Children's Cardiomyopathy Foundation
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Celebrate Children's Cardiomyopathy Awareness
Month in September

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. In every state, city and neighborhood there is most likely a child with cardiomyopathy — one diagnosed today and one to be diagnosed tomorrow. You can help us get the word out that heart disease isn't just about adults; it affects kids too.

In three easy ways, you can increase awareness of pediatric cardiomyopathy throughout the month of September. You can view each week’s activities by clicking on the below links or view the complete awareness activity calendar by clicking here.

Learn & Share

Learn

•  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.

Take Action

Take Action

•  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

Show & Tell

•  Tell friends about a heart kid you know or one of CCF's
    featured heart kids.
•  Get the community involved with CCF’s Walk For A Cure.
•  Post a #thankyouthursday (Thank You Thursday) about
    a member of Congress who is working to keep children
    with cardiomyopathy safe.

Click on the below links to view each week's awareness activities.

Week 1: September 1-5
  • September 1 Learn
    Learn & Share
    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.
  • September 2 Learn
    Learn & Share

    Share this fact: #KnowYourHeart Pediatric 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.
  • September 3 Take Action
    Take Action

    Join Team CCF for our first annual Walk For A Cure. Come walk with us in New Jersey, plan a walk in your hometown or support as an event sponsor or virtual walker. For more information about the event and to register your heart team, click here.
  • September 4 Show & Tell
    Show & Tell

    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 cardiomyopathy child there is a chronic and potentially life-threatening heart disease.
  • September 5 Learn
    Learn & Share

    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.
Week 2: September 6-12
  • September 6 Learn
    Learn & Share

    Share this fact: #KnowYourHeart Cardiomyopathy can occur in any child regardless of age, race, gender or socioeconomic background. For more information, visit CCF's website.
  • September 7 Take Action
    Take Action

    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.
  • September 8 Show & Tell
    Show & Tell

    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 cardiomyopathy child there is a chronic and potentially life-threatening heart disease.
  • September 9 Learn
    Learn & Share

    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 may not have a known cause. For more information, visit CCF's website.
  • September 10 Take Action
    Take Action

    Raise awareness of pediatric cardiomyopathy and show your support by wearing a CCF cureband. Get your family and friends to join you in your awareness initiative. To order CCF curebands, click here.
  • September 11 Show & Tell
    Show & Tell

    It's Follow Friday! Tweet a #FF of someone you follow who is making a difference for kids with cardiomyopathy and tag CCF @CCFheartkids.
  • September 12 Learn
    Learn & Share

    Share this fact: #KnowYourHeart Symptoms can vary widely with different types of cardiomyopathy. Common symptoms include difficulty breathing, fatigue, exercise intolerance, fainting, dizziness or light-headedness, chest pain, heart palpitations, and swelling in the ankles, feet, legs, abdomen and neck veins. For more information, visit CCF's website.
Week 3: September 13-19
  • September 13 Take Action
    Take Action

    Distribute CCF’s educational materials to physician offices, hospitals, community centers, churches and libraries and get them involved in educating others on cardiomyopathy. To order CCF materials, click here.
  • September 14 Show & Tell
    Show & Tell

    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 cardiomyopathy child there is a chronic and potentially life-threatening heart disease.
  • September 15 Learn
    Learn & Share

    Share this fact: #KnowYourHeart Cardiomyopathy remains the leading cause of heart transplants in children over one year of age. Join Dr. Joseph Rossano, Medical Director of Heart Failure and Transplantation, at The Children’s Hospital of Philadelphia for a webinar at 6pm EST on preparing for transplant. To register, click here.
  • September 16 Take Action
    Take Action

    Join Team CCF for our first annual Walk For A Cure. Come walk with us in New Jersey, plan a walk in your hometown or support as a sponsor or virtual walker. Invite your friends, family members and colleagues to support your efforts. To register or donate, click here.
  • September 17 Show & Tell
    Show & Tell

