The 63rd annual Mended Hearts and Mended LittLe Hearts Education and Training Conference, which took place June 24 – 28 in sunny Florida, drew in nearly 300 attendees from across the nation. The conference is designed to educate and train volunteers, provide the latest cardiovascular health information, and offer networking opportunities.
If you missed the event, you’ll appreciate these 12 highlights from the conference. And if you were there, then you’ll enjoy the recap of Mended Hearts and Mended Little Hearts achievements, health information and tips for staying healthy.
These dozen takeaways are a small representation of the many educational presentations at the conference. We appreciate all of our speakers who shared their knowledge with our members.
During the Annual Meeting General Session, attendees learned that 2014 brought its share of challenges. Mended Hearts lost nine chapters and gained four (Mended Little Hearts lost three and gained several). And, for the first time in our organization’s history, in 2014 we cut financial ties to larger organizations that were partially subsidizing us.
Still, Mended Hearts leaders say we’re plowing ahead with plans for growth. Speakers at the General Session explained how Mended Hearts will work toward increasing membership by:
1. Growing our number of sponsors. Mended Hearts already has a number of loyal sponsors, and we plan to expand this by partnering with consumer goods markets.
2. Working with hospitals at the system level, so that we gain access to multiple hospitals.
3. Expanding donations to 85 percent of revenue, which is commensurate with the national average among non-profit organizations.
4. Attracting younger heart patients, as well as adult CHD patients, heart failure patients and even those with chronic obstructive pulmonary disease (COPD patients are at high risk for heart problems).
5. Creating a Patient Advocacy Network, which will be sponsor-supported and allow heart patients to connect virtually through Mended Hearts. (Read more about this new network in News from National, page 5.)
6. Making it easier to conduct visitor training. Members wanting to become visitors can now do their training online, at their convenience. Chapters can also conduct online group training.
Michele Packard-Milam, CAE; Gus Littlefield; immediate past president; Donnette Smith, president; Lynn Berringer, former vice-president; Dale Briggs, former treasurer; and Andrea Baer, MLH vice president, each presented during the general session
Together, Mended Hearts and Mended Little Hearts have nearly 20,000 members, including 4,000 trained, accredited visitors. That’s a lot of people to help care for adult and pediatric cardiology patients. But how can we keep everyone inspired?
Pamela Landworth has a formula for inspiring volunteer leadership, which she shared at the conference. As president of Give Kids the World, a non-profit organization that helps fulfill the wishes of children with life-threatening illnesses, she encourages and inspires nearly 15,000 active volunteers. Her formula is simple:
Training + Communication + Care = Inspired volunteers
Training includes a thorough orientation to the organization, as well as teaching new volunteers the Give Kids the World core values and operating principles. Communication techniques include volunteer recognition, newsletters, social media interaction and town hall-style meetings. Care includes providing a fun gathering place, celebrating Volunteer Appreciation Week and even hosting special Pancake Days.
“If you can do these,” Landworth said at the conference, “your volunteers will have pride in your organization. And if they have pride, they will do anything.”
In the 20 Tried & True Ways to Spice Up Your Chapter session, which was moderated by Cathy Byington, Regional Director of the Midwest Region and President of Chapter 214 – Sioux Falls, South Dakota, several members contributed ideas on how to keep chapter meetings exciting.
Have a drawing for prizes. Give members a raffle ticket at the beginning of the meeting. The member keeps one part of the ticket stub, while the other part goes into a bowl. At the end of the meeting, the leader can draw a winning ticket from the bowl. Prizes can include things like movie passes and gift cards. –Idea submitted by Lupe Torres, Chapter 331, Anaheim, Calif.
Host a Mystery Soup contest. Have four members bring a crock-pot of homemade soup. Provide small cups to attendees to try all four soups and vote on their favorites. The person who made the winning soup will get a prize. Also, don’t put a name on the soups. Ask members to guess the names of each soup. If anyone can name all four, they receive a prize. –Idea submitted by Bobbi Cecco, Chapter 140, Bergen-Passaic/ Hackensack, N.J.
Give out special seeds for heart patients. Several seed companies sell seeds in unlabeled packets. Order them for special events and use them as prizes. The winner can plant the seeds, and in several weeks or months, determine what they produce. –Idea submitted by Shirley Kell, Chapter 230, Pontiac, Mich.
