For some people, social media sites like Facebook are simply a place to share funny videos and family vacation photos. But these sites and other online platforms serve a vital role in the congenital heart defect (CHD) community. It is within these online groups that scars are bared, connections are made, loved ones are remembered, awareness grows and money is raised.
For the past several years, Mended Little Hearts has taken to the web full force. In February each year, there is a trio of powerful online events: the Roar ‘n Run Virtual Charity Race, the Rock Your Scar photo contest (both in their third years), and the second-annual Candlelight Vigil in honor of “heart angels”- children who have lost their lives to CHD-related causes.
“All of these events are so important in creating community,” says Jodi Lemacks, National Program Director for Mended Little Hearts. “Families with children who have CHD, adults living with CHD, and especially families who have lost children, often feel so isolated. We want them to know that we are here, and going on this hard journey together is much better than going it alone.”
Lemacks says her son, Joshua, who is almost 13 and has a congenital heart defect, is among those who have benefitted from connecting with others via the Rock Your Scar social media photo contest, which empowers teens, tweens and others living with CHD and is one of the only national CHD awareness campaigns. “I know for my son, it means so much to see other teens and young adults, especially guys, embracing their CHD.”
Actress Valerie Azlynn, a CHD survivor, has put her support behind Rock Your Scar and MLH in the name of raising awareness. “She has a real passion for the teens, especially teen girls,” Lemacks says. “As a CHD survivor herself, she really understands what it’s like to have scars — both physically and emotionally.”
In addition to making connections, Roar ‘n Run Virtual Charity Race, which took place during CHD Awareness Week, Feb. 7-14, is aimed at raising money for MLH support programs that directly affect families. “This support is vital to our mission,” Lemacks says.
“Raising money is not easy for nonprofits. Everyone has a good cause,” she says. “Social media has allowed us to let others know about all of the great things we do so they can help us do them. We rely on these donations to provide services for families. The majority of our income is in donations. We are thankful for everyone who is willing to support us, even if it’s $5 or $10. It helps!”
Lemacks says the biggest fundraising team for Roar ‘n Run was able to very effectively spread the word and raise $3,420 in honor of “Sweet Angel Ryan,” who passed away of CHD. “What a huge way for the family to keep this baby alive,” she says. “Not only that, but his life will affect hundreds to thousands of others as they receive support from Mended Little Hearts when they are in crisis and need it the most.”
Raising awareness is another important goal of the virtual events. “People still are so unaware of congenital heart disease and its impact on families and on society,” she says.
The Candlelight Vigil, held on Feb. 10 via social media, brought much-needed attention to the heartbreaking truth of CHD-related deaths among children adults with the disease. “People forget that these families need support just as much, if not more, than other CHD families. The angel families often worry that their kids will be forgotten. It is so sad.
“I am very proud of Jen DeBouver, who has really expanded our bereavement program and made sure these precious children are not forgotten,” Lemacks says.
Staying connected online goes far beyond MLH’s virtual events. Social media plays a crucial role in the ongoing support offered by MLH groups across the nation. One group that’s particularly active in social media is MLH of Milwaukee, which has nearly 200 members in a closed group on Facebook.
“We use Facebook to keep families informed of CHD events, research and awareness activities,” says Amy Randall, MLH of Milwaukee co-coordinator. Families also post about upcoming appointments or hospital stays. Our group is very supportive, offering encouragement and hope.”
Randall says that all potential new members are screened to ensure they have a connection to the CHD community, so that members feel comfortable sharing health information in this private group. Without this online community, many CHD families in the area might not otherwise have been able to connect with one another.
“Even though our group meets monthly, not everyone is able to make the monthly meetings,” Randall says. She credits MLH of Milwaukee’s secretaries for doing a great job of posting meeting notes in the Facebook group so everyone is informed.
“Facebook has given our group the ability to have small touch points with many families in order to offer support,” she says. “Some families live 45 minutes to an hour outside of our metro area, and Facebook helps us to connect with everyone.”
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