Celebrating Life!

Mended Hearts Conference Celebrate Life!

 

By Kimberly Turner

Approximately 350 members, friends, industry partners and exhibitors gathered in beautiful San Antonio, Texas, to “Celebrate Life!” during the 66th annual Mended Hearts and Mended Little Hearts National Education and Training Conference and the 5th annual Mended Little Hearts CHD Symposium.

For Mended Little Hearts coordinators, this 12th annual leadership training event brought them right back to the city where their leadership training started in 2007.

The entire event, which ran from July 14 to 18, featured exceptional expert speakers from around the country, social events and ample opportunities for both education and personal connection.

Mended Hearts

“It felt like a family event,” said conference first timer Johnny Lemucchi of
Mended Hearts Chapter 351 in Whittier, California. “It was so neat to hear everyone’s stories. We got so much out of it.”

His sentiments were shared by attendees from across the nation who reconnected with old friends and made new ones.

A host of knowledgeable speakers spoke about topics ranging from cardiac rehab and discharge class training to innovations in cardiovascular therapy and overcoming barriers to care.

Highlights Galore

There were too many special moments and educational sessions to list here, but one of the favorites included a town hall meeting that brought experts together to discuss how to improve access to care, a topic that is a priority for Mended Hearts!

The panel included a caregiver/ parent, patients and pharma reps who answered questions about the biggest barriers to care, how Mended Hearts can improve access to care and why insurance companies are sometimes not willing to allow doctors to make the right decision for patients.

Simone Nichols-Segers from the National Multiple Sclerosis Society shared how they have been successful in Texas and New Mexico in passing legislation to protect the patient.

Dr. Janet Hays of UT Health Sciences Center at San Antonio discussed heart attack symptoms and nuclear stress tests. Dr. Robert Chilton, also of the
UT Health Sciences Center, discussed cardiovascular disease and diabetes.

Kimberly Cauthon of the Feike School of Pharmacy participated in an “Ask the Pharmacist” workshop, which participants called “extremely helpful” and “fun and engaging.”

During Monday’s luncheon, Dr. S. Hinan Ahmed of UT Health Science Center at San Antonio discussed transcatheter aortic valve replacement (TAVR), the latest therapy for aortic stenosis, and TAVR patient Pete Brake
of Corpus Christi, Texas, gave a dynamic and entertaining testimonial of his TAVR experience. Brake reiterated his gratitude for the new start he was given after his procedure, saying he had a new lease on life. “I bought a home with a yard,” he smiled. “I hate to mow a yard, but I love that I can!”

Rejuvenating a Chapter

Al Voss, assistant regional director of the Southern Region, led an inspiring session on chapter rejuvenation along with Judy Himes of Phoebe Putney Memorial Hospital. They discussed the importance of the relationship between hospitals and Mended Hearts chapters and outlined how his chapter overcame 34 obstacles. Their session got rave reviews from
attendees, who had comments such as “no matter what problem your chapter may have, it was covered” and “this was the most helpful workshop.”

The chapter improved its communication to bring key people together from Mended Hearts and the hospital. They addressed their concerns and developed written policies and procedures approved by hospital leaders.

Thanks, in large part to the techniques he discussed, Chapter 165 out of Southwest Georgia overcame issues facing both the chapter and their partner hospital, to win this year’s President’s Cup.

Between 2016 and 2017, the chapter eliminated all 34 trouble spots, increased trust between the chapter and the hospital, and increased the hospital’s funding and support of the chapter. Meeting attendance increased, as did the number of accredited visitors and member participation in events.

The number of individual patients visited increased from 291 to 2,837
in just one year’s time. In-room, telephone and online visits all increased substantially; the total visits went from 618 to an incredible 10,021! The chapter also increased membership by 34 percent.

The incredibly useful session also offered 23 great ideas that any chapter could use to increase membership — from posting your chapter meetings in newspapers to setting up displays at health fairs.

First Timers

Our large class of first timers enjoyed their graduation on Thursday evening, having made many new friends during their time at the conference. One member of the group, Johnny Lemucchi of Mended Hearts Chapter 351 in Whittier, California, discussed the 203 days he spent with an artificial heart before his transplant.

Doctors originally told him there was nothing they could do and “told
my family it was pretty much over.” But thanks to the persistence of one doctor, he was sent back to the transplant center for an artificial heart just as his organs began to fail.

Today, he is on the board of directors of his chapter and his visits change lives. “I visited with someone whose only choice was an artificial heart,” he recalls. “I went to talk to him at the hospital, and he said it was too noisy, too inconvenient for his family. He had given up on life. I said, ‘Yeah, it is noisy, but that noise is the sound of life. When I walked into a store, you could hear me, but I was there!” The man ended up getting the artificial heart and has a new chance at life.

At the conference Lemucchi made many powerful connections but perhaps none as powerful as his meeting with Dr. Jerome Riebman of Amgen.

Lemucchi explains: “He was one of the first doctors to teach doctors how to implant the artificial heart. I said, ‘Thank you.’ And he said, ‘What for’ I said, ‘For saving my life. Without you, I wouldn’t be here today.’ It got emotional.”

MLH CHD Symposium

Heart families from 25 states from Cali- fornia to Connecticut attended the fifth annual CHD Symposium on July 14 for friendship, support and education.

This year, exhibitors were given five minutes on Facebook Live to talk about their innovations on the Mended Little Hearts National Organization Facebook Page. This new feature was a hit with those who could not attend the CHD Symposium but wanted more information on innovations for themselves and their children.