“Sleep apnea is my No. 1 nemesis,” Dr. Ashish Gupta, M.D., told attendees at a luncheon presentation about living with heart failure, which was a joint program of Mended Hearts and the American College of Cardiology. He discussed how sleep apnea causes patients to stop breathing during their sleep and limits blood flow to the brain. This can cause problems with blood pressure and worsen symptoms of diabetes.
Currently, the most-recommended treatment for sleep apnea is a C-Pap machine, Dr. Gupta explained. There are a few patients who may benefit from seeing an ENT for uvulaplasty, or by using prosthetics to lift the jaw while sleeping.
Dr. Gupta also stressed the team approach to managing heart failure. “Get to know your pharmacist,” he said, and encouraged the audience to also work closely with nurse practitioners and dietitians in their cardiologist’s office.
During his presentation, Dr. Gupta encouraged attendees to take advantage of tablet and smartphone apps, as well as websites, to help them keep track of health needs. One website in particular, www. CardioSmart.com, offers an app that reminds users when to take their medications.
This was the main message from interventional cardiologist Pradip Jamnadas, M.D. During his presentation, Lifestyle Changes After a Heart Event,” he used layman’s terms to describe how plaque forms in arteries and leads to trouble. He likened plaque buildup to pimples on the surface of the skin.
“Eventually, [the plaque] ruptures in the wall of the artery. Plaque that ruptures in the artery is like a pimple that ruptures on your skin,” he said. He followed that up on a lighter note: “Call me a coronary cosmetologist.”
Dr. Jamnadas didn’t mince words when he talked about changing eating habits after a heart attack. “Let’s not pussyfoot around this,” he said. “The trouble with this is that so few physicians will tell their patients to eat a plant-based diet.” If you’re not a big fan of the way vegetables taste, Dr. Jamnadas had a straightforward, if less-than-compassionate, response: “I’m not asking you to taste it. I’m asking you to swallow it,” he joked.
“Making sure you sleep well, this is a lifestyle change you should make,” Dr. Jamnadas said. “You age much faster when you don’t get delta sleep at night.” (Delta sleep is the deepest stage of sleep.)
The correlation between atherosclerosis and risk factors begins very early, according to Dr. Ralph Vicari, M.D., vice president of the National Lipid Association, associate professor of cardiovascular medicine at the University of Central Florida College of Medicine. “By the time patients have identifiable risk factors, they are no longer risk factors; they are subclinical disease,” he said. (A subclinical disease is an illness that has no recognizable clinical findings.)
Dr. Vicari said that all children should be screened for cholesterol once between the ages of 9 to 11, and again between the ages of 16 to 18, a recommendation supported by the American Academy of Pediatrics. Why? Because if a child has risk factors in childhood, there is an increased likelihood that he or she will develop heart disease as an adult.
Parents of children with congenital heart disease who have restrictions or limitations on activity should request that their child have a 504 plan, unless they already have an Individualized Education Plan (IEP). This plan helps students who have a physical or mental impairment that limits a major life activity, such as learning. A 504 plan lists how an individual child’s specific needs are met through various accommodations, modifications and services. “We’re not giving [students with CHD] a leg up,” said school program specialist Lorilynn V. Bowie, who works with Marion County Public Schools. “We’re leveling the playing field.”
If your child receives special education, he or she needs an Individualized Education Plan, which provides a higher level of support than a 504 plan. With an IEP, goals are outlined for the student and measured throughout the school year.
Dawn Silverman, a licensed mental health counselor and mother of a 6-year-old son who has hypoplastic left heart syndrome, said that learning your child has a CHD is equivalent to loss — the loss of a perfect child. “You have a choice toward redefining that loss,” she said. “You can’t control medically what happens to your child, but you can control how you react to it.”
If you talk about your child’s CHD with other parents in social media, it can be easy to get wrapped up in conversations about whose child has the worst case. “It almost feels like a comparison — like my child is sicker than yours,” said one mother during a session about the emotional side of CHD. “When parents act that way,” Sliverman said, “there’s something emotionally going on. You’re not going to change their minds to get them out of that victim mentality.” Her recommendation? Don’t join in the conversations.
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