Do More

There are more than 40 different types of congenital heart defects. Little is known about the cause of most of them. There is no known prevention or cure for any of them. More than 50% of all children born with a congenital heart defect will require at least one invasive surgery in their lifetime.

In the United States, twice as many children die from congenital heart defects each year than from all forms of childhood cancer combined, yet funding for pediatric cancer research is five times higher than funding for CHD.

Think about this: One percent of all babies born will have a heart defect of some sort.  That is four times the number of children diagnosed with a childhood cancer.  And four times as many will die from their heart disease.  Funding for pediatric research is painfully inadequate, even disproportionate, to the child population.

It’s hard to figure out what we can do.  Especially when there is simply so much to be done.  1in100 is about helping connect advocates to the people, places and organizations where they can have the greatest impact.  We’re still learning as it happens.  And recommendations are welcome at every turn.

For now, we’ll be sharing best practices and tools that can help with all varieties of advocacy – state and federal government, non-profits, awareness, hospitals & health centers, research institutions and direct patient/family outreach.   Now is the to know more.   And do more.  #1in00.

Only one penny of every dollar donated to the American Heart Association goes towards congenital heart defect research.  Right now, of every dollar the government spends on medical/research funding only a fraction of a penny is directed toward CHD research.

16 Responses to “Do More”

  1. I think people would be able to raise a lot more money for the cause if there was one good place to donate to. Like you said, the AHA uses only a penny of each dollar!? So where should the funds go!? Why doesn’t CHD have an organization like St Jude’s who I am sure raise amazing funds. We need one big collect to go to research. Can someone get that going?

  2. Jeni

    We’re definitely working on it!!! :)

  3. Rosanita Ratcliff 23. Jan, 2010 at 4:45 pm

    There is already an organization in the USA whose sole purpose is to raise funds on behalf of people with CHD. I found them online last year.

  4. Rosanita, could you share the name of the organization you are referring to? It’s always good to have those resources available for those who can give! Thanks!

  5. The Childrens Heart Foundation takes donations to support awareness and research just for CHD!

    http://www.childrensheartfoundation.org/

  6. Great organization! I share them with many people!

  7. Rosanita Ratcliff 24. Feb, 2010 at 1:40 pm

    That may have been the one that I was talking about. Sorry.

  8. On another note, I couldn’t find anywhere to send this message privately, so I’m posting it here. If it’s the wrong spot, feel free to remove it and you have my utmost apologies. I’m an adult with CHD and am beginning to feel as though those of us with birth defects are getting lost in the political crossfire of health reform. I began a campaign on Facebook called the Access Campaign and would like your help getting the word out about the Health Reform portion. I seriously think that it’s time for our communities to band together and speak up. The note from the page follows:

    People with birth defects are getting caught in the political crossfire. They didn’t ask to have the defects and many lead healthy lifestyles. However, they can’t get insured or have to pay exhorbant prices. Many fall in between the cracks: they are able and willing to work, so they make too much money for medicaid and yet are not old enough for medi-care. Nor can they afford the price of individual insurance. They should be allowed to pay into medicare advantage plans. Those plans would give them access to physicians who can provide services, would help fund medicare, and would give us access to healthy lifestyles information and gym memberships offered by some plans, therefore helping to keep them healthier and less of a burden to the system.

    Currently, the fight for insurance for all is too broad and causes dissent between political parties, thus failing those with disabilities. Many hope that the trickle down effect will help people with disabilities. This is not true. Our campaign asks that politicians look beyond insuring all Americans and focus on those who need it the most. While we are quite aware that many Americans are not insured, people with disabilities are often forgotten or caught in political crossfire of groups who wish for broad changes that are not concrete. Insuring those with birth defects, while attaching the accountability of payment for services based on income is an option that makes sense. This keeps those with birth defects out of the general pool, thus no longer leaving them as part of the reason for higher premiums.

    We are not requesting that the fight for health care for all be abandoned. We are asking for the American people to put those with birth defects first, to pause the debate and give them the coverage they need.

