5 Things You Shouldn’t Say to a Heart Dad

The Pediatric Congenital Heart Association strives to empower whole families dealing with congenital heart disease.  That includes you, Dad.  Thanks, Chris for the great reminder! Dad, we’ve got your back and will strive to be more intentional!

Let’s just put it out there: for a long time Dads have gotten a bad rap in the media.  We don’t know what we’re doing, we can’t clean a thing, we only care about beer, and kids?  Well they just baffle us.  It all came to a head a few years ago with this epic Clorox ad:

DumbDad1

 

That, and another diaper ad where they tested a diaper’s strength by “leaving kids with dad” really started to change things and the portrayal of Dads is shifting from more Homer Simpson to dedicated, loving parent.  I’m all about poking fun at myself – heck, you’ve seen it on my blog countless times – but I also refuse to be labeled as incompetent.  When you throw a complex Congenital Heart Defect into the mix the result is a new normal.  So here’s a few things that anyone (both guys and ladies) shouldn’t say to a Heart Dad:

1.  Man Up

The idea of toughing things out and “being a man” totally doesn’t apply to a Heart Dad, I don’t care what you say.  I could’ve never dreamt up the things we’ve gone through with Nolan…and honestly, nothing could have prepared me for what we went through.  Being a Heart Dad is emotional (another traditionally “non-man” thing) and exhausting.  When it beats you down – and it will – it isn’t a sign of how manly you are.  Even though guys have a hard time showing emotions or asking for help, we do need a lot of support from others to make it through this.

Say this instead: “Dude I can’t imagine what you’re going through.  Let me know how I can help.”  Which leads me to my next thing…

2.  Let me know how I can help (but never help)

We’ve all been subject to this one: everyone wants to help, but how many people actually show up?  I’m not trying to sound mean or ungrateful, but there are times where – YES- you need that help…and where is everyone?  The offer to help is great, but good intentions don’t equal actual help!

Say this instead: “Hey man, I wanna bring you guys dinner: how does tonight sound?”  We sometimes have a hard time asking, so just offer!

3. Does this mean no sports?

Yep, you guessed it.  My life became a failure once my son was born with half a heart and probably wouldn’t be the Yankees centerfielder of the future.  Woe is me.

CmonSon

Believe it or not – and this will shock you – some Dads are about more than sports.  Fellow men: we’ve come to grips with the reality that sports probably won’t be a big thing in our home…and it’s alright!  So what if my son may not play baseball?  He’s alive right now and kicking CHD’s butt…and that’s what I want to cheer on.

Say this instead: “Bruh: your kid’s really doing this thing!  Awww yeah!” Or something positive and supportive along those lines.

4.  Guys don’t do that / Awww must be mommy’s day off

It drives me crazy when Dads get stereotyped but it also drives me nuts when Dads stereotype one another.  In this new normal, there could be lots of things you’ll start doing that maybe you’ve never done before: groceries, more cleaning, LOTS of laundry, dispensing medications, struggling through feedings, etc.  I can’t stand it when guys have this pre-set list of duties in their heads, as if it makes you less manly to wash a dish or two.  You know what?  Tonight I helped make dinner, gave 3 kids a bath, did a load of laundry, washed a sink of dishes, fed 2 picky kids and tube fed another, swept the floor, and picked up toys off the floor, and read the kids books before bed.  To me, that’s some manly stuff right there.  Guys it’s not enough to just bring home the bacon.  You need to pull your own weight *mic drop*

Oh wait, I’m not done.  For everyone else, please don’t trivialize a Dad who is out there trying.  It’s bad enough we had to see our kids struggle for life: I don’t need your fake pity in the grocery store.  Heart Dads do a great job of taking care of their kids…it’s not “Daddy is the babysitter” time or “Mommy’s day off.”  It’s called being a parent. *now the real mic drop*

Say this instead: “I don’t know how you do it, but you’re doing a great job!”  It’s not an ego boost as much as it’s simple positive affirmation.  This journey is new for us, and it’s new almost daily: we’re doing our best to get through it without our kids being all jacked up, so a little kindness towards us goes a long way!

