30 Days and 30 Ways to Celebrate
Children's Cardiomyopathy Awareness Month
Join us this September in raising awareness of pediatric cardiomyopathy – a leading cause of sudden cardiac arrest and heart transplants in the young. During awareness month, you can help communicate that pediatric cardiomyopathy is a potentially life-threatening heart condition that deserves more attention. View the facts.
There are a variety of ways to highlight pediatric cardiomyopathy throughout the month of September. 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
- Ask members of Congress for their legislative support
- Locate an automatic external defibrillator (AED) and share its location on social media
Show & Tell
- Tell friends about a heart kid that you admire
- Inform the community about CCF's Walk for a Cure
- Review the risk factors with your child’s school and family physician
Week 1: September 1-7
Tell everyone about Children’s Cardiomyopathy Awareness Month by posting facts on pediatric cardiomyopathy and changing your Facebook and Twitter profile picture to CCF’s Awareness Month logo. To download social media images and fact sheets on the disease, click here.
Encourage family and friends to join you in wearing Team CCF t-shirts and red cure bands 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 affecting 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.
Tell friends about a heart kid that you know and about the many children who are battling this disease, regardless of age, race, or gender. Ask them to “like” CCF's Facebook page.
Distribute CCF materials to physician offices, hospitals, community centers, churches, and libraries to educate others about pediatric cardiomyopathy. To order CCF materials, click here.
Organize a team for CCF’s Walk for a Cure to be held on Sunday, September 29, in Northern New Jersey. If you are out of state, you can plan your own hometown walk or support the event as a virtual walker. To learn more about registering your heart team or walk event, click here.
Share this Fact: There are five 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, which was jointly developed with CCF.
Week 2: September 8-14
Tell friends about a heart kid that you know and the daily challenges that children with cardiomyopathy face. Ask them to “like” CCF's Facebook page.
Share this Fact: Cardiomyopathy is different from congenital heart defects. Cardiomyopathy affects the heart’s muscle and pumping function, whereas congenital heart defects affect the heart’s structure and/or vessels. For clarification, download CCF's FAQ Sheet.
Educate school staff with CCF’s cardiomyopathy materials and ensure that your diagnosed child receives appropriate accommodations and modifications with CCF’s Ensuring a Good Learning Environment school guide. To download CCF’s Cardiomyopathy School Resource Kit, 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.
Give a school presentation on cardiomyopathy to educate your child’s school staff, nurse, and students about the disease. To download CCF’s school presentation guidelines and outline, click here.
Share this Fact: Although cardiomyopathy can either be inherited or acquired through a viral infection or cancer chemotherapy, 75% of diagnosed children do not have a known cause. For more information, visit CCF's website.
Invite a local Girl Scouts or Boy Scout 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 complement the Girl Scout Journey Program.
Week 3: September 15-21
Share this Fact: A cardiomyopathy diagnosis often involves frequent doctor visits, daily medication, surgical interventions, and activity restrictions. For more information, visit CCF's website.
Share CCF posts from CCF's Facebook, Twitter and Instagram sites to remind others that a child with cardiomyopathy may have psychosocial issues related to the restrictions and uncertainties of living with a chronic and potentially life-threatening disease.
Volunteer or train to become a CCF Ambassador and assist CCF with medical outreach, patient support, and advocacy/awareness projects. To learn more about getting involved, click here.
Tell colleagues and friends that there is no cure for cardiomyopathy and there is a critical need for more research. Set up a Facebook fundraiser and ask friends to contribute to CCF’s research programs. For more information on set up, click here.
Share this Fact: A heart affected by cardiomyopathy cannot be surgically repaired, and a heart transplant may be the only option once the condition progresses to severe heart failure. For more information, visit CCF's website.
Honor someone with cardiomyopathy or recognize a physician or nurse who cares for children with cardiomyopathy by setting up a Facebook event. For more information on set up, click here.
Cardiomyopathy is the leading cause of sudden cardiac arrest in the young, and AEDs can save lives. Find an AED in your neighborhood, take a selfie, and post the photo with its location on Facebook, Instagram, and Twitter using the hashtag #protectkidshearts.
Week 4: September 22-28
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.
Learn more about “Evaluation and Diagnostic Screening in Pediatric Cardiomyopathy” from Dr. Melanie Everitt, Director of Pediatric Heart Transplant at Children’s Hospital Colorado. To participate in the Expert Q&A session, join CCF Connect here.
Participate in our CCF webinar to learn about "Transitional Care for Cardiomyopathy Patients from Pediatric to Adult Care" from Dr. Leigh Reardon, Director of the Transitional Cardiac Care Program at UCLA Mattel Children’s Hospital. To register for the webinar, click here.
Share this Fact: Knowing your family health history is critical to preventing premature death. Discuss your family’s heart health with a doctor to determine your family’s risk level for cardiomyopathy and sudden cardiac arrest. To learn about collecting information on family health, visit the Centers for Disease Control and Prevention website.
Tell friends about a heart kid that you know and how undiagnosed children with cardiomyopathy are at a higher risk for sudden cardiac arrest. Learn more.
Write a letter to your elected representative and senators asking them to make cardiomyopathy a federal and state priority. Check out CCF's legislative priorities and use these tools to become an effective advocate.
Share this Fact: Cardiomyopathy is a leading cause of heart transplants in children over one year of age. For more information, visit CCF's website.
Week 5: September 29-30
Join us today for CCF's Walk for a Cure and celebrate a successful awareness month! Support our ongoing efforts to raise awareness by registering for the walk and/or sponsoring a team. To participate, click here.
Tell friends about a heart kid that you know and remind them that we need to continue building awareness of pediatric cardiomyopathy because every affected child hopes to live a full and active life. To continue your involvement beyond Awareness Month, click here.
The Children's Cardiomyopathy Foundation is pleased to partner with the following organizations on this month-long awareness initiative. View press release.