January is Birth Defects Prevention Month

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Birth defects are common, costly and critical. Every 4½ minutes, a baby is born with a major birth defect.  Professionals, community groups and the public can act to reduce the risk of certain birth defects, detect those that occur as soon as possible and prevent secondary complications.

Heart defects are the most common birth defect and leading cause of birth defect related infant death.  While, most heart defects are not preventable, we encourage women to make a PACT for their own health and the family they may have one day.   All women, including teens, can lower their risk of having a baby born with a birth defect by following some basic health guidelines throughout their reproductive years.

Plan ahead

  • Get as healthy as you can before you get pregnant
  • Get 400 micrograms (mcg) of folic acid every day

Avoid harmful substances

  • Avoid drinking alcohol and smoking
  • Be careful with harmful exposures at work and home

Choose a healthy lifestyle

  • Eat a healthy diet that includes fruits, vegetables, whole grains, low fat dairy, lean proteins, and healthy fats and oils
  • Be physically active
  • Work to get medical conditions like diabetes under control

Talk to your doctor

  • Get a medical checkup
  • Discuss all medications, both prescription and over-the-counter
  • Talk about your family history

Women and their loved ones can participate in their PACT and take these important preventive steps that can lead to a reduction in the number of birth defects.

Advocacy Success – Increased CHD Funding!

Your efforts are working!  

Congress is working hard to wrap things up before the end of the year.

We are thrilled to report that the anticipated budget includes an increase of $1.1 million from $2.9 million to $4 million in 2015 to fund public health research and data collection through the Centers for Disease Control and Prevention, as outlined in the Congenital Heart Futures Act.

Additionally, congenital heart disease was included, again, in the Department of Defense’s Peer Reviewed Medical Research Program, which is funded at $247.50 million, an increase of $47.5 million! This is a competitive grant opportunity for which CHD researchers can apply. We also had members of the CHD community reviewing the grants.

We must continue our efforts!

Each year, advocates, like you, connect with their lawmakers through emails, phone calls and visits.  Your voices are being heard – despite serious budget cuts, we continue to see increases in CHD funding opportunities.

We are making progress, but there is still a huge need for funding of public health research and data collection to better understand congenital heart disease across the lifespan.

Your are the answer!  Your story matters.  Take Action:

Sign a petition.

Write your legislator.

Donate to support our advocacy efforts.

Join us in Washington D.C.!

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Advocacy Success – Newborn Screening

PCHA has been supporting the efforts of the March of Dimes to ensure passage of the Newborn Screening Saves Lives Act.  We have reached out to you in the past to contact your legislators about this key support for screening including CCHD screening.  We wanted to you with an exciting update!!

From our Friends at the March of Dimes:

Breaking News: Senate Passes Newborn Screening Bill!

We are one step closer to the finish line! The U.S. Senate passed H.R. 1281, the Newborn Screening Saves Lives Reauthorization Act (NBSSLRA), by unanimous consent on December 8. The bill now returns to the House for ratification of an amendment included by the Senate.  If the House approves this final change, the bill will go to the President for signature into law. Thanks to all of you for your commitment and always answering the call to action! It is because of this dedication and all of your efforts that legislators listened and worked to get this important legislation passed.
As a reminder, NBSSLRA extends federal programs that provide assistance to states to improve and expand their newborn screening programs; supports parent and provider education; and ensures laboratory quality and surveillance for newborn screening programs. For more information, check out our press release.
Your hundreds of phone calls, letters, meetings and messages letting legislators know how important this issue is to you made a real difference! Congressional offices let us know they were hearing from constituents and stakeholder groups alike about the urgent need to pass this bill. We want to also thank our champions Senators Kay Hagan and Orrin Hatch and Representatives Lucille Roybal-Allard and Mike Simpson for their steadfast efforts to help improve the health of babies nationwide.
Stay tuned as more news and movement on this bill develops throughout the week!

 

#GivingTuesday

Click here to donate, today!

Give Time.
Give Money.
Give Hope.

Give Big

Give Time: Join our 1 Voice / 40,000 Strong Campaign

Give Money: Click here to donate, today!

PCHA works hard to empower patients.

Your support brings the patient voice to Washington D.C. through our upcoming Legislative Conference and ongoing advocacy activities as we work to support the 100’s of millions of dollars of research funding available to CHD.

Your donation is needed to help us bring transparency to patient care.  We are working with patients, parents and medical providers to create education and resources to help patients and parents make informed decisions about CHD care.

We have a lot planned for 2015 that needs your help!!

