Posts Tagged ‘ Mended Little Hearts ’

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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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.

 

 

Say Thank You to Your CHD Child’s Cardiology Team, FREE Printable!

October 25, 2012
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The next time you head off to see your CHD Child’s Cardiologist, pediatrician, or pack for surgery, print off some of these sweet Thank You slips.

Print them off on card stock, cut the page into quarters and have your child sign, or color on the back of it. Tape a Hershey’s Kiss to each card and pass one to the nurse taking care of your child. My experience says that everyone loves chocolate! Don’t forget to pass one to the X-ray, Echo, or Packemaker tech!  After surgery, when you are seeing the same housekeeping and cafeteria staff in your child’s room, pass one to them too. Everyone who takes care of your child during visits or hospital stays can get a sweet Thank You from your family! Read more »

Nicole Sanchez is Surviving CHD

August 25, 2012
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My name is Nicole Sanchez and I was born on January 4th, 1983 with tricuspid atresia. With TA also comes normally related great arteries with a small ventricular septal defect and rudimentary right ventricle. Basically this means that I was born without a tricuspid valve, and because the valve did not form, neither did my right ventricle. I had two closed-heart surgeries as a baby including a BT shunt placement. In November of 1988, I had open-heart surgery, a Fontan procedure. Since my Fontan, I have been fortunate enough to not need any more surgeries. I do see a cardiologist every year for an EKG and Echo, and there’s the occasional heart monitor or stress test, but so far, so good…Not to say there haven’t been a couple of tiny bumps in the road, but at the end of the day I have led a relatively normal life. I grew up with two brothers (one older, one younger- both heart healthy), went to public school, had a job since I was 14, traveled with friends and studied abroad during college, and have even walked in a half marathon through the streets of San Francisco.  My mother once told me that […]

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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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Meet Shannan Wierzbicki: Coordinator for Mended Little Hearts of Volusia County

July 12, 2012
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My name is Shannan Wierzbicki, I am the Coordinator for Mended Little Hearts of Volusia County. I started our group in July 2011 and support families in Volusia County, FL. We meet the second Friday of every month at Halifax Medical Center, France Tower Classroom D, Daytona Beach, FL from 6:30pm-7:30pm. Mended Little Hearts is important to me because my son was born with multiple congenital heart defects, and now that he is healthy and strong I felt it was important to start a local group and help the families of my area. I remember how important it was to me to have someone to reach out to who knew what I was going through. Visit our website for more information about MLH of Volusia County www.volusiacounty.mendedlittlehearts.net. We are also on facebook as Mended Little Hearts of Volusia County. You can visit either of those sites to get updates and see what we have been up to. The day after mother’s day 2008 I found out I was pregnant. My husband and I had tried for a long time to have a baby and to find out after Mother’s day was the best gift ever. Everything was going great during […]

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The 2012 Neediest Kids Championship at the TPC Potomac at Avenel Farm Golf Course

July 1, 2012
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The Neediest Kids Championship has become one of the premier events on the Nationwide Tour. Played at the TPC Potomac at Avenel Farm Golf Course, the 2012 tournament is set for October 4 thru October 7 and will again be televised worldwide on the Golf Channel. This event is more than just a golf tournament, it is a community-wide celebration with something for everyone including instructional clinics for adults and kids, Family Day on October 6, multiple Pro-Ams and networking events! Thursday of tournament week the professionals take center stage as they vie for their share of the $600,000 purse. Tickets FORE Charity allows 100% of the proceeds from ticket sales to go directly to Mended Little Hearts to help families with children who have congenital heart defects around the nation. Tickets may be purchased in honor of, or in memory of, a loved one. Click here to purchase your event ticket: http://events.constantcontact.com/register/event?llr=u5nowcdab&oeidk=a07e62oxp6s80f540db

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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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Pulse Oximetry Screening: An In-Depth Look at the Issues

July 14, 2011
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Pulse Oximetry Screening:   An In-Depth Look at the Issues

Pulse Oximetry Screening:  An In-Depth Look at the Issues Join us for a Webinar on Tuesday, August 23 8pm -9pm EDT This webinar is second in a series of three and is designed to give an in-depth look at issues surrounding pulse oximetry screening so that advocates can effectively communicate with their legislators.  Like the first webinar, this is for both new and experienced advocates and for people who would simply like more information on this important issue.  Participants will: • learn to distinguish myths versus reality about pulse oximetry screening. • receive information about a successful multidisciplinary site implementation of pulse oximetry screening. • learn the tools necessary to communicate this information to their legislators to effectively advocate for pulse oximetry screening in their state. Featuring: Gerard Martin, MD, FACC, Children’s National Heart Institute Elizabeth Bradshaw, MSN, RN, CPN, Children’s National Medical Center Amy Basken, National Advocacy Chairperson, Mended Little Hearts   System Requirements PC-based attendees Required: Windows® 7, Vista, XP or 2003 Server Macintosh®-based attendees Required: Mac OS® X 10.5 or newer After registering you will receive a confirmation email containing information about joining the Webinar. Space is limited. Reserve your Webinar seat now at: https://www3.gotomeeting.com/register/788801926

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Save the Date – Webinar – Pulse Oximetry Screening: An Introduction to Advocacy Issues

July 9, 2011
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Save the Date   Mended Little Hearts has partnered with the American College of Cardiology to Present: Pulse Oximetry Screening:  An Introduction to Advocacy Issues   This webinar is designed for anyone who wants to learn more about pulse oximetry advocacy—whether you are a new or experienced advocate.  Participants will: learn what pulse oximetry screening is and what it isn’t. learn benefits of pulse oximetry screening and obstacles to effective use of pulse oximetry screening. be able to identify key issues of pulse oximetry screening occurring at the federal level and the state level.  be provided with tools to constructively advocate in their home district This webinar will take place on Tuesday, July 26, 2011 at 8:00 p.m. EDT, 7:00 Central, 6:00 Mountain and 5:00 Pacific.

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