    It’s Thank You Thursday! Send a #thankyouthursday to someone who has helped raised awareness of pediatric cardiomyopathy. This could be a legislator who supports life-saving legislation, a nurse who comforted a cardiomyopathy child or an organization that supports cardiomyopathy research.
  • September 18 Learn
    Learn & Share

    Share this myth buster: #KnowYourHeart Surgery can cure cardiomyopathy. Fact: While there are surgical and medical treatments that may improve quality of life, there is no cure to repair the damaged heart or stop the progression of the disease. For more information, visit CCF’s website.
  • September 19 Take Action
    Take Action

    Invite a local Girl Scouts or Boy Scouts troop to help raise awareness. Have them draw hearts on the sidewalk with chalk, paint some heart posters or set up an information table with CCF educational materials in the community. Contact Gina Peattie at CCF for activities that compliment the Girl Scout Journey Program.
Week 4: September 20- 26
  • September 20 Learn
    Learn & Share

    Share this fact: #KnowYourHeart A cardiomyopathy diagnosis usually results in frequent doctor visits, daily medication, and possibly surgical interventions and activity restrictions. Many children are restricted from competitive sports and some require school accommodations. For more information, visit CCF's website.
  • September 21 Take Action
    Take Action

    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 social media outlets such as Facebook, Instagram and Twitter @ccfheartkids. To participate in CCF’s AED scavenger hunt, click here.
  • September 22 Show & Tell
    Show & Tell

    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 cardiomyopathy child there is a chronic and potentially life-threatening heart disease.
  • September 23 Learn
    Learn & Share

    Share this fact: #KnowYourHeart Cardiomyopathy is the leading cause of sudden cardiac arrest (SCA) in the young. An estimated 2,000 people younger than 25 will die of SCA every year in the U.S., and SCA is the top cause for death on school property. To learn about legislation that protect at-risk children in school, click here.
  • September 24 Take Action
    Take Action

    Make your voice heard and urge your elected senators and representative to cosponsor the SAFE PLAY Act, which includes provisions for protecting student athletes from sudden cardiac death. With more supporting members of Congress, the bill will have a greater chance of being passed into law. To send a personalized letter to your legislators, click here.
  • September 25 Show & Tell
    Show & Tell

    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.
  • September 26 Learn
    Learn & Share

    Share this fact: #KnowYourHeart Knowing your family cardiac history is critical to preventing premature death. Although there is no diagnostic test that can detect all forms of cardiomyopathy, a discussion of your family’s heart health with your family doctor or pediatrician can help assess those at risk for cardiomyopathy. To learn more about recording your family’s heart history, visit the Centers for Disease Control and Prevention site.
Week 5: September 27-30
  • September 27 Take Action
    Take Action

    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.
  • September 28 Learn
    Learn & Share

    Share this myth buster: #KnowYourHeart: Pediatric cardiomyopathy is a congenital heart defect. Fact: Congenital heart defects (CHD) and pediatric cardiomyopathy (PCM) both affect the heart, but CHDs affect the heart’s structure and/or vessels, while PCM affects the heart’s muscle. For more information, download CCF’s FAQ Sheet.
  • September 29 Show & Tell
    Show & Tell

    Plan a Big Heart bake sale at school, at work or in the community. Your ongoing fundraising support helps us to accelerate the search for cures. Contact Jennifer Hivry for assistance and to get your fundraising guide and starter kit.
  • September 30 Learn
    Learn & Share

    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.

Follow us on Facebookand Twitter for daily activities and get your community involved with fundraisers and awareness events. For more information and ideas contact Sheila Gibbons.

The Children's Cardiomyopathy Foundation is pleased to partner with the following organizations on this month-long awareness initiative. View press release.

The Children's Cardiomyopathy Foundation is pleased to partner with the following organizations on this month-long awareness initiative.

American Academy of Pediatrics

American College of Cardiology

American Heart Association

Centers for Disease Control and Prevention

National Association of School Nurses

National Athletic Trainers' Association

National Organization for Rare Disorders

Parent Heart Watch

Sarcomeric Human Cardiomyopathy Registry (ShaRe)

School-Based Health Alliance

The Society of Thoracic Surgeons

Sudden Cardiac Arrest Foundation