERS OF THE FOUNDATION’S ST. LOUIS CHAPTER

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SPECIAL EVENTS

HEARTWORKS ST. LOUIS

HONOREES 2009–2018

Dr. Doug & Sharon Aach

Dr. Kevin Blinder

Dr. Keith Bridwell

Dr. Patrick J. Geraghty

Dana Gima, BSN, RN

Dr. Christina Gurnett

BARBARA AND JONATHAN LERMAN, AND THEIR DAUGHTERS, CARLY AND SYDNEY, MEMBERS OF THE FOUNDATION FROM NEW YORK, WHO SHARED THE STORY OF THE LIFE-SAVING CARE THEY RECEIVED FOR SYDNEY WHEN THEY WERE IN ST. LOUIS FOR THE FOUNDATION’S ANNUAL CONFERENCE IN 2005. SYDNEY HAD GONE INTO HEART FAILURE AND RECEIVED A HEART TRANSPLANT THERE. SHE IS NOW 14 YEARS OLD AND THRIVING. The Foundation and his continuing efforts to create a community with us, his patients, is helpful beyond description.” Dr. Braverman, who is the Alumni Endowed Professor in Cardiovascular Diseases and Director of the Marfan Syndrome Clinic at Washington University School of Medicine and Barnes-Jewish Hospital, lost his father to Marfan syndrome. His brother and nephew also have the condition. Dr. Braverman has served on the Foundation’s Professional Advisory Board since 1999, including a term as Chair. In 2017, he began his second stint on the Foundation’s Board of Directors.

Dr. Charles Huddleston

Dr. Nicholas Kouchoukos

Dr. Lawrence Lenke

Cheryl Marshall

Dr. Robert Mecham

Dr. Marc Moon

Michael & Noémi Neidorff

Robert & Donna Plummer

Ron & Pam Rubin

Dr. Angela Sharkey

Dr. Greg Sicard

Barb Stehman, BSN, RN

Dr. Marcia Willing

DR. MARCIA WILLING, 2018 HERO WITH A HEART AWARD RECIPIENT

MICHAEL AND NOÉMI NEIDORFF, HONORED IN 2014 AS CORPORATE CHAMPIONS

Spring 2018 13

SPECIAL EVENTS

SAN FRANCISCO HAS HEART First Evening with Heart in San Francisco is a Resounding Success

WHY MONTHLY GIVING IS GOOD

Monthly subscriptions are every- where nowadays and, even before services like Netflix revolutionized how we consume and pay for things like TV, we were used to monthly billing. For everyone, monthly pay- ments spread out during the year make the outlay more tolerable for budgets and allow for easy planning. This is also true for charitable contributions. As a monthly donor to The Marfan Foundation, you can receive one tax receipt for your yearly contribution or a monthly tax receipt; it’s up to you. Either way, monthly giving makes it easier for you to keep tabs on your donations. And that’s not all. As a monthly donor to The Marfan Foundation, you will receive fewer “asks” from us and more updates. Your gift made over the period of several years stacks up in terms of total impact. For example, if your donation is for our conference scholarships, you can see how the conference changes lives year after year. In addition, your monthly gift supports the Foundation’s ongoing programs and helps us grow. To become a monthly donor, please go to Marfan.org, click on donate, and indicate that you would like your donation to be monthly. If you have any questions, please contact Helaine Baruch, chief development officer, hbaruch@ marfan.org. Monthly Donation Means Greater Impact

The Foundation held its first Evening with Heart in San Francisco on February 1, and the local community responded enthusiastically. Nearly 100 people enjoyed a fun-filled evening with great food and conversation. They learned about Marfan and related conditions and they bid on amazing silent auction items, raising $90,000 for the Foundation. Evening with Heart was chaired by Emily Wheeler, a member of the Foun- dation’s Board of Directors, and her husband, Myles Danielsen. They were joined by an incredible committee of supporters. The funds raised support the Foundation’s life-saving and life- enhancing programs and services. “The Marfan Foundation has always been very close to my heart,” said Emily, who was diagnosed with Marfan at the age of 3. “I was excited to introduce my community in San Francisco to the Foundation, as well as educate everyone about Marfan and spread awareness.” Emily explained to attendees how her parents turned to the Foundation for state-of-the-art medical information, as well as practical advice and emotional support. “I can’t imagine growing up without the Foundation,” said Emily. “I’ve met other affected individuals from all over the country, some mildly affected like me, and others who face daily health challenges. Especially as a teenager, it was comforting and life-affirming to have friends with experiences similar to my own. And the research funded by The Marfan Foundation has directly impacted my life by identifying the best treatments.”

