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

30 Days, 30 Ways to Celebrate
Children's Cardiomyopathy Awareness Month
in September

Join the Children's Cardiomyopathy Foundation (CCF) this September to raise 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 raise awareness throughout the month of September. There are 30 days of fun and informative activities to highlight pediatric cardiomyopathy! You can view each week's activities by clicking on the links below. To view the complete awareness activity calendar, click here.
 

Take Action

Take Action

•  Write your Congressmen to ask for their support of life-saving
    legislation to protect heart kids.
•  Host a fundraiser for CCF to help fund more research to find
    cures.
•  Take a photo of an automatic external defibrillator (AED) and
    share its location on social media to prevent another sudden
    cardiac death.

Learn

Learn

•  Know the signs and symptoms of cardiomyopathy.
•  Share facts about the disease on social media to help identify
    more undiagnosed kids who may be at risk for sudden cardiac
    arrest.
•  Give CCF materials to physician offices, hospitals, community
    centers, churches or libraries.

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 a heart event in town.
•  Tweet a #FF (Follow Friday) of someone you follow who is
    making a difference for kids with cardiomyopathy.
•  Post a #thankyouthursday (Thank You Thursday) about a
    Congressman who is working to keep cardiomyopathy
    heart kids safe.

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

Week 1: September 1-6
  • September 1
    Learn Learn
    Tell everyone you know that September is about kids 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 this heart 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
    Make your voice heard and urge your elected Senators and Congressmen to cosponsor the Cardiomyopathy HEARTS Act. The more members of Congress who support the bill, the greater chance the bill will be passed into law. To send a personalized letter to your legislators, click here.
  • September 4
    Learn
    Learn
    Share this heart 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.
  • September 5
    Show & Tell
    Show & Tell
    Tell friends about a cardiomyopathy 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 devastating heart disease. To read about the featured heart kid, visit CCF's Facebook page.
  • September 6
    Take Action
    Take Action
    Raise awareness of CCF and show your support for heart kids by wearing a CCF cureband. Get your family and friends to join you in support. To order CCF curebands, click here.
Week 2: September 7-13
  • September 7
    Learn
    Learn
    Share this heart fact: #KnowYourHeart Cardiomyopathy can occur in any child regardless of age, race, gender or socioeconomic background. For more information, visit CCF's website.
  • September 8
    Take Action
    Take Action
    Host a Big Heart bake sale at school, a sporting or social event, work, or a community center. Your fundraising support helps CCF in the fight against pediatric cardiomyopathy. We are here to help with a fundraising starter kit, which includes a poster, brochures, stickers and balloons to make your event a success. Contact Jennifer Hivry at CCF for assistance.
  • September 9
    Learn
    Learn
    Join Dr. John Lynn Jefferies, Director of Advanced Heart Failure and Cardiomyopathy Services at Cincinnati Children's Hospital Medical Center, for a webinar on cardiomyopathy in children. The presentation is ideal for anyone interested in learning more about cardiomyopathy. To register, click here.
  • September 10
    Learn
    Learn
    Share this heart fact: #KnowYourHeart Cardiomyopathy in children can either be acquired through a viral infection or cancer chemotherapy, or inherited genetically through one or both parents. Not all is understood about the disease in children, and 75% of those diagnosed do not have a known disease cause. For more information, visit CCF's website.
  • September 11
    Show & Tell
    Show & Tell
    It's Thank You Thursday! Send a #thankyouthursday to someone who has helped raise awareness of pediatric cardiomyopathy. This could be your state representative for supporting life-saving legislation, a nurse who comforted a heart kid in the hospital or an organization supporting cardiomyopathy research.
  • September 12
    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 13
    Learn
    Learn
    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.
Week 3: September 14-20
  • September 14
    Take Action
    Take Action
    Invite a local Girl Scouts or Boy Scouts troop to help raise awareness. Provide red chalk and have them draw hearts on sidewalks, paint some heart posters and set up an information table with CCF educational materials. Contact Gina Peattie at CCF for activities that compliment the Girl Scout Journey Program.
