Every 10 minutes another name is added to the national organ transplant waiting list, almost every hour one life will be lost waiting for a life saving organ, especially hearts. At this moment over 100,000 men, women and children are waiting life saving transplants. Yet sadly, almost every hour one of them will die. Here’s your chance to help lower those numbers and make a HUGE difference in those who are in need of a life-saving transplant and have a blast while doing it!

On July 18, 2010, Gabriel’s Gift – a Congenital Heart Defect and Organ Donation Awareness organization will be participating in the Donor Dash, a 5k at Washington Park in Denver and we’d love to see you there with Team Gabriel! Even if you can’t participate in the race, you can still come out, put on your team shirt & cheer the rest of us, then join us afterward as we celebrate with great food & fun events.

Please click on the following link to register and be sure to choose Gabriel’s Gift for your team!
http://www.active.com/running/denver-co/donor-dash-5k-runwalk-201

Not in Denver but want to do something to change the circumstances of the lives of so many. Consider donating to Gabriel’s Gift Today.

Check out Gabriels Gift @ http://gabrielsgift.net or to become a LifeLine: http://gabrielsgift.net/lifeline

For years GE has been working on something that will revolutionize medicine as we know it today. From unidentified heart defects, missed tumors, blocked intestines – you name it – Vscan will find it. The General Electric Vscan is now being sold for $7,600 per unit as opposed to $100,000 – $115,000 for a ultrasound machine capable of the same technology. It was a dream for the CHD community to make sure every child is scanned – and while Pulse Oximetry is a MUCH needed beginning we can move that even further by identifying what type of heart defect a child or adult has at a VERY low cost to the patient and insurance. Check out the following video and the links below to learn more.

Aiden’s Angels, an organization founded by myself and my wife Tracy are going to be purchasing these devices worldwide to give as many children a chance at a beautiful life as we can.

Visit the GE Vscan Website to learn more or purchase one for your practice. Visit GE’s HealthyImagination Vscan Website by clicking here.

The Patient Protection and Affordable Care Law
a.k.a. H.R.3590

This is current U.S. law regarding to Congenital Heart Defects

SEC. 10411. PROGRAMS RELATING TO CONGENITAL HEART DISEASE.

(a) Short Title- This subtitle may be cited as the ‘Congenital Heart Futures Act’.

(b) Programs Relating to Congenital Heart Disease-

(1) NATIONAL CONGENITAL HEART DISEASE SURVEILLANCE SYSTEM- Part P of title III of the Public Health Service Act (42 U.S.C. 280g et seq.), as amended by section 5405, is further amended by adding at the end the following:

‘SEC. 399V-2. NATIONAL CONGENITAL HEART DISEASE SURVEILLANCE SYSTEM.

‘(a) In General- The Secretary, acting through the Director of the Centers for Disease Control and Prevention, may–

‘(1) enhance and expand infrastructure to track the epidemiology of congenital heart disease and to organize such information into a nationally-representative, population-based surveillance system that compiles data concerning actual occurrences of congenital heart disease, to be known as the ‘National Congenital Heart Disease Surveillance System’; or

‘(2) award a grant to one eligible entity to undertake the activities described in paragraph (1).

‘(b) Purpose- The purpose of the Congenital Heart Disease Surveillance System shall be to facilitate further research into the types of health services patients use and to identify possible areas for educational outreach and prevention in accordance with standard practices of the Centers for Disease Control and Prevention.

‘(c) Content- The Congenital Heart Disease Surveillance System–

‘(1) may include information concerning the incidence and prevalence of congenital heart disease in the United States;

‘(2) may be used to collect and store data on congenital heart disease, including data concerning–

‘(A) demographic factors associated with congenital heart disease, such as age, race, ethnicity, sex, and family history of individuals who are diagnosed with the disease;

‘(B) risk factors associated with the disease;

‘(C) causation of the disease;

‘(D) treatment approaches; and

‘(E) outcome measures, such that analysis of the outcome measures will allow derivation of evidence-based best practices and guidelines for congenital heart disease patients; and

‘(3) may ensure the collection and analysis of longitudinal data related to individuals of all ages with congenital heart disease, including infants, young children, adolescents, and adults of all ages.

‘(d) Public Access- The Congenital Heart Disease Surveillance System shall be made available to the public, as appropriate, including congenital heart disease researchers.

‘(e) Patient Privacy- The Secretary shall ensure that the Congenital Heart Disease Surveillance System is maintained in a manner that complies with the regulations promulgated under section 264 of the Health Insurance Portability and Accountability Act of 1996.

‘(f) Eligibility for Grant- To be eligible to receive a grant under subsection (a)(2), an entity shall–

‘(1) be a public or private nonprofit entity with specialized experience in congenital heart disease; and

‘(2) submit to the Secretary an application at such time, in such manner, and containing such information as the Secretary may require.’.