EVENING WITH HEART SAN FRANCISCO CO-CHAIRS, EMILY WHEELER AND MYLES DANIELSEN

The first Evening with Heart in San Francisco raised far more money than Emily anticipated, and she has big plans to attract even more people in the years to come. “I want to continue to brainstorm ways to encourage attendance so that this is an event people look forward to every year and don't want to miss!” she said. The Foundation could not be more grateful.

As this issue went to print, we were also celebrating a successful Evening with Heart in Chicago. Special thanks to our committee chairs, David and Heather Earnhart, and committee members Heather Berhalter, Dr. Joseph Camarda, and Elizabeth Cappella. The event raised more than $30,000.

14 Marfan.org

TRIBUTES

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. 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 connective tissue disorders.

Donations In Memory of: Carmen Abate Carol, Adrian & Elias Adame Anthony Albano, Sr.

Fred Hearn Jesse Heck

Carl Bartizek Gilbert Bashe

Dilip Patel Richard Patka Christopher Paulsen Mark Perry Roberta Pfleging Edgard Pierre Jackie Prindle Julie Propp Evelyn Regan Kevin Richard Andrew Rigney Brock Robertson Ethan Robinson Maryann Roney Naomi Roney Carla Rosales Keith Rudy Gabrielle Ruelos Gary Salzman Harry & Callie Saenger Candace Schmit Efrat Schwartz Regina Schwartz

Alixandrea Hallahan Jeff & Tonya Halter Rocco Hermogenes Hannah Hill Sandra Hill Max Hillel Max Hommel Deasia Houston Sam Howell Kimberly Huddleston Larry Jefferson Christian Jeffries Gail Jehan Cassie Jennings Caryn Kauffman Brody Keil Amy Kipnis Benjamin Kuehn Nicole Kunard Lyz Kurnitz Foxy Kusin Eugene Kutner Sabrina Lang Danielle Langhorne Shoshana Leeder Matthew Lenhart Sydney Lerman Ian & PJ Lesko Sarah Levy Andi Lewis Sinclair & Simon Li David Liang Joshua Looney Rebecca Lopkin Luci Luetkemeyer Daniel Lugano Georgia Mace Jerome Madson Sara Maher Barbara & Harold Makanoff Kyle Mann Grant Martin Eileen Masciale Karen Maxwell James Mayer Morgan Masterman & Peri Graybill Michael Mazzuca Judy Lavely Alec Lebeda

Nicole Perez Danny Petric TJ Phillips Josefina Piape Reed Pyeritz Andrew & Sarah Rankins Ann Reinking & Chris Stuart Brady & Kade Relias Mike Revelle Judith Ricca Douglas Richter Michael & Ginger Roberts Mary Rodriguez Charles Rogers The Rogers Family Seth Rogge Jessica & Joseph Roman Kyler Romano Mr. & Mrs. Peter Roos Ron & Pam Rubin Mr. & Mrs. Wade Ruddock

Richard Heim Shawn Heldt Kyle Hempstead David Hill Jack Hinchion Jim Hinds Marvin Hohenstein Ben Holt Max Hommel Eileen Ilberman Matthew Ingraffia Ann Jarosz Steve Jerkins Gail Johnson Marsha Jones Michael Jordan Jill Kaeppel Robert Keating Tom Kievit Marc Knell Carmela Kolman Ed Kovic Margaret Kristl Julie Kurnitz Eugene Kutner

Hunter Beckholt Steve Beckholt The Bergstrom Family Reed Berhalter Sheila Berkowitz Austyn Bevis Paula Bower Alan & Becky Braverman Cara Brobst

Shane Albaugh Mary Anderson Carrie Ann Tyler

Gloria Arias Vicki Asbury Brian Barker Raymond Barlow David Barry Donna Beard Michael Beardslee Yedidya Ben-Avraham Jeff Berkowitz Ryan Bonner Madison Boudreaux

Bryan Butvick Morgan Byrnes Tommy Cadden Vivian Capaccione Austin Carlile Zane & Jennifer

Christensen & Family John & Danica Ciccariello Priscilla Ciccariello Andy Cogen Leo Cole Kelly Coselli Pennie Couch Jason Cox Michele Cripps Steven Crombe Lisa D’alessandro Cynthia Daniele Abe DeAnda Katharine Dennis James Dickey Ashley & Damian Dockery Haley Dostalik Brie Edwards DJ Edwards Jim & Anita Edwards Callie Efurd Ellen England Patrick Enright Lucas Escarcega Valery Esartia Billy & Mary Essers Matthew Falco Randy & Susan Falco Ella Feek Beverly Feinstein Jennifer Fiedler Carson Flanagan Joseph Fontana Evan Freeley Kelly Frick The Gaboriault Family Mads & Aila Gjefsen Skyler Glassford Haley Golden Paul Grady Alan & Lily Grainger Matt Green Sadra Bella Green Jodi Feinstein Ethan Fellows