    If you believe as we do, please contact us so that your members may write their representative today and ask them to support a single bill whose sole purpose, without earmarks, allows people with birth defects to pay into Medicare Advantage plans, with premiums based only on income level (not including savings and other non-liquid assets) of parents, guardians and the individuals of age.

    Thank you,
    Rosanita Ratcliff

  9. Dear 1 in 100:

    I came across your site online. I have a 2 year old daughter, Cassidy, with Tetralogy of Fallot. I think what your organization is doing to raise awareness for CHD’s is wonderful.
    My wife and I own a jewelry company and we make pendants and pins that pertain to Congenital Heart Defects.
    We can personalize any of our items with your organizations logo and/or slogan or event information. Custom items are our specialty. We also do individual pendants for CHD kids, parents & friends as well as memorial pendants.
    Please take a look at our site when you get a moment: http://www.lucky10.etsy.com
    We would love to work with an organization such as yours to help spread the word about CHD’s. Please contact us if we can be of any further assistance.

    Thank you,

    Vito Lisa
    Lucky 10 Awareness Pendants
    http://www.lucky10.etsy.com

    P.S. If you want to keep up with Cassidy’s journey here is her Carepage info:
    http://www.carepages.com , Page name: cassidylisa

  10. Thanks for the note! So glad to hear your daughter is doing so well. We are veterans of Children’s Boston too. We love that place. Saved our baby…I can pass along the info for your etsy shop. I assume a portion of proceeds go to CHD research or support orgs? I just couldn’t see it right off when I looked. 1in100 doesn’t fundraise at the moment – we are just a place for those touched by CHD to get info and advocate. But I could certainly partner in promoting these and directing any proceeds to Children’s Heart Foundation or another entity. They are beautiful pieces! Will have to order! Hope to be in touch…Annamarie

  11. Rosanita, You aren’t going to believe – but I was just in Washington DC this week…working on a number of health care issues, but one of our current ventures (through my “real” job) is a Medicare Advantage advocacy campaign. How amazing that you bring this up and have clearly put time and energy into this. I have a conference call on this Monday. Would you be available to chat by phone sometime early this week? My numbers at: 612.465.8388 or 612.964.6728. Looking forward to sharing information and seeing where this can go. Annamarie

  12. Thank you for putting together this site…You have done a wonderful job! I see that someone asked about research and I wanted to let you know that our organization focuses on CHD Research. Research is our hot button as this is what will save lives…We lost our daughter to a CHD and have since dedicated ourselves to funding research in hopes that more children will survive these defects. For more information, you are welcome to check out http://www.hope4tinyhearts.com.

    We have a great deal of hope for the future of heart children and their families!
    -Michelle

  13. Michelle Leigh Padilla 17. Sep, 2010 at 2:11 pm

    I am 34 years old. I just recently found out that I have a syndrome called VCFS aka Di George Syndrome. I am having problems with my local government other wise know as Social Security. I am fighting to keep my benefits. The Social Security office keeps turning me down. I have had three open heart surgeries, ear surgery, mouth surgery, and most recently sinus surgery. I have several learning disabilities as well. I had a seizure when I was 18. I have a hard time keeping my job because I can not pass a simple math or reading test. Can you please help me
    thank so much
    Michelle Leigh Padilla

  14. Do more? Yes, this is great! In comment to where to help raise funds for research – the Children’s Heart Foundation and the Adult Congenital Heart Association’s CONGENITAL HEART WALKS in all regions of the country — go to http://www.congenitalheartwalk.org

  15. James Mosteller 22. Jul, 2012 at 8:52 am

    Pulse Ox Testing in Florida for ALL Newborns

    I am the Government Relations Director in Florida for the American Heart Association and we are working to require Pulse Ox screening as part of Florida’s newborn screening panels.

    Who would be a good contact at 1 in 100 and who in other Florida organizations can I contact to build grassroots support for this new law.

    thanks,
    James.

  16. James Mosteller 22. Jul, 2012 at 8:55 am

    If anyone reading the above message is in Florida and interested in helping, I can be reached at: james.mosteller@heart.org.

    thanks,
    James.