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 children. You can help us get the word out that heart disease affects kids too, and cardiomyopathy is a disease that deserves wide spread attention. View press release.
In three easy ways, you can increase awareness of pediatric cardiomyopathy throughout the month of September.
Learn & Share
- Know the signs and symptoms of cardiomyopathy to help identify children who may be at risk for a sudden cardiac arrest.
- Share facts about the disease on social media to educate others.
- Give CCF materials to physician offices, hospitals, community centers, churches and libraries.
- Join Team CCF and Walk for a Cure to raise awareness and funds for research.
- Write to a member of Congress and ask for their support of life-saving legislation to protect kids with cardiomyopathy.
- Take a photo of an automatic external defibrillator (AED) and share its location on social media to help prevent another sudden cardiac death.
Show & Tell
- Tell friends about a heart kid you know or one of CCF’s featured hearts kids.
- Get the community involved with CCF’s Walk for a Cure.
- Post a #thankyouthursday about someone you know who is helping to educate others about cardiomyopthy.
Week 1: September 1-3
Tell everyone you know that September is about children with cardiomyopathy. Change your Facebook or Twitter profile picture to the Children's Cardiomyopathy Awareness logo. To download logo, Facebook banner and Twibbon, click here.
Wear Team CCF t-shirts and curebands to start a conversation about cardiomyopathy and generate interest for our September 18th Walk for a Cure. Get family, friends and colleagues to join you in your awareness initiative this month. To purchase your CCF awareness items, click here.
Tell friends about a heart kid that you know, or share today’s featured heart kid on CCF's Facebook page to show that behind the smile of a child with cardiomyopathy there is a chronic and potentially life-threatening heart disease.
Week 2: September 4-10
Share this fact: #KnowYourHeart Cardiomyopathy is a chronic condition in which the heart muscle is abnormally enlarged, thickened and/or stiffened affecting the ability of the heart to pump blood through the body. The disease can present in different forms and may, in severe cases, lead to heart failure and/or sudden death. For more information, visit CCF's website.
It’s Back to School time! Help educate school staff about the disease and ensure your child receives the appropriate accommodations and modifications with CCF’s school resource kit. To download "Ensuring a Good Learning Environment – A Cardiomyopathy School Resource Kit," click here.
Tell friends about a heart kid that you know, or share today’s featured heart kid on CCF's Facebook page to show that cardiomyopathy can affect any child regardless of age, race or gender.
Share this fact: #KnowYourHeart 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.
Distribute CCF pamphlets and Walk for a Cure materials to physician offices, hospitals, community centers, churches and libraries to educate others on the disease and encourage them to join Team CCF for our Walk for a Cure on September 18. For more information about the event, click here.
Share this fact: #KnowYourHeart Symptoms can vary with different types of cardiomyopathy. Common symptoms include difficulty breathing, fatigue, exercise intolerance, fainting, dizziness or lightheadedness, chest pain, heart palpitations, and swelling in the ankles, feet, legs, abdomen and neck veins. For more information, visit CCF's website.
Share this myth buster: #Mythbuster Pediatric cardiomyopathy is a congenital heart defect. The fact is congenital heart defects (CHD) and pediatric cardiomyopathy (PCM) both affect the heart, but CHDs affect the heart’s structure and/or vessels, while PCMs affect the heart’s muscle related to pumping. For more information, download CCF's FAQ Sheet.
Week 3: September 11-17
Educate your child’s school staff, school nurse and fellow parents by giving a school presentation on cardiomyopathy and distributing CCF’s educational materials. To download CCF's school presentation guidelines and outline, click here.
Share this fact: #KnowYourHeart Cardiomyopathy in children can either be inherited genetically through one or both parents 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.
Tell friends about a heart kid that you know, or share today’s featured heart kid on CCF's Facebook page to show that behind the smile of a child with cardiomyopathy there are everyday challenges that affect him/her and his/her family.
