Posts Tagged ‘ MLH ’

Neurodevelopmental Issues and CHD – Webinar

November 2, 2012
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This webinar on Neurodevelopmental Issues and CHD is hosted by Mended Little Hearts and presented by Dr. Brad Marino of Cincinnati Children’s Hospital. It took place live online on September 7, 2012.


Neurodevelopmental Issues and CHD from Jodi Lemacks on Vimeo.

 

 

Meet Pam Camit, Co-Coordinator for MLH of Greater Portland

June 27, 2012
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My name is Pam Camit and I am the Group Co-Coordinator for Mended Little Hearts of Greater Portland in Oregon. Our group was chartered in March of 2012 and we have already built some fantastic relationships with other local heart families. We have volunteered at both Ronald McDonald houses in our area, walked in the Jr. Rose Festival Parade and we are gearing up for our first family picnic. I have four kids, two are grown and out of the house and two young boys. My youngest, Ben, was born with Atrioventricular Septal Defect and Patent Ductus Arteriosus in 2008. He had his Open Heart Surgery at three months of age and due to that procedure he has acquired Mitral Valve Regurgitation. He currently takes Lisinopril daily to hopefully prolong the next surgery he will inevitably need. It was a shock for my husband and I to find out that Ben was born with Congenital Heart Defect. Not unlike many parents, we had no idea what CHD was or meant for our child. He was diagnosed on his second day of life. I remember pouring myself into the internet for answers. Why? How? What did I do wrong? Eventually I […]

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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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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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