We’re Partnering With The Mighty!

We’re thrilled to announce a new partnership that will bring our resources in front of The Mighty‘s wide-reaching readership. We will now have a growing home page on The Mighty and appear on many stories on the site.

Your story matters.

The Mighty is a story-based health community focused on improving the lives of people facing disease, disorder, mental illness and disability. More than half of Americans are facing serious health conditions or medical issues. They want more than information. They want to be inspired. The Mighty publishes real stories about real people facing real challenges.

We’re dedicated to helping people with congenital heart defect in their lives. With this partnership, we’ll be able to help even more people.

Here’s an example of the great stories you will find on The Mighty: https://themighty.com/2016/07/congenital-heart-defect-man-makes-promise-to-be-an-advocate/

We encourage you to submit a story to The Mighty and make your voice heard!

 

Congenital Heart Legislative Conference 2017

lc-2017-logo

Registration is now open! 

Register

The Pediatric Congenital Heart Association,
Children’s Heart Foundation,
and Adult Congenital Heart Association
invite you to attend

Congenital Heart Legislative Conference 2017

March 1-2, 2017
Liaison Capitol Hill Hotel, Washington D.C.

Your voice matters as we unite to educate our members of Congress about congenital heart disease.

  • Learn about current CHD activities in Washington D.C.
  • Learn how to effectively tell your story.
  • Connect with other CHD patients and professionals.
  • Share your story with your members of Congress.
  • Inform your legislators about the key policy issues including the need for research and data collection.
  • Make a difference on behalf of those living with CHD!

Register

Important Deadlines:

  • January 3 – NEW: Registration Closes, to ensure adequate scheduling of meetings
  • January 27 – Last date to receive discount hotel rates

 

Conference Agenda Overview: 

Wednesday, March 1st
Congenital Heart Legislative Conference
9:00am – 10:30am Registration
10:30am – 11:30am – Advocate Training
11:30am – 1:00pm – Lunch, Meet and Greet
1:00pm – 5:00pm – Advocate Training
6:00pm – 9:00pm – Reception
Thursday, March 2nd
Congressional Visits
6:45am – Buffet Breakfast
7:30am – 8:30am –  Advocate Training
9:00am – 4:30pm – Hill Visits
5:00pm – 7:00pm – Closing Reception

Travel and Lodging: 

Note, all attendees will be responsible for travel and lodging.*

We encourage you to register and book your hotel and travel reservations early.

For those who wish to stay on-site at the Liaison Capitol Hill:

  • Call toll free (877) 499-5277.
  • Or you can register online.
  • Please be sure to reference the Congenital Heart Conference group when making reservations

Deadline to secure your rate of $209/night is Friday, January 26, 2017; no exceptions.
Scholarship Information: 

There are a limited number of scholarships to attend the Congenital Heart Legislative Conference 2017.  The scholarship application may be found here.  The deadline to apply for a scholarship is November 4, 2016.  All applicants will be notified by November 18, 2016.

Your application does not guarantee that you will receive a scholarship.  It is our policy to provide equal opportunities without regard to race, color, religion, gender, sexual preference, age or disability.

Registration closes much earlier this year –  be sure to register, today!

Register

Happy Birthday PCHA – #ConqueringCHD Week!

There are so many ways to help us recognize our 3rd Birthday!


1) Use your Social Media talents as we work to reach 250,000 people!

It’s your week to shine as a PCHA #ConqueringCHD social media ambassador!

In February, our education efforts had a total weekly reach of 210,000 people for our #CHDAware campaign.  Wow- that is a huge impact!  Let’s do it, again!!!

Join the Social Media Blitz 

During the week of August 21-27 help us cover social media with facts and faces. Like, share, comment and tag using the hashtag #ConqueringCHD.

In the know – Help others understand the impact of CHD and what the Pediatric Congenital Heart Association is doing about it by sharing our memes throughout the week.