Patient Education – Our Transparency Project would like launch its “Questions” series.  Downloadable resources that provide tools for parents and patients to use to talk with their doctors and surgeons.  By the end of the year, we will provide additional robust data driven information on our website.

Physician Education – PCHA has been invited to participate in several upcoming medical conferences, presenting the imporatance of patient/family involvement and the need for transparency to truly accomplish this.

Research Funding – Our Legislative Conference kicks off a great year of advocacy.  We look forward to supporting research funding, looking at new policy opportunities and building legislative champions.  We will also be working hard to bring opportunities for all of our amazing advocates to get involved!!

Give Time: Join our 1 Voice / 40,000 Strong Campaign

Give Money: Click here to donate, today!

 

Together, we will Conquer CHD!

Walking to Washington

Walking to Washington

Miles Walked: 610/860  

Donations Earned: $500.00

Join me as I ‘walk the walk’ in preparation to ‘talk the talk.’  I am walking from the Pediatric Congenital Heart Association National Office in Madison, WI ‘arriving’ in Washington D.C. just in time for the Congenital Heart Legislative Conference February 25-26, 2015.

Follow my progress here.

Donate Now

Just a few weeks left, a few hundred miles and a few hundred dollars.

Help me make it to the finish line and reach my goal of 850 miles/$850!

By clicking the button above you can donate by credit card or virtual check.  If you would prefer, you may mail a sponsorship check to PCHA,14 Ellis Potter Court, Suite 100, Madison, WI 53711.

Why Donate?

Every 15 minutes a baby is born with a heart defect.  Every 15 minutes, a new challenge is thrust upon a family. There is no cure. If a baby is lucky enough to survive, they are faced with the life long consequences of congenital heart disease.

During one of those 15 minutes, our world was forever changed by congenital heart defects with the birth of our youngest son.

I am walking to help Conquer Congenital Heart Disease.  I want to ensure that all children, especially my son, not only survive, but thrive to live a long, productive life with congenital heart disease.

I am also walking to support the Pediatric Congenital Heart Association.  In just one short year, it has demonstrated a profound impact uniting both the medical and the patient communities to join in the fight to Conquer CHD.

The Pediatric Congenital Heart Association’s mission is to “Conquer Congenital Heart Disease.”  It is founded on the key purpose to be the resounding voice of the pediatric patient population through collaboration in education, research and advocacy.  PCHA works to reduce the impact of congenital heart disease while striving to realize a world free from it.

Large or small, any donation will benefit children and adults with heart defects.

Thanks!

Amy Basken – Founder and Director of Programs at PCHA

Donate Now

In The Thick Of It

I’m having one of those days.

All I needed to do was reheat a bowl of soup for lunch.  We have been without a microwave for about a month, now, so heating anything is not quite as simple as it could be.  I dumped the leftovers into the small sauce pan, turned the burner on high and stepped away to check my email (of course.)  As I returned to the warmed soup, I became distracted by the phone, knocked the handle of the pan and proceeded to dump soup all over me, the counter, the floor, and of course the burning hot stove-top.  I was in the thick of it.  “It can’t get any worse,” I thought.  Until the dog came to investigate and delivered sloppy, soupy footprints throughout the rest of the kitchen.

There I sat, right where I was, lost in the mess around me.  I couldn’t go back. I certainly, couldn’t stay there.  I could only go forward.

As I was checking-in on social media, still vaguely smelling like soup, I was reminded of similar feelings surrounding Nicholas’s surgery.  Having our third child was supposed to be pretty straight forward.  Until I was distracted by his heart defect.  I had worry, fear, and anxiety dumped all over me.  And there I sat.  I sat there for quite a while.  I wanted to go back – it wasn’t supposed to happen this way.  But, I couldn’t.  So, I sat there some more, right in the thick of it. Until, I was strong enough to go forward.

Besides the frustration of a very, very messy lunch, my heart aches today for the countless people who are still in the thick of it.  My heart is breaking for those who are saying good-bye. I am worried along side those who are awaiting answers. And, I find hope in those who are starting to take steps forward, finding the strength to emerge – from the thick of it.

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Amy is the Director of Programs for the Pediatric Congenital Heart Association. She is the mother of three including Nicholas who is now 9.

You = Winning! The Importance of Advocacy

Throughout the month of October, PCHA is helping advocates meet with their legislators in district.  In this post, Tiffany takes a humorous look at why it is important to rise above the politics and meet with our legislators.  For more information about in-district meetings, visit our website or contact advocacy@conqueringchd.org.

