CHD Awareness Week 2011

January 30, 2011
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CHD Awareness Week 2011

  Sponsored by TCHIN , CHD Awareness Week is  February 7th-14th.  During that time national and local organizations, congenital cardiology centers and individuals work together through this annual effort to raise CHD awareness.  Mended Little Hearts groups across the country are participating by obtaining proclamations, celebrating our CHD community and various other awareness activities. Check back often for updates on all of the good work we are doing!

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Action Alert – Do Your Part and Vote!

October 29, 2010
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A democracy only works if we take part.  The greatest work of advocacy is in electing your officials! Midterm elections are upon us.  Many of us have the ability to help elect or re-elect members to represent us in Washington and in our home state.  Share your passion with your vote. *Note: As a non-profit organization,  Mended Little Hearts cannot endorse a candidate or party.  We encourage you to take part in the following activities as a concerned individual. As an advocate, you can make the most of the election process by following the Big 3: 1) Educate yourself and learn about the candidates: * Who are they? * What do they stand for? * How do they feel about issues that are important to you? 2) Encourage others: * Talk to your friends and family about going to vote. * Mobilize your network and remove barriers and excuses (offer rides or childcare). 3) Vote!!! * Register to vote in advance. * Avoid lines at the polling site. “People often say that, in a democracy, decisions are made by a majority of the people. Of course, that is not true. Decisions are made by a majority of those who make […]

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Federal Recommendation Regarding CHD Screening of Newborns

September 20, 2010
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We wanted to update you on some newborn screening information that was just released.  Mended Little Hearts will continue to work with other CHD organizations, health care professionals and government agencies on this important issue. In a ground-breaking recommendation, The Secretary’s Advisory Committee on Heritable Disorders in Newborns and Children (SACHDNC), a government agency reporting to Health and Human Services Secretary Sebelius, clearly stated that there is a need to screen newborns for the most severe and life-threatening type of congenital heart defects-critical congenital cyanotic heart disease.  The committee recommended that screening for severe CHD be added to the traditional newborn screening panel, however, noted that additional work needs to be done in a timely manner. These acknowledged efforts involve The National Institutes of Health (NIH) to conduct research to look at the entire screening process; The Centers for Disease Control and Prevention (CDC) to complete surveillance to look at outcomes; and, The Health Resources and Services Administration (HRSA) to begin looking at standards.  There is also a recommendation for collaboration between public health and health care professional organizations and families to develop appropriate education and training materials.  For complete text of the recommendations as presented by HRSA, please see below. As […]

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Taking it to the TODAY Show

August 4, 2010
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Taking it to the TODAY Show

Watch the TODAY Show on Thursday, August 5, 2010 to see Angee and Riley! This past January, Angee Brock, a member and coordinator for Mended Little Hearts of Mississippi, discovered the TODAY Show’s “Everyone Has A Story” contest while looking for ways to spread CHD awareness.  Immediately, Angee knew this was the perfect opportunity to share her daughter’s story of her fight with CHD.  She wrote an essay and sent photos to paint the picture of their struggle to keep Riley alive, her treatments and surgery over the past two years, the ways she has found to help her cope and what she hopes and expects the future to hold for Riley. Two year old Riley is a CHD warrior, an adorable little girl with blond hair and blue eyes, an infectious smile and a stubbornness that helps her hold her own with three older siblings.  She has been through so much to survive her journey with CHD.  Angee is an amazing single mother who works hard to raise her four children and keep her youngest alive and healthy.  She is also very passionate about spreading awareness of CHD and helping other families who are traveling the same journey as her […]

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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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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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