  • September 15
    Learn
    Learn
    Share this heart fact: #KnowYourHeart There is tremendous variation in symptoms among the 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 veins in the neck. For more information, visit CCF's website.
  • September 16
    Show & Tell
    Show & Tell
    Tell friends about a cardiomyopathy 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 devastating heart disease. To read about the featured heart kid, visit CCF's Facebook page.
  • September 17
    Take Action
    Take Action
    Bring CCF pamphlets to physician offices, hospitals, community centers, churches or libraries and get them involved in educating others on the disease. To order CCF materials, click here.
  • September 18
    Learn
    Learn
    Share this heart fact: #KnowYourHeart Cardiomyopathy remains the leading cause of heart transplants in children over one year of age. Cardiomyopathies result in some of the worst pediatric cardiac outcomes, with nearly 40% of children with symptoms receiving a heart transplant or dying. For more information, visit CCF's website.
  • September 19
    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 20
    Learn
    Learn
    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.
Week 4: September 21- 27
  • September 21
    Learn
    Learn
    Share this heart 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 can protect at-risk children in school, click here.
  • September 22
    Take Action
    Take Action
    Host a CCF Cardiomyopathy Heart Walk in your community. Taking action means taking a stand against kids' heart disease. We are here to help with a fundraising starter kit, which includes a poster, brochures, stickers and balloons to make your event a success. Contact Jennifer Hivry at CCF for assistance.
  • September 23
    Show & Tell
    Show & Tell
    Tell friends about a cardiomyopathy 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 devastating heart disease. To read about the featured heart kid, visit CCF's Facebook page.
  • September 24
    Learn
    Learn
    Share this heart fact: #KnowYourHeart Many children with cardiomyopathy have activity restrictions and psychosocial issues related to living with a chronic illness. A diagnosis usually results in frequent doctor visits, daily cardiac medication and possibly surgical interventions. Other modifications include dietary adjustments, restriction from competitive sports and school accommodations. For more information, visit CCF's website.
  • September 25
    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 your state representative for supporting life-saving legislation, a nurse who comforted a heart kid in the hospital or an organization supporting cardiomyopathy research.
  • September 26
    Show & Tell
    Show & Tell
    Talk to your family physician or child's pediatrician about cardiomyopathy and show this risk factor evaluation form to them. Recognizing the risk factors associated with cardiomyopathy can help prevent many sudden cardiac deaths. To download the risk factor sheet, click here
  • September 27
    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.
Week 5: September 28-30
  • September 28
    Take Action
    Take Action
    Educate your child's school staff, school nurse and fellow parents by giving a school presentation on pediatric cardiomyopathy and distributing CCF's educational materials. To download CCF's school presentation guidelines and outline, click here.
  • September 29
    Learn
    Learn
    Share this heart fact: #KnowYourHeart Knowing your family cardiac history is essential to preventing premature cardiomyopathy deaths. There is no low-cost diagnostic test that can detect all forms of cardiomyopathy, but a discussion of your family's heart health with your family doctor or pediatrician can help assess your child's risk for cardiomyopathy. To learn more about recording your family's cardiac history, visit the Centers for Disease Control and Prevention site.
  • September 30
    Learn
    Learn
    Congratulations - you are now a Cardiomyopathy Awareness Ambassador! The good news is you don't have to stop at the end of September; there are 365 days a year to continue spreading the word about pediatric cardiomyopathy.

Follow us on Facebook and Twitter for daily activities and get your community involved through fundraisers and awareness events. For more information, contact Sheila Gibbons via email or at 866.808.2873 ext. 902.

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 American Public Health Association
The CHAD Foundation Save A Life Foundation
National Association of School Nurses National Athletic Trainers Association
National Organization for Rare Disorders Parent Heart Watch
SHaRe School-Based Health Alliance
The Society of Thoracic Surgeons