Make it personal – Using the hashtag #ConqueringCHD, share stories and photos about those in your lives who are Conquering CHD. Tag us on Facebook, Twitter or Instagram. Whether it is conquering CHD at the doctors office, at school, on the playing field, welcoming a rainbow baby, helping others, advocating, or celebrating a birthday of your own, during #ConqueringCHD week, August 21-27, we want to celebrate with you!!

Invite others – we can do the work for you – simply guide them to our media pages.  Ask them to like or follow us.  We’ll make sure they STAY engaged!  Click on an icon to find us:

Facebook twitter-button linkedin iglogocolor

2) Help us raise $10,000

It couldn’t be easier –  simply click here or text CHD2016 to 71777 to donate or become a fundraiser yourself.

Give a gift that really makes a difference:

Help us reach our goal of $10,000 to support vital programs including helping patients talk to their doctors, making sure kids get great care their whole life, and fighting for more federal research funding.

  • $25 allows us to reach 1000 people through social media
  • $50 helps 10 newly diagnosed families through our Guided Questions program
  • $500 sponsors one key hospital site visit

Join in on the fun and earn great party favors:

Become a fundraiser yourself – simply ask 10 friends to give $10! All the tools you need are right there on your phone!  As a fundraiser, you will receive regular emails to provide inspiration and support in your efforts.  When you reach your goals, we will send you party favors:

  • Raise $100 and receive a free PCHA “Conquering CHD” t-shirt
  • Raise $500 and receive a t-shirt and PCHA Canvas tote bag
  • Raise $1000 and receive a t-shirt, tote bag, and exclusive PCHA baseball cap!

Need inspiration?  Check out these ideas:

  1. Simple Facebook Post: our experienced fundraisers said that with a simple post on Facebook and one email to their families and friends, it doesn’t take long to reach $100!
  2. Night Out for CHD: Mary Adair from San Antonio, Texas has arranged for several charitable nights out at local restaurants where proceeds earned during a specific time period benefit PCHA.
  3. Lemonade Stand: Nicholas Basken from Wisconsin is planning a lemonade stand on the corner, he will also invite friends and family to participate through the Virtual Party fundraising platform (above).
  4. Check out our Fundraising Toolkit for more fun and easy ideas!! Any funds raised off-line can be added to your online fundraising total.  Want to learn more, email advocacy@conqueringchd.org

3) Write your Members of Congress

AA - Futures ActTell them it is #ConqueringCHD Week.  Ask them to join you in #ConqueringCHD by becoming cosponsor of the Congenital Heart Futures Reauthorization Act (CHFRA).  Click here to learn more and see if your lawmaker has already signed-on.  If they have, be sure to thank them for #ConqueringCHD!!


4) Get the Swag:

Tori - Bat KidCheck out our online store for #ConqueringCHD apparel and buttons.  Don’t miss our great strawberry smelling pens, too!!


Click to sign-up and saveAnd don’t forget to Put Safety First and sign-up for the Rapid SOS.  You can learn more and sign-up, here.


Social Media Log 2016The party goes on after #ConqueringCHD Week.  Consider joining us for our Second Annual Congenital Heart Gala on September 24th, 2016 at the Milwaukee Art Museum, Milwaukee Wisconsin.


Finally, Celebrate all you are doing as, together, we are #ConqueringCHD!

Knoweldge. A Voice. Hope

Press Alert: Announcing New Partnership with Rapid SOS

·

RapidSOS Logo Transparent     PCHA-2C-V

 

RapidSOS and the Pediatric Congenital Heart Association partner to provide enhanced access to emergency services

  • 240 million[1] 9-1-1 calls are made every year in the U.S.; over 70%[2] are from mobile phones, which fail to provide exact location to emergency dispatchers
  • 40,000 infants are born in the U.S. each year with Congenital Heart Disease (CHD), nearly 1 in 100 newborns; those affected with CHD have 3-4 times higher rates of ER visits than the general population[3]
  • Haven represents a transformation in access to emergency services – from a phone call solely dependent on voice to a robust data connection for voice, text, medical/demographic data

 

FOR IMMEDIATE RELEASE – Madison, WI. (July 11, 2016).