5.  Nothing

This one is a toughie because I don’t think it’s something that’s done intentionally.  I’ve been on multiple CHD websites and facebook groups, and I often see posts for advice that feature the same wording “Hey heart Mommies” or “Any heart Moms out there know about…”

I know you’re not intentionally leaving out the Dads, but unfortunately it’s there and for awhile I would answer these posts with “Heart Dad here…” because I wanted to show that, hey…we know stuff too.  There are people out there who write “Hey heart families”…and kudos to them.  Again, I’m not saying you’re wrong when you write things to other Heart Moms…it’s important to have those connections too.  But part of why I started my blog was because there really wasn’t a lot out there for Heart Dads: I didn’t see a lot that was honest and humerous and written in a way that I could relate with.  And you know what I’ve discovered?  There’s A LOT of Dads out there who are looking for the chance to have a voice too; they’re looking for the chance to be connected and have a seat at the table.  We don’t want to be portrayed as the dudes in the background who help out every now and then…we want to be a major player, and we can be!  Sometimes you just have to remember to leave room for us at the table.  I appreciate every Heart Mom out there for giving birth to our Warriors, for being nurturing and kind and for keeping us all going without running into traffic.  Heart Dads: you’re important too, and we’re all in this together.

Say this instead: “What do you think?”

BlogHeadshotChris Perez (aka HLHS Dad) lives just outside Charlotte, NC with his wife and 3 sons – including Nolan, who was born with HLHS in 2012.  He is the author of Half Heart. Whole Life: an HLHS Dad’s Blog, where he shares his journey as a heart dad with honesty, humor, and the realization that dad’s just handle things differently. In his spare time – if such a thing exists – Chris enjoys New York Yankees baseball, playing guitar, and memes.  You can visit Chris’ blog at http://hlhsdad.com.

 

Be The Forest

One of the founding principles of the Pediatric Congenital Heart Association is collaboration.  We recognize that it takes a strong network of people to succeed, whether it is advocating, educating, or simply just making it through the day.  As Chris describes, we all need to be part of the forest.

ShakingHands

I’ve said it once and I’ll say it again: Heart Parents are strong.  There’s something about the combination of worry, knowledge, lack of sleep, and ungodly amounts of caffeine that make us nearly superhuman.  There’s no one tougher than us and our kids, right?  I like to compare our kind to the mighty Redwood tree.  You look at them and are amazed at how big they are and how strong they look…they’re a marvel of nature.

Despite our ability to kick into beast-mode nearly at will, there are in fact times where we stumble and fall.  We get stressed out, we burn out, the hospital bills arrive, the van breaks down, your kid threw up his entire feed…AGAIN.  Sigh.  And suddenly we go from Redwood to dandelion, just ready to blow away at the next little thing.  You ever get this feeling?  Or is it just me?

ALittleHelp

Here’s an amazing fact: I read somewhere recently that while Redwoods are absolutely gigantic and look so very strong, they actually have a very shallow root system.  That seems absolutely insane, considering how huge those trees are, but it’s true.  The powerful thing I learned from this is that while Redwood roots are shallow, they extend outward to support one another.  This keeps them from starving, this keeps them from blowing over in the winds and storms…each other.

Please realize, Heart Moms and Dads, that despite how alone and frustrated you might feel on any given day, you’re not alone.  Not at all.  Reach out and find someone to talk to, someone to hear your gripes, someone who will support you because they’ve been there.  Look into your local community for heart families to connect with.  Use social media: there’s tons of groups out there too.  You’ll quickly find there are people out there just like you, no matter how messed up you may feel.

And when you’re on top of your game and feel like you’re rolling along, then you should reach out and help someone else.  There is an estimated 2-3 MILLION people living with a CHD…and their parents add to that number.  Think about what difference we could make if all of us reached out to help one fellow CHD parent.  Think about it.  Use what you’ve lived to help someone see the sunshine…and when you’re in that dark place – and you will be – someone will be there to help you.  A fellow guest blogger here with PCHA put it perfectly: this is a marathon, not a sprint.  I will say that during this marathon ALL of us will stumble, and when that happens will you be the one to stop and lend a hand?  Will you find yourself without a hand to hold?  I hope not.

For some of you this is very challenging: it requires you to reach out of your comfort zone and maybe rip open some old wounds.  When you do that, though, you will help others heal.  For some of you, the help starts with you.  You know how the saying goes, you should love your neighbor as you love yourself…but I’m willing to bet there’s some of you out there that I don’t exactly want loving me based upon how you love yourself.  Ouch, I know.  But it’s true and you know it.  You’re doing a great job, Heart Mom and Dad.  Keep it up and keep running…keep your hands outstretched to help others.

Let’s be that mighty Redwood forest together…because it’s more than one tree, it’s all of them working as a team to support one another and survive.  Do you want to see more CHD research?  Advocate for it together.  Do you want to give the best care to your heart warrior? Work together.  Do you wish to one day see the end of CHDs?  Fight for it together.