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Although the polls may indicate the current recess on the Hill is a much needed respite for the general public, for advocates it is the perfect time to visit your legislators’ office.  Whether your elected official is involved in a re-election effort or not, call their district office to schedule an appointment to meet with them while they are in-district during the month of October.  If your elected official is being challenged in an election, call the campaign office of their opponent and schedule an appointment.

The visit(s) should be relatively painless as your mission is not to ask for money.  Your goal is simply to create or refresh their CHD awareness by telling your story and introducing, or re-introducing, the realities of congenital heart defects.  Your story, your voice and your visit help humanize the cause.  Many incumbents trying to retain their seat may be trying to change the public’s perception of their image by refreshing their vision and commitment to the needs of those they represent.  Many challengers of current House seats are looking for opportunities to better understand the needs of those they represent.  Either way it is a great time for a visit, your story and CHD awareness.

But before you go, a quick Q & A that you may find helpful!

Q: Ugh!  I can’t stand my representative.  I will never, ever, ever vote for them so why should I visit them?

A:  Trust me, I can relate…oh, how well I can relate!  BUT, I try to keep in mind that my representative was elected to represent me.  Telling my story and sharing the realities creates the opportunity for them to truly represent me, represent my child, and represent my family.  Whether or not they use the opportunity to represent me better as a constituent is up to them.  And whether or not they use the opportunity may never have an impact on my opinion of them or my vote.  But creating the opportunity will give me a chance to get a better ROI on my tax dollars that constitute their salary!

Q: Do you know what my representative said about (insert any issue here) or voted regarding (insert any issue here)?  How can I even speak to them without spitting on their shoe?

A:  Again, I can truly relate!  It may take an enormous amount of self-control to keep my voice loathing-free but I know I will move mountains for my son and those like him who are affected by CHD.  When I meet with my representative, I use my story to try to appeal to their emotional side as a fellow parent.  I use the realities to appeal to their intellectual side as a representative of my district and one who has some aspect to funding needs I want to discuss on a subsequent visit.    Bottom line, when I walk into their office I am my son’s mom.  My goal is to get their attention and gain their support for the needs of my son, the needs of CHD.  I understand that we may never agree on other issues in our country or world but if I can get them to support or agree on the needs of CHD, I can work with that.

Q: Why worry about my representative if they are likely to lose or why work with the challenger if they are unlikely to win?

A:  Because you just never know!  You don’t necessarily know who will win or who will lose.  You will win either way if you cover your bases with both the challenger and the incumbent.  You win because you began a potential relationship with the winning representative.  You win because the candidate who didn’t win may be able to be an ally in the fight or a great source for contacts who will be.  You win because both have heard your story and a little more awareness was created in the process.  You win because successful and unsuccessful candidates generally maintain some sort of a political voice that you may be able to use.  You win because there is a good chance it won’t be the last election run for either one.

So to you summarize: You = Winning!

For more information about in-district meetings, visit our website or contact advocacy@conqueringchd.org.

Tiffany headshot  Tiffany Mytty-Kline has been a tireless advocate for the congenital heart community.  She has worked to unite others in peer-to-peer support, raising awareness and both local and federal advocacy.  As the mother of two boys, the oldest of whom has a complex congenital heart defect, she knows the incredible impact CHD can have on a family.  When she is not advocating for her son or the CHD community, Tiffany is an adjunct teacher and the director of employee relations for a midwest truck dealership.

In-District Visits

Email advocacy@conqueringchd.org today, to let us know YOU want to participate in in district visits!

 

COFFEE

There has been a lot of talk in the media, lately, about raising money for research.  It certainly sends a very powerful message when millions of people come together to raise research funds for a cause.

We need you to send a message to Congress about Congenital Heart Defect research funding.

The Federal Government is the largest funding source for CHD research:

  • The National Institutes of Health supports 10’s of millions of dollars, including supporting the Pediatric Heart Network for research.
  • The Centers for Disease Control and Prevention currently have $2.9 Million allocated for CHD data collection
  • The Department of Defense has $200M in research funding that CHD research projects can apply for.

But, this pales in comparison to what it could be.

We challenge you, not to dump ice on your head, but to take a moment and meet with your legislators at their home offices while they are home, working in district, during the month of October.

Participating is simple:

First, email advocacy@conqueringchd.org to let us know you want to participate in an in-district meeting and we will walk you through the process, answering any questions you may have along the way.

Then, check out these great online resources that can help.  You’ll find tools to help you prepare for your visit, create personal cards to leave behind and printable materials to share with your legislators.

