30 Days and 30 Ways to Celebrate
Children's Cardiomyopathy Awareness Month
Join us this September in raising awareness of pediatric cardiomyopathy – the number one cause of sudden cardiac arrest and heart transplants in the young. During awareness month, you can help get the word out that cardiomyopathy is a heart condition that affects thousands of children and deserves greater attention. View the facts.
There are many fun and creative ways that you can increase awareness of pediatric cardiomyopathy. For ideas, view CCF's awareness month calendar and click on the weekly links below.
Ways to Raise Awareness
Learn & Share
- Know the signs and symptoms of cardiomyopathy
- Share facts about the disease
- Distribute CCF materials in your community
- Join Team CCF and Walk for a Cure to raise awareness
- Contact a Congressional member and ask for their legislative support
- Locate an automatic external defibrillator (AED) and share its location
Show & Tell
- Tell friends about a heart kid you admire
- Get the community involved with CCF’s Walk for a Cure
- Review the risk factors with your child’s school and family physician
Week 1: September 1
Tell everyone you know about Children’s Cardiomyopathy Awareness Month through social media and word of mouth. To download social media images and fact sheets on the disease, click here.
Week 2: September 2-8
Encourage family and friends to join you in wearing Team CCF t-shirts and red curebands to raise awareness of Children’s Cardiomyopathy Awareness Month. To purchase your CCF awareness items, click here.
Share this fact: Cardiomyopathy is a chronic condition in which the heart muscle is abnormally enlarged, thickened, and/or stiffened which affects the the heart’s ability to pump blood. When severe, the disease may lead to heart failure and/or sudden cardiac death. For more information, visit CCF's website.
Educate school staff about cardiomyopathy and ensure that your diagnosed child receives appropriate accommodations and modifications with CCF’s Ensuring a Good Learning Environment school guide. To download the school resource kit, click here.
Share this fact: There are different forms of cardiomyopathy: dilated, hypertrophic, restrictive, arrhythmogenic right ventricular, and left ventricular non-compaction. For more information, visit the American Heart Association page on pediatric cardiomyopathies.
Tell friends about a heart kid that you know or share CCF’s featured heart kid on Facebook to show that cardiomyopathy can affect any child regardless of age, race, or gender.
Join CCF for a webinar about the CCF Connect Online Community and learn how to access discussion boards, post questions for medical experts, download fact sheets and resources, and find information on cardiomyopathy specialty centers. To register, click here.
Share this fact: Cardiomyopathy is not considered a congenital heart defect. Congenital heart defects affect the heart’s structure and/or vessels, while pediatric cardiomyopathy affects the heart’s muscle and pumping function. For more information, download CCF's FAQ Sheet.
Week 3: September 9-15
Join Team CCF for our fourth annual Walk For A Cure in New Jersey on September 30. Or you can plan a walk in your hometown or support as a virtual walker. To register your heart team or walk, click here.
Distribute CCF materials to physician offices, hospitals, community centers, churches, and libraries to educate others about pediatric cardiomyopathy. To order CCF materials, click here.
Share this fact: Cardiomyopathy can either be inherited or acquired through a viral infection or cancer chemotherapy. However, up to 75% of diagnosed children do not have a known cause. For more information, visit CCF's website.
Educate your child’s school staff, school nurse, and students by giving a school presentation on cardiomyopathy. To download CCF’s school presentation guidelines and outline, click here.
Share this fact: Symptoms vary with different forms of cardiomyopathy. Common symptoms include difficulty breathing, fatigue, fainting, dizziness or light-headedness, chest pain, and heart palpitations. For more information, visit CCF's website.
Tell friends about a heart kid that you know or share CCF’s featured heart kid on Facebook to show that a child with cardiomyopathy faces daily challenges that may not be obvious to others.
Invite a local Girl Scouts or Boy Scouts troop to help raise awareness of cardiomyopathy in the community. Create heart posters, offer red apple cider, and set up an information table with CCF educational materials. Contact CCF for activities that compliment the Girl Scout Journey Program.
Week 4: September 16-22
Tell friends about a heart kid that you know or share CCF’s featured heart kid on Facebook to show that they face activity restrictions and pyschosocial issues related to living with a chronic condition.
Learn more about providing emotional support to cardiomyopathy families from Dr. Melissa Kaye Cousino Hood of C.F. Mott Children’s Hospital in Michigan. To participate in the Expert Q&A session, join CCF Connect here.
Tell friends about a heart kid that you know or share CCF’s featured heart kid on Facebook to remind others that children with cardimyopathy may have activity restrictions and some pyschosocial issues related to living with a chronic illness.
Share this fact: A cardiomyopathy diagnosis often involves frequent doctor visits, daily medication, and possibly surgical interventions and activity restrictions. For more information, visit CCF's website.
Train to become a CCF Ambassadors and assist CCF with medical outreach, patient support, and advocacy/awareness projects. For more information, click here.
Share this fact: A heart affected by cardiomyopathy cannot be surgically repaired, and a heart transplant may become necessary when the heart progresses to severe heart failure. For more information, visit CCF's website.
Tell friends about a heart kid that you know or share CCF’s featured heart kid on Facebook to remind others that a child with cardiomyopathy must deal with the uncertainties of the disease on a daily basis.
Week 5: September 23-29
Share this fact: Cardiomyopathy is leading cause of heart transplants in children over one year of age. For more information, visit CCF's website.
Review the sudden cardiac arrest risk factors with your family physician, child’s pediatrician, or school nurse to determine if your family should be monitored. Recognizing the risk factors associated with cardiomyopathy is the first step to prevention. To download CCF’s risk factor sheet, click here.
Cardiomyopathy is the leading cause of sudden cardiac arrest in the young. Find an AED in your neighborhood, take a selfie, and post the photo with its location on Facebook, Instagram, and Twitter with @ccfheartkids. For details on CCF's AED scavenger hunt, click here.
Tell friends about a heart kid that you know or share CCF’s featured heart kid on Facebook to educate others that many children with cardiomyopathy remain undiagnosed and at risk for sudden cardiac arrest.
Write a letter to your elected representative and senators asking them to make cardiomyopathy a legislative priority and sponsor the Cardiomyopathy Health Education, Awareness, Research, and Training in the Schools (HEARTS) Act. To send a letter, click here.
Tell friends about a heart kid that you know or share CCF’s featured heart kid on Facebook to remind others that every child with cardiomyopathy hopes to live a full and active life.
Share this fact: Knowing your family cardiac history is critical to preventing premature death. Discuss your family’s heart health with a doctor to determine your family’s risk for cardiomyopathy. To learn more, visit the Centers for Disease Control and Prevention site.
Week 6: September 30
Join us today for CCF’s Walk for a Cure and celebrate a successful awareness month! Support our ongoing efforts to raise awareness and research funds by registering for the walk or sponsoring a team. To participate, click here.
The Children's Cardiomyopathy Foundation is pleased to partner with the following organizations on this month-long awareness initiative. View press release.