There’s an African proverb that sums it up best: “If you wish to go fast, go alone.  If you wish to go far, go together.”

Be the forest.

Redwoods

BlogHeadshotChris Perez (aka HLHS Dad) lives just outside Charlotte, NC with his wife and 3 sons – including Nolan, who was born with HLHS in 2012.  He is the author of Half Heart. Whole Life: an HLHS Dad’s Blog, where he shares his journey as a heart dad with honesty, humor, and the realization that dad’s just handle things differently. In his spare time – if such a thing exists – Chris enjoys New York Yankees baseball, playing guitar, and memes.  You can visit Chris’ blog at http://hlhsdad.com.

 

“I am Conquering CHD.” You can, too!!

1000 advocates

1000 advocates in 30 days.

We can do this!

Help us “Conquer CHD”

Click here to become a member of PCHA’s advocate network, today!

Why?

We need you.  Advocacy works.  It has increased federal research funding. It has helped expand CHD data collection to include people of all ages. It has raised the transparency discussion to a national policy level.  It has increased awareness of CHD in Washington D.C.  Advocacy works.

In order to have a bigger impact, we need everyone to come together with one voice!

Your experience with CHD is a powerful tool.  The key to success in bringing about change on a local or national level is to provide a personal connection to an issue. For this reason, through our grassroots efforts, PCHA is bringing the community together to share their stories and strengthen the voice of CHD.

Our advocates are the most effective resource for making changes on Capitol Hill, with government agencies, other national policy makers and even with-in their own hospitals.

Being a part of the Advocacy Network is easy.  Being part of something bigger makes a difference!

It’s Free!  You are under no obligation to do anything.

As an advocate you will benefit from:

  • regular communication to help you stay up to date on what is happening in the CHD policy world
  • access to resources to help empower you to share your story
  • alerts to when urgent action is needed
  • personalized opportunities depending on local and regional needs

By signing-up, you are joining a community of patients, parents, families, friends, nurses and doctors all committed to conquering CHD. Be a part of something bigger. And tell the world “I am Conquering CHD!”

Please sign-up today and use and share these badges to help us reach others.  Let the world know that you are doing your part – you are Conquering CHD!

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i am you can

 

 

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i am you can

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Supporting Development in Children with CHD

The Pediatric Congenital Heart Association recognizes that with increasing knowledge of issues relating to long term outcomes for children with congenital heart disease, as a parent, it can be difficult to understand what it might mean for your child.

Photo Courtesy of T. Rainey

Photo Courtesy of T. Rainey

In 2014, the American Heart Association published an article by leading neurodevelopmental and pscyho-social experts, including PCHA Medical Advisory Board Member, Erica Sood, PhD. This article provides helpful information about what to expect and potential concerns for children with CHD through the transition into adulthood.  This is not a substitue for medical advice, rather a resource to begin a conversation with your doctor.

The complete article can be found in the educational resources section of our website.

Here is an image of the included diagram:

Supporting-Development-in-Children-with-CHD.pdf

Brosig, et. al Circulation. 2014; 130: e175-e176

Media Advocacy

“Advocacy groups have carved a niche for themselves in the broadcast industry’s policy-making apparatus by first defining key public interest issues and then by advocating ways by which broadcasters may address these issues.” – Museum of Broadcast Communications 

PCHA has seen the tremendous benefits of social media advocacy. In the first half of May two of our key volunteers and dedicated advocates shared their story with a local television station and created a buzz locally and nationally, reaching tens of thousands of people with the simple message that we must do more to conquer CHD.

You, too can share your story with the media, from the comfort of your own home!


Interview

Preparing your story

The first step in any type of advocacy is to prepare your story.  This is especially important in media advocacy because you are often recorded.  But you can do it!!  Check out our Telling Your Story resource to help you develop your story.  We are more than happy to review your story or help you practice.

The next step is to identify a few key talking points.  If you haven’t already, sign-up to receive our advocacy emails that can serve as guide to what we are currently working on in Congress.  You can also contact our office for an updated list of points tailored specifically to you.

Make sure you have an ASK!!  What is it you want the listener to do?  For example: Visit a website to learn more, attend an event, become an advocate, or donate.

Lastly, it is helpful to provide any internet links and statistics in written format to make sure they are correctly delivered through the media.  The PCHA Fact Page is regularly used for this purpose.

