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 among the young. During awareness month, you can help us get the word out that cardiomyopathy is a serious heart condition that affects thousands of children. 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.
3 Easy 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 know or admire
- Get the community involved with CCF’s Walk for a Cure
- Thank someone who is educating others about cardiomyopathy
Week 1: September 1-2
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 red curebands to call attention to Children’s Cardiomyopathy Awareness Month. Get family, friends, and colleagues to join you in your awareness initiative. To purchase your CCF awareness items, click here.
Week 2: September 3-9
Share this fact with #KnowYourHeart. 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 through the body. When severe, the disease may lead to heart failure and/or sudden death. For more information, visit CCF's website.
It’s back to school time! Educate school staff about cardiomyopathy 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 CCF's featured heart kid on Facebook to show that cardiomyopathy can affect any child regardless of age, race, or gender.
Share this fact with #KnowYourHeart. 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.
Distribute CCF pamphlets and materials to physician offices, hospitals, community centers, churches, and libraries to educate others on the disease. To order CCF materials click here.
Share this fact with #KnowYourHeart. Pediatric cardiomyopathy is not 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.
Share this fact with #KnowYourHeart. Symptoms vary with different forms of cardiomyopathy. Common symptoms include difficulty breathing, fatigue, exercise intolerance, fainting, dizziness or light-headedness, chest pain, heart palpitations and some localized swelling. For more information, visit CCF's website.
Week 3: September 10-16
Join Team CCF for our third annual Walk For A Cure on September 17th. Walk with us in New Jersey, plan a walk in your hometown, or support as a virtual walker. For more information and to register your heart team, click here.
Share this fact with #KnowYourHeart. Cardiomyopathy can either be inherited or acquired through a viral infection or cancer chemotherapy. Not all is understood about the genetic makeup of the disease, and up to 75% of those diagnosed do not have a known cause. For more information, visit CCF's website.
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 with #KnowYourHeart. While there are surgical and medical treatments to improve quality of life, a child’s damaged heart cannot be surgically repaired in most cases. A heart transplant becomes necessary when medical management cannot prevent the heart from progressing to heart failure. For more information, visit CCF's website.
It’s Thank You Thursday! Send a #thankyouthursday to someone helping to raise awareness of pediatric cardiomyopathy or is helping a family affected by the disease. This could be your state representative, a nurse, social worker, doctor, or a parent advocate.
Share this fact with #KnowYourHeart. Cardiomyopathy remains the leading cause of heart transplants in children over one year of age. 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 everyday challenges that may not be obvious to others.
Week 4: September 17-23
CCF's Walk for a Cure is today! Support our efforts to raise awareness and funds for pediatric cardiomyopathy by registering with a heart team or making an event donation. To register or donate, click here.
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 cardimyopathy may have activity restrictions and some pyschosocial issues related to living with a chronic illness.
Share this fact with #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.
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.
Learn more about developments in research and treatment from Dr. Jeff Towbin, a renowned pediatric cardiomyopathy specialist from Le Bonheur Children’s Hospital. This educational webinar is open to anyone interested in the disease. To register, click here.
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 and his or her family must deal with the uncertainties of the disease on a daily basis.
Sudden cardiac awareness month is around the corner. Find an AED in your neighborhood, take a selfie, and post the photo with its location on Facebook, Instagram and Twitter with @ccfheartkids. To learn more about CCF's AED scavenger hunt, click here.
Week 5: September 24-30
Talk to your family physician, child’s pediatrician, or school nurse about cardiomyopathy, and go over the risk factors for sudden cardiac arrest. Recognizing the risk factors associated with cardiomyopathy is the first step to prevention. To download CCF’s risk factor sheet, click here.
Share this fact with #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. For more information about cardiomyopathy, visit the Centers for Disease Control and Prevention website.
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.
Tweet your elected officials and ask them to make protecting kids hearts a priority.
Share this fact with #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 determine your family’s risk for cardiomyopathy. To learn more about recording your family’s heart history, Centers for Disease Control and Prevention site.
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 for cure and a future where they can live a full and active life.
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.
The Children's Cardiomyopathy Foundation is pleased to partner with the following organizations on this month-long awareness initiative. View press release.