The Pediatric Congenital Heart Association (PCHA) today announced a partnership with RapidSOS, an advanced emergency technology start-up revolutionizing personal safety and family connectivity. The partnership will offer access to the RapidSOS Haven app at a reduced price, providing individuals with enhanced access to emergency services. Haven sends important data to 9-1-1 to aid in fast emergency response and better situational awareness for first responders.

 

Working together, RapidSOS and PCHA will support those with CHD and their families, by connecting them to their loved ones and providing peace of mind that emergency help is one touch away when they need it. With one tap on Haven, the app connects the user with the nearest dispatch center anywhere in the contiguous U.S., while providing a voice connection and a data pipeline to 9-1-1, to transmit:

 

  • GPS location
  • Type of emergency
  • Relevant medical and demographic data
  • Text messages: Haven speaks the text message if the dispatch center does not have the capability to receive texts. Currently works one-way (user to 9-1-1); two-way coming in future

 

When setting up the app, users conveniently enter all medical conditions, allergies, and medications, so that if an emergency occurs, life-saving information is communicated directly to 9-1-1. Additionally, after an alert has been triggered, Haven notifies emergency contacts, so that family and friends are informed.

“This partnership with PCHA supports an important community who live with far greater medical needs than most,” said RapidSOS co-founder and CEO Michael Martin. “Those with CHD and their families deserve a robust and reliable connection to emergency services, and Haven provides that.”

 

The Haven app also includes access to RapidSOS’ Family Connect feature. For the first time, people can call 9-1-1 on behalf of a loved one, transmitting their loved one’s location and relevant data directly to the dispatch center closest to them. Additionally, Family Connect allows users to share their location with loved ones, see family members’ real-time locations without the distraction of a phone call or text, and easily ask family and friends for help. A user can choose who can see their location and when it is shared, ensuring privacy and control.

 

“The Haven app offers a helpful hand to families living with CHD,” said David M. Kasnic, Executive Director of PCHA. “Being able to transmit important medical information with one touch can help those with CHD get appropriate care that is more tailored to their distinct needs.”

 

RapidSOS is offering Haven at a 20% discount to those associated with PCHA when they sign up here. The Haven app is available for iPhone and Android devices and works anywhere across the contiguous U.S. and Hawaii, with one touch emergency calling in over 250 countries and jurisdictional territories. For more information about RapidSOS and the Haven app, visit www.rapidsos.com.

 

About RapidSOS

RapidSOS was formed in 2012 by a team of M.I.T., Harvard, and Stanford grad students who had personal experiences with the challenges of the existing emergency communication infrastructure. Working closely with the 9-1-1 community, tech and telecom companies, and leading investors, RapidSOS is developing technology to predict and preempt emergencies before they occur, dynamically warn people in harm’s way, and ensure that first responders are one touch away globally. Learn more at www.RapidSOS.com

Contact:

Regina Jaslow

rjaslow@rapidsos.com

(347) 879-0024

 

About Pediatric Congenital Heart Association

The mission of Pediatric Congenital Heart Association (PCHA) is to “Conquer Congenital Heart Disease (CHD)”.  PCHA was founded on the key purpose to be the resounding voice of the pediatric patient population and are accomplishing this through collaboration with patients, parents, providers, and partner organizations. PCHA is improving quality and outcomes through CHD education, research and awareness, all while reducing the impact of congenital heart disease while striving to realize a world free from it.

 

Contact:

Amy Basken

abasken@conqueringchd.org

608-370-3739

 

###

 

 

[1] National Emergency Number Association. http://www.nena.org/?page=911Statistics

[2] National 911 Program. Review of Nationwide 911 Data Collection. http://www.911.gov/pdf/current911datacollection-072613.pdf

[3] Pediatric Congenital Heart Association. http://conqueringchd.org/

Make your call for help do more! Subscribe to Rapid SOS – Haven

PCHA is excited to partner with Rapid SOS and their Haven mobile app, to help keep you and your loved ones safe.