Connecting with your local media:


Television and Radio
Most television and radio stations have an email address to submit interesting stories.  You can submit your written story through this mechanism.  It is best to confirm that it was received with a follow-up phone call.  When you call, it can be helpful to ask to be directed to the health or human interest correspondent, as this person would be most likely to pick-up your story. Tying your submission with an upcoming event, activity or project will help, too.

Newspaper
A letter to the Editor or Op-Ed piece are great ways to initiate contact with your local newspaper and can lead to a lengthier story.  A letter to the editor can be created directly addressed to a lawmaker and have a call to action.  An opinion or editorial piece is shares information about CHD and can highlight any work a lawmaker has already done.  It helps to write this in conjunction with a medical professional who can provide technical expertise.

Social Media
You can also connect with media personalities or stations through Facebook and Twitter.  You can share your story on their page, or tweet a link to a resource like our fact sheet.

Tell us about it:
Be sure to let us know you participated in Media Advocacy.  We can follow-up with the media folks if needed.  We can also promote any features that result through social media and share with your lawmakers!

PCHA and YOU! – Town Hall Meeting

Connect, Learn and Lead:

PCHA TOWN HALL MEETING
May 28, 2015
1pm ET

Click here to register

Town hall meeting

Join Executive Director, David Kasnic, and Director of Programs, Amy Basken, for our first, ever, PCHA Town Hall Meeting.  During this interactive webinar, you will be provided with a brief update on PCHA programs, and then have the opportunity to interact with PCHA Leadership through a question and answer session.

When you register, you will have the opportunity to submit a question for the Q&A session.  You may also email any questions to advocacy@conqueringchd.org – please include “Town Hall” in the subject line.

After registering, you will receive a confirmation email containing information about joining the webinar.

Join us, as we work together to “Conquer CHD!”

Click here to register

Pulse-ox Screening: New Key findings

The Pediatric Congenital Heart Association supports early detection of critical congenital heart disease, including CCHD screening through the use of pulse-oximetry.

The journal Pediatrics has published a new study estimating the number of infants with critical congenital heart defects (critical CHDs) potentially detected or missed through universal screening for critical CHDs using pulse oximetry. CDC researchers estimated that about 1,755 infants with critical CHDs would be diagnosed late (meaning on or after the third day after birth). Of these, about half (875 infants) with a critical CHD would be detected through newborn screening using pulse oximetry, but an equal number (880 infants) might still be missed each year in the United States.

These findings indicate that current CCHD screening efforts work, but are far from perfect and there is much work that remains to be done.  Many kids will still be missed.  We cannot rest comfortably with the passage of regulation, we must continue to push for improved screening efforts.  Parents and pediatricians cannot assume a child does not have a CCHD just because the screening was “normal.”

A summary of key findings can be found here or read the paper’s abstract here.

Pulse Ox - Image by Massimo

Image by Massimo – all rights reserved

Ultra-Marathon Runners: The Value of Continuing Support for CHD Families

The Pediatric Congenital Heart Association recognizes the need for open, honest communication to empower patients and parents of children with CHD.  As Margaret describes, support can come from many people: doctors, nurses, or those who have walked this journey ahead of us.  The need for support does not end when you leave the hospital. Contact your hospital for information about local peer support or visit mendedlittlehearts.org for a list of congenital heart support groups across the country.

old footwear

Early on in our journey with CHD, when we were still in the hospital with our newborn baby, I was starting to get impatient, worn down, and, like any new mom, longing for the day we could finally take our son home and introduce him to life beyond hospital walls. I hadn’t yet met any other heart parents in person, and I was feeling overwhelmed from the 29th or 30th night of sleeping in a hospital pull-out chair, pumping milk, and spending the day next to our son’s hospital crib feeling pretty helpless about my entire role as a new heart mom at the hospital bedside of a brand new baby. I was starting to express my frustration to any doctor or nurse who entered the room.

“This is a marathon, not a sprint,” one of the nurses told me gently but firmly. “You have to remember that with these hospital stays.” And I did remember those words for subsequent surgeries. Hospital stays really do feel like marathons. But the challenges of CHD don’t end with surgeries or hospital discharges, and neither does the need for a supportive CHD community.

Hiking

Photo by Mako10

Last weekend, I attended a daylong training program on how to provide peer-to-peer support to other heart families. Almost seven years into this journey, despite providing informal support to many fellow heart parents over the years, I feel a pressing need to actively, continually learn how I can be the best member of a supportive heart parent community I possibly can.