(2) CONGENITAL HEART DISEASE RESEARCH- Subpart 2 of part C of title IV of the Public Health Service Act (42 U.S.C. 285b et seq.) is amended by adding at the end the following:

‘SEC. 425. CONGENITAL HEART DISEASE.

‘(a) In General- The Director of the Institute may expand, intensify, and coordinate research and related activities of the Institute with respect to congenital heart disease, which may include congenital heart disease research with respect to–

‘(1) causation of congenital heart disease, including genetic causes;

‘(2) long-term outcomes in individuals with congenital heart disease, including infants, children, teenagers, adults, and elderly individuals;

‘(3) diagnosis, treatment, and prevention;

‘(4) studies using longitudinal data and retrospective analysis to identify effective treatments and outcomes for individuals with congenital heart disease; and

‘(5) identifying barriers to life-long care for individuals with congenital heart disease.

‘(b) Coordination of Research Activities- The Director of the Institute may coordinate research efforts related to congenital heart disease among multiple research institutions and may develop research networks.

‘(c) Minority and Medically Underserved Communities- In carrying out the activities described in this section, the Director of the Institute shall consider the application of such research and other activities to minority and medically underserved communities.’.

(c) Authorization of Appropriations- There are authorized to be appropriated to carry out the amendments made by this section such sums as may be necessary for each of fiscal years 2011 through 2015.

First of all, thank you ALL for Voting. Members from Mended Little Hearts: Mississippi designed the car and in Round 1 of voting, we received 13,640 votes!!! As of Monday, March 15th 2010 Round 1 came to a close (meaning no new cars can be submitted) we currently are in 6th place of votes!!!! We have to last until April 1st in the Top 10 positions.

View the Sponsifier page here, you will have to click on “Most Votes”

As of writing this, a car has 6 days left of voting and is 95 votes down from us. Clearly it has the chance to overtake us. If it does we’ll drop to 7th place. However the next closest car only has 7,255 votes with 3 days left to vote. I really doubt that a campaign could be launched on an existing car to drive it up to more than 13,640 votes in the remaining time. We are decently secure in the Top 10 positions, in my opinion.

On April 1st will start “Round 2″ – if the CHD Awareness Car remains in the Top 10, beginning April 1st we will all have to vote again, but only for those 10 cars. We have to win that part. There are multiple parts to “winning” this contest – and winning “Round 2″ is 20% of it. That’s how everyone is going to have to help, we HAVE to win! However this time, people that go to the page will be able to see us, because there are only 10 cars to vote for. So we will get regular people too (I think it’s seriously one of the best designed, so we have a GREAT chance to get people who have no idea about CHD to vote on the car).

The rest from Sponsafier.com:

Qualified Judging: Between April 16, 2010 and April 22, 2010, qualified judges selected by Sponsor in its sole discretion, will review and judge the ten (10) finalists according to the following criteria:

1. Originality of the Design when compared to other Designs (20%);
2. Feasibility of the Design to be applied to a two-seater NASCAR show car  (20%);
3. Creativity demonstrated by the application of user-uploaded images and/or pre-loaded Sponsafier graphics to the Design to the Design (20%);
4. Number of votes received via the process set forth in Section 6(a)(ii), above (20%);
5. Ability of the Design to inspire consumers (20%).

The finalist whose design the judges deemed best according to these aforementioned criteria will be the potential Contest Grand Prize winner. In the event of a tie for the Contest Grand Prize, the qualified judges, in their sole discretion, will select the potential finalist or Contest Grand Prize winner from among the tied entrants based on the entrant who received the highest score in the “feasibility” category.  In the event of a further tie, the Sponsor, in its sole discretion, will select the potential winner of the applicable prize from the tied entrants based on the entrant who received the highest score in the “creativity” category.

Don’t waste time, click the car!! An easy way to get CHD Awareness in a national spotlight, having this car in the NASCAR 2010 Sprint All-Star Race!!!!! We’ve got until until March 15th to get 50,000 votes. Everyone can vote once per day. Just remember, go to blog4chd.com every day and click the CAR.

Secondly, share this with everyone in your social media spaces. You can click the “Share” button on this page and easily share it with your MySpace, Facebook, Twitter and other social network friends. Otherwise you can tell everyone, go to blog4chd.com every day and vote for us in NASCAR!!!

(Designed by Mended Little Hearts of Mississippi (MHL: Mississippi on Facebook) Let’s get it to WIN!!!!)

VOTE FOR CHD AWARENESS IN NASCAR, CLICK HERE TO VOTE!

This video is dedicated to the Angels within it and everywhere.

This video is dedicated to the heart warriors within it and everywhere.