Haven App

With the press of a button you can contact emergency services, share key information about location and medical history, and alert your emergency contacts. Perfect for families of children or adults with congenital heart disease.

Medical Information

As part of our partnership, we are able to extend a special offer for 20% off they already low subscription rates, including plans for less than $20/year.

Click to sign-up and save

But don’t take our word for it:

“This app was easy to download and enter important information about Nicholas’ heart defect. We travel a lot and I feel better knowing that wherever we are, the first-response team would have the information they need about his health before they even arrive!” – Amy


More about RapidSOS:

Q: What is RapidSOS?

A: RapidSOS is an emergency technology company founded by graduates of M.I.T., Harvard, and Stanford, all of whom had personal experiences with the challenges of our country’s aging 9-1-1 infrastructure. RapidSOS’ technology platform provides improved access to 9-1-1 and emergency services, as well as other features that improve mobile security and family connectivity.

 

Q: What is Haven?

A: Haven is a smartphone app developed by RapidSOS that allows users to call 9-1-1 more effectively. Calls from the Haven app are routed directly into the correct 9-1-1 Public Safety Answering Point (PSAP). This is a significant improvement over the current situation, in which wireless calls are routed based on cell tower or routed to a dedicated wireless 9-1-1 center affiliated with the Highway Patrol or State Police and then transferred. Instead of just delivering basic cell tower information like a wireless 9-1-1 call, Haven sends more precise and comprehensive information to 9-1-1.

 

With one touch, Haven places a 9-1-1 call and transmits vital information to the dispatcher, including type of emergency, precise user location based on a variety of sensors on the smartphone, relevant medical and demographic information. The app makes it possible to send text messages to 9-1-1 and communicate when it’s difficult or dangerous to speak. Through better data, Haven improves the situational awareness of call takers and dispatchers, so that they can make more informed dispatching decisions to send appropriate responders, providing more comprehensive information about the incident.

 

After a 9-1-1 alert is triggered, the app notifies emergency contacts so that they are informed of the emergency. Haven also includes access to RapidSOS’ Family Connect feature. In addition to the emergency capabilities, Family Connect allows users to share their location with loved ones, see family members’ real-time locations, and easily call 9-1-1 on their behalf.

 

Q: What problem is RapidSOS/Haven solving?

A: Over 180 million[1] 9-1-1 calls come from mobile devices annually, all of them providing limited or no location information, and relying solely on the caller’s ability to speak and ability to articulate their location. The 9-1-1 system was originally built for landline phones and isn’t currently equipped to leverage the full capabilities of modern smartphones. RapidSOS makes it possible to send mobile data (location, type of emergency, demographic/medical information) directly to PSAPs to assist first responders in life-saving efforts.

 

Q: Even small children know to call 9-1-1. Will people adapt from such a well-known process?

A: Millennials and the generation that follows them are now growing up with reliance on smartphone technology, and have embraced apps for everything from ordering dinner to getting from one place to another. Haven will complement this lifestyle, and its simple user interface means everyone can use it intuitively.

 

Q: Is this a replacement for the existing 9-1-1 system?

A: No, RapidSOS does not replace 9-1-1 or compete with 9-1-1. In fact, RapidSOS is working closely with 9-1-1 Public Safety Answering Points (PSAPs) across the nation to make sure that their technology is effectively integrated into the current infrastructure. RapidSOS enables the dispatch centers to receive more information about callers quickly, which can only improve emergency response and care.

 

Q: Will making this transition require an investment of government money for PSAPs?

A: RapidSOS’ technology integrates seamlessly with the existing 9-1-1 system. This means no new training, equipment, or cost is required.

 

 

Q: What makes Haven different from other emergency apps out there?