Join Team CCF for our second annual Walk for a Cure on Sunday, September 18th. Come walk with us in New Jersey, plan a walk in your hometown or support as a virtual walker. For more information about the event and to register your heart team, click here.
It’s Thank You Thursday! Send a #thankyouthursday to someone who has helped to raise awareness of pediatric cardiomyopathy or is helping a cardiomyopathy family. This could be your state representative for supporting life-saving legislation, a nurse or doctor caring for a heart kid in the hospital, or a parent advocate representing the needs of other cardiomyopathy families.
Share this fact: #KnowYourHeart Cardiomyopathy remains the leading cause of heart transplants in children over one year of age, and the percentage of children with cardiomyopathy receiving a heart transplant has not declined in the past 10 years. For more information, visit CCF's website.
Invite a local Girl Scouts or Boy Scouts troop to help raise awareness. Create some heart posters, offer red apple cider and set up an information table with CCF educational materials. Contact CCF for activity ideas that compliment the Girl Scout Journey Program.
Week 4: September 18-24
CCF’s Walk for a Cure is today! It’s not too late to support our efforts to raise awareness and funds for pediatric cardiomyopathy research. To support your favorite heart team or to make a donation, click here.
Share this fact: #KnowYourHeart A cardiomyopathy diagnosis often involves frequent doctor visits, daily medication, and possibly surgical interventions and activity restrictions. For more information, visit CCF's website.
Learn more about pediatric cardiomyopathy from Dr. Elfriede Pahl, a pediatric cardiologist at the Ann & Robert H. Lurie Children's Hospital of Chicago. This educational webinar will be held 2 p.m. CST/ 3 p.m. EST and is open to anyone interested in the disease. To register, click here.
Tell friends about a heart kid that you know, or share today’s featured heart kid on CCF's Facebook page to remind others that a child with cardiomyopathy must deal with restrictions from competitive sports and certain school accommodations.
Share this myth buster: #Mythbuster Surgery can repair the heart and cure cardiomyopathy. The fact is there are surgical and medical treatments that can relieve symptoms, but there is not an option to repair the damaged heart or stop the progression of the disease. For more information, visit CCF's website.
It’s Follow Friday! Tweet a #FF of someone you follow who is making a difference for cardiomyopathy heart kids and tag CCF @CCFheartkids.
Share this fact: #KnowYourHeart Cardiomyopathy is the leading cause of sudden cardiac arrest (SCA) in the young. The Centers for Disease Control and Prevention estimates that every year 2,000 people younger than 25 will die of SCA in the U.S. To learn about legislation that protects at-risk children, click here.
Week 5: September 25-30
Talk to your family physician or child’s pediatrician about cardiomyopathy and go over the risk factors for sudden cardiac arrest. Recognizing the risk factors associated with cardiomyopathy can help prevent sudden cardiac deaths. To download CCF’s risk factor sheet, click here.
SCA is the top cause for death on school property. Make your voice heard and urge your elected senators and representatives to cosponsor the SAFE PLAY Act, which includes provisions for protecting student athletes from sudden cardiac death. To send a personalized letter to your legislators, click here.
Tell friends about a heart kid that you know, or share today’s featured heart kid on CCF's Facebook page to remind others that every child with cardiomyopathy hopes for cure and a future where they can live a full and active life.
Share this fact: #KnowYourHeart Knowing your family cardiac history is critical to preventing premature death. A discussion of your family’s heart health with your family doctor or pediatrician can help assess your family’s risk for cardiomyopathy. To learn more about recording your family’s heart history, visit the Centers for Disease Control and Prevention site.
To highlight the importance of automatic external defibrillator (AED) accessibility, find an AED in your neighborhood, take a selfie and post the photo with its location on Facebook, Instagram and Twitter @ccfheartkids. To participate in CCF’s AED scavenger hunt, click here.
Congratulations – you are now a Cardiomyopathy Awareness Ambassador! We hope that you will continue spreading the word about pediatric cardiomyopathy beyond September and throughout the year.