I am blessed to have had the opportunity to speak to such amazing heart parents, friends and family. It was an amazing night for both our warriors and our Angels to be celebrated while bringing to attention what is really happening in the Congenital Heart Defect Community. Finally, we have an organization that cares about not only the survivors but the Angels as well. We’re rather tired of simply being handed a book, “How to grieve” and sent on our way.

It was truly a beautiful moment to watch children show each other their scars so proudly and play together. It really brought joy to my heart.

We had families who’s children had transplants, operations and those whose beautiful sons and daughters were taken too soon. There were tears shed, candles lit in honor of our children and our friends children. We shared the stories of Cora McCormick, Pierce Helms and others.

The Angel and Warrior videos that we’re shown are being uploaded to YouTube now and will be posted in the AM. (There rather big files).

I am so honored to be a part of something that my heart says is what we need and we aren’t addressing. Many of the Angel parents feel alienated by groups whose focus is only better options instead of preventing death. Many of the warriors need more help than a few meetings. It is our goal to provide more options and help for both types, warriors and Angels that simply are not available.

I’ll share with you my speech from this evening.

Good Evening and Welcome, Thank you all for attending the innagural 1st Annual Denver’s Day for Hearts. My name is Levi Beers, less than 4 months ago my 1st born, a son named Aiden, succumb to the very thing we all want to do more about: Congenital Heart Defects. Tonight it brings me great joy that Denver and over 100 cities across the world are striving to do more for the families, the children and the adults who courageously fight living with a CHD and for us to remember those we have lost too soon.

Stepping back one year from this moment my wife and I were filled with the excitement of knowing we were with child – until those words, “There is something wrong with your son’s heart” brought shock waves of emotions, pain and fear of the unknown. Every year 40,000 families face this same reality: their child has a heart defect. Tonight we have the honor of having a some of those families with us.

It is the goal of this “Day for Hearts” from each year herein on February 13th to bring more awareness to the general public about the #1 birth defect and the #1 cause of infant death in the United States as well as to bring more research, support and options for the nearly 2 million American’s living and affected by Congenital Heart Defects along with their families.

Since the first “Blue Baby” operation was performed by Dr. Alfred Blalock, Vivien Thomas and Dr. Hellen Taussig in 1944 many advancements have been made improving the quality of life for many CHDers. In the last decade mortality rates for CHD’s declined by almost 30%. Still, more than 4,000 children each year will never see their first birthday. In 2004 the National Center for Health Statistics reported 5,810 newborns died from complications due to Congenital Heart Defects – more than half of which were babies whose parents never knew their child was anything but healthy.

Newborn Screening Guidelines within the United States vary state by state. There are core conditions however that are checked for every baby born in our country, some of these include: Maple Syrup Urine Disease (affecting less than 1 in 100,000 newborns), Congenital Adrenal Hyperplasia (affecting 1 in 25,000 newborns) and Congenital Deafness (affecting 1 in 5,000 newborns) however no state routinely screens all newborns for Congenital Heart Defects, affecting approximately 1 in 100 newborn children.

Currently the only way CHD’s are identified prenatally are by ultrasound scans during pregnancy, a 1998 study from Southwestern Medical School in Texas reported that only 1/4 of heart defects are identified prenatally. Many centralized hospital studies around the country state that neonatal examination within the first 3 weeks of life fails to detect more than half of newborns that have a Congenital Heart Defect when the testing method is a simple stethoscope listening for a heart murmur. In 1944, both Dr. Blalock and Dr. Taussig knew that blue oxygen deprived newborns had a heart malformations. In 2006 Norwegian doctors published one of the largest clinical trials using Pulse Oximetry and checked half of all babies born in the country. The results: Pulse Oximetry detected 3/4 of critical heart defects that had been previously missed. For every 2,000 newborns screened, they estimated 1 child’s life was saved. The cost-benefit ratio compared favorably to their current practices of newborn screening for other less occurring defects. January 2007 Swedish doctors published an even more methodical study of nearly 40,000 newborns and showed that oximetry entirely eliminated death from missed critical heart defects.

There are 35 identified Congenital Heart Defects ranging from simple to severe, 51 surgical operations to repair them and 4 types of catheterization interventions in use today. Yet for so many children it’s not enough to save their precious life.

Despite the prevalence and seriousness of Congenital Heart Defects and organizations like the National Heart Lung and Blood Institute stating “CHD’s are a serious and underappreciated global health problem” government funding is nearly non-existant. Of every dollar the U.S. government spends on medical funding a fraction of a penny is directed towards CHD research, the American Heart Association directs one penny for every dollar donated to CHD research. It’s a fact that nearly twice as many children die from CHD’s in the United States every year than all forms of childhood cancers combined. Yet funding for pediatric cancer research is 5 times higher than funding for CHD research. The cost of inpatient surgery to repair these CHDs currently exceeds $2.2 billion dollars per year. We need less invasive surgical options and better long term prognosis for our children to give them the lives we want them to have.