A: RapidSOS spent three years developing an emergency telecommunications platform that allows smartphone devices to route calls to the correct 9-1-1 center and transmit life-saving mobile data. No other app is directly integrated into the 9-1-1 system. Some apps use a third party call center operated by a private company that could slow down response or introduce human error. Other apps require the 9-1-1 center to license and install a proprietary software solution at a prohibitive cost to government agencies. In general, these apps do not have broad adoption or support from the 9-1-1 community because they are either ineffective, or very expensive without providing pertinent real-time data in an emergency.

 

Q: Does RapidSOS share/sell personal data that users entered into the app or user portal?

A: The information input in the user portal or the app is only shared with 9-1-1 dispatchers and only when a user has initiated a 9-1-1 call.

 

Q: Will Haven work if there is no cell coverage?

A: Haven works over cellular data or WiFi data, as opposed to a traditional wireless 9-1-1 call that only works over a cellular connection. RapidSOS intelligently manages the connection and always uses the most robust communication channel possible. If there is no WiFi or data, the app initiates a native 9-1-1 dial through the wireless carrier, so that the caller can always reach 9-1-1 under any circumstances.

 

Q: The app allows users to text 9-1-1. How does this work?

A: Currently only 6%[2] of PSAPs in the nation have deployed technology that allows anyone to send a text message to 9-1-1. Haven enables all users to send information to 9-1-1 via text message, regardless of the PSAP’s ability to receive texts. Haven will speak the text to the dispatcher (text-to-speech) and the dispatcher can respond or ask follow-up questions verbally.

 

Q: What’s the cost for the app? And how will lower income families afford it?

A: RapidSOS is committed to making the app available to anyone who needs it through the Safer Together Movement (with no questions asked, any user can have the service for free). For those who can afford it, Haven is available from the App Store or Google Play store with a 30-90 day free period. After the free period, individual plans are $2.99/month or $29.99/year while family plans are $4.99/month or $49.99/year. Family plans enable a user to add family members at no additional charge.

 

Q: What happens after the free period is over or if users do not pay for the subscription?

A: RapidSOS will contact the users and ask if they want to continue using the app with a paid subscription. Those who cannot afford the plan at the time can sign up to receive the plan for free as part of the Safer Together Movement. If a user does not have a valid subscription (during free period or paid subscription), the app will direct the user to their native dialer to call 9-1-1.

 

Q: If I have trouble using the app, or have suggestions or questions, how do I get help?

A: RapidSOS has several instructional videos on their YouTube channel that show you how to use the app. You can submit any feedback or suggestions within the Haven app by selecting “Support and FAQ” from the menu, then tapping “Feedback.” Additionally, you can log in to your account at RapidSOS.com to submit your suggestions, feedback, or questions within the Support Center. You can also search the knowledge base of frequently asked questions in the Support Center.

 

[1] National 911 Program. Review of Nationwide 911 Data Collection. http://www.911.gov/pdf/current911datacollection-072613.pdf

[2] http://www.911.gov/pdf/Stateof911webinar_December2015.pdf

Update: Save vital CHD research funding!

Advocacy Works:

Senator Durbin’s Amendment to support research not red tape passed yesterday afternoon with a bi-partisan win of 66-32. A huge thank you to all of you who have called, tweeted and shared your stories.  National advocacy efforts were mentioned multiple times during the debates, including a letter that PCHA joined with 142 other advocacy organizations.  During the debate process, excellent points were raised about research funding.  We are looking forward to understanding more about how national research for the most common birth defect will continue to be supported!