These thoughts had long been weighing on my mind:

How can I support parents just starting out on this journey? How can we provide better continuing support to heart families post-surgery? How can we provide a continual, supportive network to heart families across the entire lifespan of CHD?

I can still remember one of the very first local heart moms I met whose son’s CHD is almost identical to my child’s. The relief I felt when I found out her child was a few years older than mine and they were enjoying their lives and loving their family. The weight that was lifted off my shoulders when I learned the first several months had been a big challenge for them, too, and that I wasn’t alone in my feelings, and that I wasn’t “failing” by thinking this was hard. All these years later, she is still the person I would consider my “go-to heart mom” for all things related to this journey.

My son will be 7 this summer, and though that shouldn’t sound old, it’s been almost 3 years since we were inpatient and going through the Fontan surgery, the last of the 3-stage surgeries for HLHS and several other single ventricle heart defects. These days, when friends in the CHD community are facing the Fontan and they ask me things such as, “how many calories per day will my child be able to have on the low-calorie diet?” or “What’s the latest protocol for warfarin, post-Fontan?” I start to reflect on how I am no longer always up-to-date on the changing protocols and guidelines, which can vary across institutions and individual patients, let alone over time. How much more do I feel that way when new parents are facing the earlier Norwood and Glenn surgeries, and ask me if they’ll be able to breastfeed their baby, or how many visitors are allowed in the NICU at a time, or how many cubic centimeters of formula their baby should reasonably be taking per day.

I don’t feel like an “older” heart mom (despite my–ahem–growing age)–after all, to me, those are the women who have walked much further on this road than I have, the ones I myself look to for invaluable support, advice, and information. The ones who have truly pioneered a world where we still have no definitive outcomes, who have gone before and mapped at least a few roadmarkers in relatively uncharted terrain. I feel like a middle child in our larger CHD community. I find wisdom from parents further along on this journey absolute gold, yet at times feeling increasingly out of touch with the finer details of the very earliest years. Maybe my role from now on is only advocacy, and I should leave the support part behind, I started to think. But as much as I love the variety of ways to participate in CHD awareness, the thought of being no longer relevant as a support parent and stepping away from the social aspects of being a heart parent made me feel sad.

It turns out, however, that it’s not about knowing all the answers to all the latest questions, or being a walking database of information. Medical questions are often best referred to doctors and nurses anyway, and information can always be found out with a little help and digging. What parents most often want is to talk to someone who has been through a similar experience and is often on the other side of what they are currently going through.

Doctors, nurses, and other professionals are wonderful sources of information, and parental support is certainly not meant to replace that. Parental support is meant to provide a calm and listening ear that isn’t constrained by busy hospital schedules or interrupted by pagers or alarms. It provides hope, encouragement, and empathy. It doesn’t have to–and often shouldn’t–involve fixing problems, having all the answers, giving advice, or telling a parent how to feel or act. It provides reassurance in what for many parents will be the scariest hours of their lives. However, other parents have been through what most of the doctors, nurses, and other professionals haven’t–hearing your child has a heart defect, handing your child over for heart surgery, and dealing with new normal that is life with CHD: the what-ifs and unknowns, the fears, the everyday challenges and victories, and the uncertainties of life with a “heart kid.” At the end of the day, the doctors, nurses, and hospital staff are there to treat the patients–our children, not us–and rightly so. That is what they are there for, and no parent would expect or want anything less than our children’s health to be their number one priority. Parental support allows someone to take a few minutes or an hour to pay attention to the parent first and foremost, and give him or her an outlet for their feelings.

The value of peer and family support, however, has an additional reach. Recent research conducted by Mended Hearts found that adult cardiac patients who had received inpatient visits from Mended Hearts volunteers felt more optimistic and had lower rates of hospital readmission for chronic conditions such as heart failure. When asked how Mended Heart volunteer visits were helpful, the most cited area was “support from someone with a similar experience,” even more than receiving information about their condition or the volunteer organization itself. These findings were especially significant in patients who were dealing with a chronic cardiac condition that required lifestyle changes–a description that applies to many heart families managing their child’s heart condition.

But the benefits don’t have to stop once families leave the hospital. An article published in the February 2015 issue of Cancer (a journal of peer-reviewed scholarly articles) described the findings of a study of breast cancer survivors who were experiencing post-treatment stress. The study found that the women who attended the support group did not experience the negative “biomarker of psychosocial stress” (in this case, a shortening of telomeres in their chromosomes, which speeds the aging process of the human body) that the control group that received no support group time did. The women who attended the support group had very similar results as a second study group of distressed survivors who attended yoga and meditation classes!