Barbara Bowling Marissa Broady Murray Bromberg Terri Brooks Jennifer Buffone Matthew Bullis

Kierra Rydzewski Harvey Schatten Bill Selvitelle Mandy Shaw Mikey Shaw Jean Shenk Kayla Silverman Darrius Singh Suśan Sobers Avery Somers Daniel Speck Max Spencer Lowell Stephens Heidi Stepp Carter Stuckman Nicholas Sumberaz

Jacob Searcy Spencer Sellas Neva Seymour Dorit Shapiro Mike Shaw David Sherman Barbara Short Mark Silver Rosanne Simone Rosalind Smerling Elizabeth Sparks Casey Sprouse H. Steven Durett Bridget Sweet

Paul Bullis Paul Burke

Jerry & George Butler John & Carolyn Cafarelli Gabrielle Cannistraci Sarah Cayo Diana Chamblin Brooke Chapman Morris Confino Sarah Confino Alex Connor Callie Cornely Alyssa Cornn Michael Daly Jacquie Dixon Angelina Dolge Ann Dolish Marcos Dorfeo Justin Duck Clayton DuVall Hilary Eagan Clark Anna Ellis Patricia Evans Ben Faust Autumn Ficco Marx Adam Frank Todd French Melodie Friesen Bryan Funk Gregory & Christopher Gilmore Menetta Graeber Wied

William Kutz Robert Lake

Stanley Lambert Kamden Langford Jonathan Larson Brian Laughman Milan Lazorcik Jack Lee Young Alexandrea Macaluso Jerome Madison Richard, Norma & David Makanoff Domini Mallette Robert Malvica Edward Martinkovic Richard Mazzuca Sheridan McCabe Mimi McDonald Kelly Amy Mcmahel Janet Medkeff Benjamin Mickey James Miller Michael Monforte Nancy Montgomery Patricia Moran Sandy Morris Howard Morrissette Frank Mundt Marshall Munt Claire Murphy David Murray Paula Neil Paula Nelson Joseph Neustadt Casey Nilles Michael Nygaard Giotina Oikonomopoulou

Tommy Tant James Taylor Loy Taylor Phyllis Taylor Henry Thomas John Torode Collin Trebesch Wayne Van Linden Jennifer Volpe Andrew Wagner Ron Wallace Conrad Wennerberg Rebecca White Sheppard

Olivia Swancer Matthew Tacker Grace Tamez Victor Tavares James Taylor

Samantha Thomas Stephanie, Steven & Jason Tokos Marit & Morgan Toombs John Tully-Gold Lois Tyznik Alexander Utz Jake Uy

David Whiteman Brent Wiedmaier David Williams David Willson Jeffrey Wurst Matthew Young

Bert Medina Ben Meiner Bryan Miller Jonathan Miller Katie Mills Macon Mitchell Madeline Moore

Charles Vago Garret Waid Hillary Wallace Leah Wallach Adam Warren

Benjamin Weisman Alexandra Weygand Emily Wheeler & Myles Danielsen

Stephanie Green Willoughby Greer Cheney, III

Donations In Honor of: Aaron Aguayo Anthony Albano

Miyah Morales Shaine Morris Karen & Michael Murray Liam Nelson

Andrew Gross Louis Guenoit Roberto Guerra Sara Hansen Barbara Harden Johnson

Marcia Willing Denzel Wilson Anna Witiuk Andrea Witte

Mustafa Al-Gamari Micah & Stephanie Amdur-Clark

Carter Nietrzeba David Nietrzeba Dominga Noe Crista Oehler Mark Pereslete

Raquel Griffis Diane Grubbs Jack Guglielmo Hadley Gunn Creasie Hairston

Eric Ames Ezra Ames Darius Aunt Scott Avitabile

Steven O’Keefe Daniel O’Mara Vincent Passi

Tejuan Harper Philip Hayden

Spring 2018 15

NON PROFIT ORG. U.S. POSTAGE PAID RIPON, WI PERMIT NO. 100

22 MANHASSET AVENUE PORT WASHINGTON, NY 11050

Making friends. Changing Lives. Join us for the 2018 Annual Conference July 12–15 in Santa Clara, CA, for an experience of a lifetime. More details are on page 6.