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

Celebrate Children's Cardiomyopathy Awareness
Month in September

30 Days, 30 Ways

Join us 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! To view the complete awareness activity calendar, click here.

Take Action Take Action

• Write your representatives to ask for their support of live 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 defibrilator (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 representative 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 Pediatric Cardiomyopathy Awareness logo. To download logo, click here.
  • September 2 Learn
    Learn
    Share this heart fact: #pcmheartfact 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 representatives 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: #pcmheartfact 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
    It's Follow Friday! Tweet a #FF of someone you follow who is making a difference for cardiomyopathy heart kids and tag CCF @CCFheartkids.
  • 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: #pcmheartfact 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, sporting or social event, work, or community center. Your fundraising support helps CCF in the fight against pediatric cardiomyopathy. We are here to help with a fundraising starter kit including poster, brochures, stickers and balloons to make your event a success. Contact Jennifer Hivry at CCF for assistance.
  • September 9 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 all these profiles, visit CCF's Facebook page.
  • September 10 Learn
    Learn
    Share this heart fact: #pcmheartfact 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 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 12 Show & Tell
    Show & Tell
    It's Follow Friday! Tweet a #FF of someone you follow who is making a difference for cardiomyopathy heart kids and tag CCF @CCFheartkids.
  • September 13 Learn
    Learn
    Share this myth buster: #mythbuster Surgery can repair the heart in cardiomyopathy. Fact: Unlike other heart conditions, there is no treatment or cure that can repair the damaged heart or stop the progression of the disease. Instead, mediations, implantable devices and surgery are prescribed to relieve symptoms associated with cardiomyopathy. For more information, visit CCF's website.
Week 3: September 14-20
  • September 14 Take Action
    Take Action
    Invite the 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 Jennifer Hivry at CCF for more ideas.
  • September 15 Learn
    Learn
    Share this heart fact: #pcmheartfact 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 their profile, visit CCF's Facebook page.
  • September 17 Take Action
    Take Action
    Bring CCF pamphlets to physician offices, hospitals, community centers, churches or library and get them involved in educating others on the disease. To order CCF materials, click here.
  • September 18 Learn
    Learn
    Share this heart fact: #pcmheartfact Cardiomyopathy remains the leading cause of heart transplants in children over one year of age. Cardiomyopathies results in some of the worst pediatric cardiac outcomes with nearly 40% of children with symptoms receive 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 cardiomyopathy heart kids and tag CCF @CCFheartkids.
  • September 20 Learn
    Share and Learn
    Share this myth buster: #mythbuster: 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: #pcmheartfact 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 including 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 their profile, visit CCF's Facebook page.
  • September 24 Learn
    Share and Learn
    Share this heart fact: #pcmheartfact 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 Tell
    It's Follow Friday! Tweet a #FF of someone you follow who is making a difference for cardiomyopathy heart kids and tag CCF @CCFheartkids.
  • 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 with a presentation on cardiomyopathy or by distributing CCF's educational materials, including CCF's Cardiomyopathy School Resource Kit. To order CCF materials, click here.
  • September 29 Learn
    Learn
    Share this heart fact: #pcmheartfact Knowing your family cardiac history is essential to preventing pre-mature 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 heart 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 we don't have to stop at the end of September; we have 365 days a year to spread 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.