Finally, then, there is the need to provide continuing support and the sense of a sustaining community to heart families beyond those early years. As our children grow older, they (and we as parents) often deal with a new set of issues that can leave us, and our children, feeling isolated if we don’t have a supportive community around us.

Some of these issues might include:

–screening for developmental delays and obtaining access to services such as speech and physical therapy

–feeding problems, oral aversion, weight gain, and diet challenges

–setting up IEPs and 504 plans as our children enter school

–staying on top of the latest research developments in the CHD world, and what those mean for our child’s medical care and long-term options

–secondary complications or other health problems facing the patient or other family members

–seeking therapy or coping strategies for PSTD, anxiety, and other psychological complications members of heart families are at risk for

–support for siblings, who often feel left out, anxiety regarding their brother or sister’s future, or who deal with grieving

–potentially dealing with heart (physical) and health limitations

–your child’s growing awareness of his or her heart defect and mortality, the need and responsibility of self-care, peer pressure, bullying, how your child can talk to friends and potential boyfriends/girlfriends about their heart defect

–survivor’s guilt (sometimes seen in older heart children who have lost friends)

–dealing with the possibility of rebellion and risky behavior in young adult and early adult years

–transition to adult CHD care and your child managing their own health

–body image, birth control, pregnancy and parenthood, and much more.

–livelihood and financial management as an adult CHD survivor.

Heart parents want comfort and reassurance–but they also want honest answers, and to be equipped for the unexpected. It isn’t ethical to make false promises to new heart families that “everything will be just fine” or “you have three surgeries, go home, and that’s it.” Indeed, I would argue such statements do a disservice to members of the CHD community who are facing uncertain times, and ultimately, can contribute to a culture of denial that many are trying to move away from. We can’t pretend that it’s easy for any parent to hand their child over for open-heart surgery. We can’t pretend that hospital stays aren’t challenging feats of physical and mental stamina. We can’t pretend things will always be free of complications and unforeseen outcomes. Support is, “It won’t always be easy. But no matter what, we are here for you. You are not alone.”

“This journey is a marathon, not a sprint.” Even now, all these years later, I remind myself of those words during the times I need patience, answers, or fixes. I would argue that the scope and span of the entire CHD journey feels more like an ultramarathon–and we runners are here to cheer each other on for the long haul.

Margaret King bio

Margaret 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.

Charting our future together: NHLBI’s Strategic Visioning Process

An announcement from the National Heart, Lung, and Blood Institute (NHLBI).  Join the Pediatric Congenital Heart Association in advocating for CHD research by sharing what you believe are the challenges facing children and adults with congenital heart disease. We encourage you to take a moment and participate:

The National Heart, Lung, and Blood Institute (NHLBI) launched its Strategic Visioning Initiative earlier this spring. The success of this Initiative depends upon your participation.

Please participate by submitting Questions and Challenges between now and May 15, 2015, at http://nhlbistrategicvisioning.ideascale.com/.

Your input will help us identify the most promising opportunities in heart, lung, blood, and sleep research, as well as the challenges that pose significant barriers to the progress of this research. There is one month to go to submit ideas to help NHLBI identify its priorities for the next decade.

If you have further questions, please contact us at NHLBI_Vision@mail.nih.govWe look forward to partnering with you as we collaboratively chart the exciting future of heart, lung, blood, and sleep research.

Legislative Champions – April Update

The Pediatric Congenital Heart Association, along with all of our amazing advocates, has been working hard to build legislative champions in Congress – lawmakers who have expressed an interest in CHD and have taken initiative by publicly supporting our issues.

Legislative Champions

Be sure to check out our updated List of Congenital Heart Legislative Champions!

This list includes everyone who signed the Dear Colleague Letters and joined the Caucus.  If your member of Congress is not on this list, do not worry.  Sometimes it takes several requests for them to take make the commitment to publicly support congenital heart disease.

Contact Your Lawmakers

If they are on the list, say Thank You!

If they are not on the list, ask them to join the Congressional Congenital Heart Caucus by contacting Tom Power in Congressman Bilirakis’s office at thomas.power@mail.house.gov

The following resources can be found in the advocacy section of our website

To learn more about our advocacy program, or to become an advocate, join our 1Voice/40,000 Strong Campaign by completing the form on our website!

Action Alert