Blog Archives

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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4th Annual CHD Symposium

June 25, 2010
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4th Annual CHD Symposium

July 16 & 17, 2010, Madison, WI Parents and Caregivers, come learn and network with other families of children with Congenital Heart Defects. Learn the latest in medical advances, how to navigate the insurance maze, growing-up with CHD and much more… Friday, July 16, 6:30 p.m. – 8:30 p.m., Ice Cream Social, American Family Children’s Hospital Saturday, July 17, 2010, 8 a.m. – 4:30 p.m., Conference, Monona Terrace and Convention Center Presented by: Mended Little Hearts and Saving Little Hearts American Family Children’s Hospital and the UW Department of Pediatrics With Additional Sponsorship from: Kohl’s, St. Jude Medical and the American Heart Association Cost: Because of the generosity of our sponsors, there is no cost to attend this conference. Meals: Some light snacks will be offered at the conference, however meals will be on your own. You are welcome to purchase a boxed lunch on site at the conference or go out for lunch at one of the many restaurants that are within walking distance of Monona Terrace. We apologize, but no outside food is allowed at the Monona Terrace Convention Center. Childcare: Complimentary childcare will be provided on site. Please be sure to let us know in advance if […]

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CHD Lobby Day is fast approaching

March 26, 2010
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National Congenital Heart Lobby Day and ACHA’s Vision 2020 are just a few weeks away!  April 22nd will be here before you know it. The deadline for hotel reservations at the Phoenix Park Hotel is rapidly approaching, and there is some concern that the rooms for Wednesday night will sell out, while we have plenty of rooms if you are staying for Thursday and Friday.  In order to help plan your trip to Washington, DC we are supplying a list of additional local hotels (below) for your consideration when you are booking your accommodations. All of the hotels listed are close to the Phoenix Park Hotel, or a Metro ride (Red Line) away from Union Station, which is across the street from the Phoenix Park. The events of Lobby Day and Vision 2020 will still take place in the conference rooms at the Phoenix Park Hotel.  Once you arrive for the day, there will be no need for additional traveling, with the exception of our legislative visits – I do want to remind you that there will be a fair amount of walking for these visits so wear comfortable shoes. Feel free to email me at advocacy@mendedlittlehearts.org or call me […]

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Congenital Heart Defect Awareness Week

February 7, 2010
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CHD Awareness week is here.  Mended Little Hearts is working on a nationwide effort to bring awareness to the most common birth defect.  From a great presence in the media to sharing in our schools, MLH members are educating the public about congenital heart defects.  Many local groups are holding events and activities this week to promote awareness in their communities.  With nearly 50 groups, representing over 2000 families, Mended Little Hearts is helping to improve quality of life and win the fight against CHD.

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Little Hearts Hold Big Price Tags-

January 19, 2010
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Little Hearts Hold Big Price Tags-

Congenital Heart Defects are among the most costly diagnosis for children. The highest average hospital charges accrued for infants were those with hypoplastic left heart and common truncus arteriosus, followed by coarctation of the aorta and transposition of the great arteries, according to a CDC study published in the January 19, 1997 issue of the Morbidity and Mortality Weekly Report. (http://www.medscape.com/viewarticle/551060) In the first 7 days of his life, my son, Nicholas, experienced 3 different hospitals, his first helicopter ride and open heart surgery, all to a tune of nearly $100,000. It only took nine months of discussions with the insurance company to get them to cover the majority of our expenses. Jodi Lemacks, President of Mended Little Hearts, was not so lucky. Her experience is representative of many families dealing with the financial devastation resulting from treatment of congenital heart defects. Jodi’s incredible journey has been documented by The Washington Post, in conjunction with the Kaiser Foundation, found here: http://tiny.cc/NTPFM Mended Little Hearts advocates for accessible, affordable, and adequate health care, providing the voice for the littlest heart patients of all. We partner with other organizations to address the need for insurance reform including elimination of lifetime caps, elimination of […]

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CHD Awareness Week

January 12, 2010
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CHD Awareness Week, February 7-14, sponsored by The Congenital Heart Information Network (www.tchin.org) and supported by Mended Little Hearts, is fastly approaching.  Let us know what you are doing to help create awareness around the nation.  Most people don’t know that congenital heart defects are the most common defects in the United States.  Let’s help spread that awareness.

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Hope for the Holidays

December 10, 2009
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Hope for the Holidays

Give the gift of Hope! Donate Today.

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