Please consider thanking your member of Congress who supported the amendment.  Here is how the played out:

YEAs —66 NAYs —32 Not Voting – 2
Alexander (R-TN) Barrasso (R-WY) Sanders (I-VT)
Ayotte (R-NH) Coats (R-IN) Warner (D-VA)
Baldwin (D-WI) Corker (R-TN)
Bennet (D-CO) Cornyn (R-TX)
Blumenthal (D-CT) Cotton (R-AR)
Blunt (R-MO) Crapo (R-ID)
Booker (D-NJ) Cruz (R-TX)
Boozman (R-AR) Daines (R-MT)
Boxer (D-CA) Enzi (R-WY)
Brown (D-OH) Ernst (R-IA)
Burr (R-NC) Fischer (R-NE)
Cantwell (D-WA) Flake (R-AZ)
Capito (R-WV) Graham (R-SC)
Cardin (D-MD) Hatch (R-UT)
Carper (D-DE) Inhofe (R-OK)
Casey (D-PA) Lankford (R-OK)
Cassidy (R-LA) Lee (R-UT)
Cochran (R-MS) McCain (R-AZ)
Collins (R-ME) McConnell (R-KY)
Coons (D-DE) Paul (R-KY)
Donnelly (D-IN) Perdue (R-GA)
Durbin (D-IL) Risch (R-ID)
Feinstein (D-CA) Roberts (R-KS)
Franken (D-MN) Rounds (R-SD)
Gardner (R-CO) Rubio (R-FL)
Gillibrand (D-NY) Sasse (R-NE)
Grassley (R-IA) Scott (R-SC)
Heinrich (D-NM) Sessions (R-AL)
Heitkamp (D-ND) Sullivan (R-AK)
Heller (R-NV) Tillis (R-NC)
Hirono (D-HI) Toomey (R-PA)
Hoeven (R-ND) Vitter (R-LA)
Isakson (R-GA)
Johnson (R-WI)
Kaine (D-VA)
King (I-ME)
Kirk (R-IL)
Klobuchar (D-MN)
Leahy (D-VT)
Manchin (D-WV)
Markey (D-MA)
McCaskill (D-MO)
Menendez (D-NJ)
Merkley (D-OR)
Mikulski (D-MD)
Moran (R-KS)
Murkowski (R-AK)
Murphy (D-CT)
Murray (D-WA)
Nelson (D-FL)
Peters (D-MI)
Portman (R-OH)
Reed (D-RI)
Reid (D-NV)
Schatz (D-HI)
Schumer (D-NY)
Shaheen (D-NH)
Shelby (R-AL)
Stabenow (D-MI)
Tester (D-MT)
Thune (R-SD)
Udall (D-NM)
Warren (D-MA)
Whitehouse (D-RI)
Wicker (R-MS)
Wyden (D-OR)

 

 

Graphic_Twitter_ResearchNotRedTape

Act Now!

1) Find the Washington D.C. phone numbers for your 2 Senators at www.Senate.gov

2) Give them a call and ask them to “support Senator Durbin’s Amendment #4369 to S.2942, the 2017 National Defense Authorization Act.”

3) If they ask for more information you can add:

  • By eliminating Sections 756 and 898 of the legislation, this amendment will ensure that the critical, cutting-edge CHD research happening at the Department of Defense (DoD) can continue.
  • Congenital heart disease (CHD) is the most common birth defect and leading cause of related infant mortality. Even those who receive successful intervention are not cured.  Children and adults with CHD face ongoing, costly, specialized care, and face a lifelong risk of permanent disability and premature death.
  • The DoD medical research related to CHD directly impacts the health and lives of the U.S. military, veterans and their families.
  • For examples of the impact on CHD look here: http://conqueringchd.org/calling-congress-support-research-not-red-tape/
  • We must not let our Federal commitment to research falter.

If you are on Facebook, please consider sharing this message:

For more than twenty years, the Department of Defense’s medical research program has achieved medical research breakthroughs for service members, military families, and veterans. It is one of the largest sources for congenital heart disease (CHD) research. Some in Congress are attempting to strangle this program in red tape. Two provisions inserted into this year’s National Defense Authorization Act would effectively halt this progress and jeopardize the health of military families and veterans. I’m proud to join Senator Durbin and Senators from across the country to remove these provisions so that this life-saving research can continue. http://conqueringchd.org/calling-congress-support-research-not-red-tape/

(Don’t forget to tag your Senators)

If you are on Twitter, please share one of the following tweets:

  • I’m proud to join @SenatorDurbin in supporting life-saving research for service members & vets #ResearchNotRedTape http://bit.ly/1r5M1do
  • I support the #ResearchNotRedTape amendment to fund breakthrough medical research for service members & veterans: http://bit.ly/1UmgbjM
  • .@ [Your Senator’s Handle], please join me in supporting @SenatorDurbin’s #ResearchNotRedTape amendment to fund @DeptofDefense medical research

If you decide to take action, don’t forget to let us know!
Simply send us an email, or complete the I did it! from on our website!