If you missed them at the time, you can still visit the page to see many of those video sessions. Together, the conference and Symposium videos have been viewed nearly 23,000 times!

Straight From My Heart

During his “Straight From My Heart” keynote address, 13-year-old actor Max Page (of The Young and the Restless, Prime Suspect and the tremendously popular 2011 Volkswagen Super Bowl commercial where he played a mini Darth Vader) delivered advice for parents of kids with CHD and insights into what it is like for young heart warriors.

“My goal today is to be super honest and let you in on what kids like me really go through and what we think about,” said the actor, who has had 13 heart surgeries starting when he was just three months old. “I’ve learned over the years to focus forward. During the tough times, I keep my thoughts to the future.”

He advised parents to set a tone of positivity, to help kids stay distracted, to be understanding of mood swings, to teach kids healthy coping mechanisms and to stay strong.

He also implored parents to “toss out the bubble wrap,” saying, “Let us run, swim, play, paint, go to school, go to camp, go with friends. Let us live our lives the best we can. Don’t put limits on us that aren’t medically necessary. It must be frightening, but please let us live like other kids.”

He finished his powerful keynote by stressing that “CHD is nobody’s fault. As parents, you did not do anything to make this happen. You also can’t fix this on your own. Don’t feel guilty. Help us get the best care and teach us how to care for ourselves as we grow up. Let me repeat: This is not your fault.”

Innovations in CHD Care

Another highlight was the panel on medical innovations featuring Dr.
Daniel Nento of Children’s Hospital of San Antonio, Dr. Rolando Zamora of Pediatric Cardiology Associates in San Antonio, Dr. Steven Zangwill of Phoenix Children’s Hospital and Dr. Ryan Moore of Cincinnati Children’s Hospital Medical Center.

These knowledgeable experts touched on topics such as the relationship between providers and families, ethical challenges in transplantation, collaboration among the pediatric heart transplant community, what the future of CHD care looks like and innovations in medical care, including
the use of virtual reality in treating CHD.

Dr. Zangwill discussed how mechanical circulatory support, primarily pre-transplant, can help children who are high risk, allowing them to not only
get the transplant they require, but to be in a healthier state when they do.

“I think overall, it was a really great, balanced approach for families,” said Dr. Zangwill of the Symposium as a whole. “There was a good mix of practical tips and tricks for problems that you may have had or may anticipate having in the future, and the more medical, complex information was delivered in, I think, a family-centered way. There was also a fair amount of opportunity for interaction.”

Other Highlights

Outstanding speakers from across the nation continued sharing their expertise for heart families with sessions on topics such as “Neurodevelopment, Psycho-Social and Emotional Issues Faced by CHD Families,” which was selected as a top-priority of CHD parents, and “Development of the Child and Teen.”

There was a huge demand for the popular “CHD According to Me” panel, which focused on the emotional wellbeing of CHD patients and families. The panel offered a wide variety of perspectives thanks to a diverse group of panelists that included a psychologist, social worker, mom, dad, angel parent and adult with CHD. The emotional and honest discussion was a high point for many attendees.

MLH National Bereavement Chair Sharee McCoy (who you can learn more about in this issue’s “Heart Hero” column on page 8) hosted a breakout session for angel parents. CHD angels were also remembered and honored at the Symposium with a touching photo collage tribute.

MLH National Education & Training Conference

Mended Little Hearts leaders enjoyed two valuable days of practical information to help them lead their local groups. Sessions offered advice on topics such as supporting families in the age of technology, being an effective spokesperson, starting an Angel Program in your group, working with hospitals, hosting effective fundraising and awareness events, finding community resources and supporting teens and young adults with CHD.

Breakout sessions walked attendees through how to create annual reports, how to budget and manage finances and how to apply for grants and sponsorships.

Christian Bove, who is the crisis communications director for USAA
San Antonio (but was not speaking on behalf of that organization at this event), discussed working with the media to improve CHD awareness. He advised the audience to get to know the media, understand the importance of storytelling and leverage relationships with the media. He also offered tips for preparing for a media interview and promoting events and organizations when the media can’t make it.

“The crowd was very engaged and asked some great questions,” he said. “I was honored to be asked to present at the conference.”

Jon Fitzsimon of Inspired Race Events — who called the entire event “top notch” — hosted a session on great fund- raising events, offering tips for 5Ks and suggesting other fun possibilities. His book, How to Host a Race, offers similar advice in ebook format and is available on Amazon now. The session ended with a Q&A and brainstorming session on unique fundraising options.

Thank you!

As always, this wonderful week of connection and education would not have been possible without our hard-working conference committee and our vital sponsors.

Mended Hearts would like to thank our sponsors: Amgen, Astellas Pharma, AstraZeneca, Boehringer Ingelheim and Lilly Alliance, Edwards Lifesciences, Novartis Pharmaceuticals, Sanofi Regen- eron Alliance and Roche.

Mended Little Hearts is extremely grateful for sponsors Edwards Lifesciences and Medtronic as well as our exhibiting sponsors: Admedus, Alderson Family Foundation, Asklepion, Berlin Heart, Children’s Hospital of San Antonio, Cincinnati Children’s Hospital, Dell Children’s Hospital, Prolacta, TAI Diagnostics and Texas Children’s Hospital.

We also want to thank every Mended Hearts member, Mended Little Hearts member and friend who took the time to come celebrate life with us! See you next year!

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