Posts Tagged ‘ Research ’

The CHF and Build A Bear Workshop National Partnership

February 15, 2013
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The Children's Heart Foundation Build a Bear

The Children’s Heart Foundation is a fabulous organization aimed at bringing “health, hope, and happiness to children impacted by Congenital Heart Defects.”  Their goal is to make this happen by funding research for diagnosis, treatment, and prevention of CHD. We love The CHF, and everything they do to help our children survive. The Children’s Heart Foundation and Build A Bear Workshop National Partnership is in its fourth consecutive year.  Build A Bear has created an opportunity for all of their guests to make a contribution to CHF when they complete their purchase during the month of February. This is a great CHD Awareness activity for all families impacted by CHD. Here is how it works: Visit any one of Build A Bear Workshop’s over 300 stores throughout the United States. ( www.buildabear.com/locations ) Select a lovable & cuddly item. Stuff the item, make a wish & place the heart inside. Select clothing or any other accessory Create a “birth certificate”. Proceed to checkout. While at checkout, you will be asked if you wish to make a $1 contribution to CHF, thereby helping fund the most promising congenital heart defect research, “Saving Children’s Lives – One Heart at a Time”. Thanks […]

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MLH Funds CHD Research for Heart Month

February 1, 2013
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As you may know, February is Heart Month and February 7-14 is Congenital Heart Defect (CHD) Awareness Week (officially recognized in many cities, counties and states).  We at Mended Little Hearts were thinking, “How can we make a bigger difference for children with CHD and their families this Heart Month?”  We thought a lot about what we were working so hard to create awareness for and why. One of the main things we create awareness for is CHD research funding, right?  We all know it is underfunded and therefore too many of our kids are having problems and some are becoming angels way too soon.  So, we decided to do something about it and fund research this year. We then decided that we didn’t just want to fund research in general, but we would pick a specific project–one that we felt was making a big impact.  We picked the Joint Council on Congenital Heart Defects’ Quality Improvement Collaborative as our project (https://jcchdqi.org/). You may ask, “Why did you choose that project over others?’  Good question.  Here’s why: It involves multiple sites (46 different hospitals participate–woohoo!) The JCCHD involves several great CHD organizations It has a direct impact on babies’ lives. Data is being […]

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Surviving CHD

July 21, 2012
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Did you know that some of our Coordinators and Members are Adults Surviving CHD? We have been introducing you to Coordinators from across the country, we now have close to 70 groups! Soon we will be introducing Adults Surviving CHD in a new blog series. They will be sharing life experiences, what it was like to grow up with a Congenital Heart Defect in times when Awareness was not important, what it was like to transition into adulthood, and how their Congenital Heart Defect has shaped them. Some of them are parents, and some of them will never have children. All of them are Surviving CHD. As adults Surviving CHD they play an important role in helping new CHD parents understand the future of our children. Many times we enter the world of CHD blindsided, without any real understanding of what our future will hold, without any real understanding of what the future has in store for our child. While every pregnancy, birth experience, childhood, Congenital Heart Defect and Adult Surviving CHD is different, it is important to understand that in most cases CHD is not a death sentence. Join us as we get to know the Adults Surviving CHD, […]

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Congenital Heart Futures Act – Take Action Today!

July 15, 2010
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Congenital Heart Futures Act – Take Action Today!

The Mended Little Hearts, in partnering with other CHD organizations, has achieved great success in Federal legislation with the passage of the Congenital Heart Futures Act. Now, the lawmakers must put money behind what they agreed to in this law. For more information about the Congenital Heart Futures Act, please visit our advocacy page. TAKE ACTION RIGHT NOW: The budget process is moving along. The people who assign the money (appropriations) are going to be making their lists of what to include in the budget: The House Appropriations Committee’s Labor, Health and Human Services (HHS) and Education Subcommittee is scheduled to mark-up the FY-2011 Bill this afternoon! The Senate Subcommittee will follow shortly. Urge your Senators and Representatives to contact the Chairpersons of the Health and Human Services Appropriations Subcommittees to ensure they include money in the Fiscal Year 2011 Labor, Health and Human Services Appropriations bill to fund the congenital heart disease surveillance system at the Centers for Disease Control and Prevention. You can do this in two easy ways: Call their office today. Write your legislators Call their office today. CALL YOUR LEGISLATOR: Find the contact information for your legislator at www.senate.gov or www.house.gov Call the number listed […]

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