I know from experience that hearing “Your child has a heart problem” completely changes a family forever, there are many teary nights, many of us plead with God – let it be us, not them. We sit and await surgery day with high expectations and the greatest feeling of fear we will ever have. 1 family out of 10 will be sent home with a book, “How to deal with grief” instead of taking their child home. For those parents without insurance their lives with financially never be the same reguardless of the outcome. Surgeries can cost from $100,000 to $1,000,000 or more. Depending on where a familiy lives determines the type of care they can receive, here we are lucky to have Children’s Hospital of Denver with surgeons like Dr. Cambell and Dr. Mitchell, who have together performed almost 10,000 surgeries in their careers. For others they must fly thousands of miles to a medical facility capable of correctly diagnosing and repairing their child’s heart defect.

Over the last few months since my son has passed away I’ve been busy working to bring more to the Congenital Heart Defect Community and individual families across the country. On December 6th of 2009 I had heard a heart breaking story, a mother named Kristine was at home with her new baby and her husband. Late one night little Cora woke up hungry and Kristine began feeding her. Almost immediately Kristine knew something was wrong, rushing to the hospital with police escort – it was too late, little Cora had been taken to her heavenly home because of an undiagnosed heart defect. I reached out to Kristine and have been friends with her ever since. Kristine comes from a small town – when she asked her OBGYN how could this be prevented, she was told – there is no way to diagnose a heart defect – that it rarely ever happens. Proof that even some within the medical community need up to date on even the most basic practices of pediatric cardiology. Gabriel’s Gift who has sponsored this great event provided Kristine with free Mental Health Support Services a thousand miles away, because being sent home with a book on grieving just isn’t enough.

Last month I came across a mother who had been in the Cardiac Intensive Care Unit in Little Rock for nearly a month. Her son Pierce had a severe congenital heart defect, while awaiting transplantation his stats dropped so low they had to immediately perform surgery on his failing heart. Pierce held on for many days after but finally succumb to his heart defect. While they were in the hospital Saving Little Hearts was able to provide all the families in the Little Rock CICU including Pierce and his mother with Care Bags, items which no one wants to leave their child to get but needs desperately.

At the end of January this year I wrote Governor Ritter a personal letter with a request, have Colorado proclaim February 7th – 14th as Congenital Heart Defect Awareness Week in the State of Colorado. I was told by his staff that it was too close to get something like that. Four days later I received a Proclamation from Governor Ritter.

Congenital Heart Defects are the most common birth defect and are the leading cause of birth-defect related death. Individuals born with CHD are threatened by death due to the severity of the defect, belated detection, lack of donor hearts or the failure of medical intervention. More than 40,000 infants are born each year with heart defects in the United States. Early diagnosis and treatment of CHD may lead to longer and more active lives for thousands of children and adults diagnosed with this devastating defect. Increased awareness will save lives through an improved probability of early detection. – Bill Ritter, January 26th 2010.

By combining efforts and doing more we can really make an impact on not only the families in Denver that face a Congenital Heart Defect Diagnosis – we can also help the families of the 1 million children born worldwide every year with a heart defect. Tonight we gather for our children, here or in heaven and the millions affected just the same.

By the Order of Colorado Governor Bill Ritter, Jr. Colorado has Proclaimed:
February 7^th-14^th, 2010
Congenital Heart Defect Awareness Week

“increased awareness of CHD will save lives” – Bill Ritter, Jr.

Gabriel’s Gift, a Denver based non-profit organization dedicated to raising CHD Awareness and helping CHD families with no-cost Mental Health Care, Financial and Insurance Assistance cordially invite you, your friends, your children and your family to the 1^st Annual Denver’s Day for Hearts!

February 13^th 2010 @ 6:30PM – 8:00PM
Hampden Executive Plaza
3525 S. Tamatac Dr. Suite 140
Denver, CO 80237

Let us know if you would like to attend and how many will be joining you. Seating is limited. You can visit http://gabrielsgift.net/dayforhearts (After Feb 3rd)
or call (303) 953-9560 (anytime)

Event Schedule

Welcome / Introduction (spkr)

CHD’s by the “numbers” (spkr)

Meeting CHD Survivors (spkrs)

CHD Angels Intro / Candle Lighting / Tribute Video

CHD Luminaries (Guest Participation)

CHD’s / Gabriel’in 2010 (spkr)

A rememberance, dedication and awareness to the Angels of Congenital Heart Defects

thank you Jessica Goffard as a CHD Survivor and Advocate, you bring and inspire so much