If you are not quite sure you are up for the challenge, feel free to email advocacy@conqueringchd.org for more information.

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A Time to Gather

A Time to Gather (Mile)Stones Together: The Importance of Marking Our Days

steenman Garvera

As Solomon said in Ecclesiastes, “There is a time for everything–” including a time to celebrate.

Sometimes, it’s easy for the days to blur together–after all, they often fly by! I’ve heard my more cynical friends scoff at those who attach meaning to new year’s resolutions, or even celebrate New Year’s Eve at all–after all, they say, it is just another day. They argue that the divide between last year and the new year is completely arbitrary. What is age but a number? What is a birthday but just another day older, like every other day?

As a heart mom, I’ve learned that birthdays are more than an excuse to have cake and receive special gifts.They aren’t even “just” a victory–because every precious day is a victory. I’ve come to see birthdays as a time to reflect on where we started and on how far we’ve come since then. I’ve learned the importance of marking our days as a way of counting our blessings together–a “gathering of stones,” so to speak. Marking days with observances, as well as gathering stones, is a cultural practice that spans history and geography. Living in Nepal, I saw where people had gathered stones to create shady places for travelers to meet, rest, and reflect during long journeys. In Mongolia, I saw ovoos–piles of stones where travelers gave thanks to the elements for safe passage. Other cairns serve as markers for mountain summits, guideposts on paths, or memorials to historical events. in other words, they help us find our way and they connect us–fellow travellers–to each other.

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Like PCHA, my son Kieran also celebrated his birthday this month. As a baby, I would hear about all the milestones he was “missing,” when in reality, he wasn’t missing them at all–he was just catching up to them! Now, when I look back on how he wasn’t talking by his first birthday and I compare it to the picture below, which shows how proud he is for designing and making his own birthday cake, I realize just how far we’ve come in the past 6 years. In a system filled with benchmarks for children–be they developmental charts at the pediatrician’s office or educational assessments at school–we in the CHD community can come together and celebrate our own milestones. Together, we can gather these blessings like stones and put them on the map of our own unique journeys. My guess is that if we gather our blessings together, they would look something like Swiss cairn pictured above, which marks the summit of a mountain. It’s no coincidence that my son’s middle name is the Nepali word for “mountain.” It’s because we knew even before he was born that he would reach the summit of his special journey someday and that when he saw the view from the top, he would know it was all worth it.

There’s a reason, I believe, for our tradition of sharing birthdays and other holidays with family and friends. A reason that can include cake and ice cream, but that also includes “a time to gather stones together” as a way to mark this day as a place worth setting another guidepost on the map of our journey. I am happy that, as a community, we are invited to celebrate PCHA’s first birthday together. Research, treatment, and outcomes are always evolving in the CHD world. As heart parents and as a community, I hope we will saying, “what a difference a year makes!” for many years to come.

 

Margaret King bioMargaret King is a stay at home mom who loves spending time with her family, avidly reading, community gardening, traveling, and exploring the outdoors. She is currently working on a young adult fiction series and enjoys flash fiction and science fiction writing as well. Margaret has worked in the past teaching English abroad in Nepal and Mongolia, which she counts among the best experiences of her life, along with her heart family journey which she is so happy to share with our readers.

 

Take Action to support Newborn Screening

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PCHA supports the screening of newborns for critical congenital heart defects. This legislation indirectly supports CCHD screening oversight efforts.  

From our friends at the March of Dimes:

We’re at a critical point where YOUR voice can make a real difference! The House passed the Newborn Screening Saves Lives Reauthorization Act (H.R. 1281) in June; however, the Senate failed to take action on final passage of the bill before adjourning for the month of August. Please contact your Senators and tell them to take swift action to pass this important legislation when Congress returns in September. There aren’t many days left for the Senate to take action.

Tell your Senators to pass the Newborn Screening Saves Lives Reauthorization Act.

The Newborn Screening Saves Lives Reauthorization Act will renew federal programs that provide support and guidance for state efforts to ensure that every newborn is tested for at least 31 conditions present at birth which, if undetected and untreated, can lead to serious disability or death.  Please make your voice heard on behalf of babies – they are counting on you!

P.S. Mark your calendars! September 8th will be a National Newborn Screening Saves Lives Call-in Day if the Senate hasn’t passed the bill.

Taking action is easy:

1) Find your Senators at Senate.gov

2) Call the DC office number listed or complete the online email form:

Simply tell them to “Pass the Newborn Screening Saves Lives Reauthorization Act”

3) If you take action, please Tell Us About It!