Thank you for your advocating – together we are Conquering CHD!!

Calling on Congress to Support Research, Not Red Tape

Graphic_Twitter_ResearchNotRedTape

The Pediatric Congenital Heart Association is urging Senators to support Illinois Senator Durbin’s Amendment #4369 to S. 2943, the fiscal year 2017 National Defense Authorization Act.  By eliminating Sections 756 and 898 of the legislation, this amendment will ensure that the critical, cutting-edge congenital heart disease research happening at the Department of Defense (DoD) can continue.

Congenital heart disease (CHD) is the most common birth defect and leading cause of related infant mortality. Even those who receive successful intervention are not cured.  Children and adults with CHD face ongoing, costly, specialized care, and face a lifelong risk of permanent disability and premature death.

DoD-sponsored medical research related to CHD directly impacts the health and lives of the U.S. military, veterans and their families. As just one example, researchers are investigating what might explain higher rates of birth defects, including CHD, among children born in military families like these:

Iguina Family PhotoIn January of 2007 our unborn child was diagnosed with a complex CHD via a routine ultrasound. Our lives changed forever that day. We were given three options before his birth – one was a procedure of three palliative surgeries. There were no promises or no miracles that they could give us, but they told us that they would try to repair the tiny heart as best they could. Our son was born in May of 2007 with hypoplastic left heart syndrome, a congenital heart defect where the left side of the heart is underdeveloped and has no function, basically half a heart. Our son Lucas had open heart surgery at 3 days old, a second open heart surgery at 4 months old, and his final open heart surgery at two years old to repair the half a heart he does have. He had many interventions during those first two years of life and continues to do so today. His last intervention was a stent replacement in February, a few months before his 9th birthday. CHD is lifelong and its care is complex. Lucas’ father Carlos is a U.S Army veteran and in 2010 he decided to re-enlist in the U.S Army reserve. It is a huge sacrifice for our country and for our son. Joining the military has helped our family immensely. These last couple of years we have been able to benefit from TriCare Insurance for our son and take advantage of the many benefits the military provides. I say sacrifice because my husband does spend time away from us when he is on military leave and sometimes emergencies come up and I am left to take care of things on my own when he is away. This has become part of our lives, knowing at the end it is all worth it. Our son says he wants to be a soldier like his daddy one day. I pray and hope that with innovation and research he is able to fulfill his heart’s desires! The sacrifice is truly a big one for our family, for our son’s future, and for our country whom we proudly serve! – Jennifer Iguina, Orlando, Florida

…..

Riley Family PhotoI am active duty personnel with the United States National Guard and parent to a child with CHD, the most common birth defect and a leading cause of infant mortality. My daughter Sawyer was born with only half a functioning heart and has undergone two open heart surgeries before her first birthday. She has suffered liver failure, kidney failure, failed attempts to come off the ventilator after surgery, pulmonary hypertension, chronic low blood pressure, dependency upon several continuous infusions, countless trips to the operation room for procedures, three significant cardiac arrests, and three minor ones.  By some combination of incredible care and divine intervention, she survived. At eight months old, Sawyer was listed for transplant and 39 days later, she received the gift of a new, whole heart.  Now, 1 year later, we have many reminders of Sawyer’s struggle to live.  Her tiny chest is riddled with scars, she is fed primarily through a feeding tube, and we are playing catch up on all that she missed. We know that transplant is not a cure – that there is no cure.  We know that not all kids survive the storm of CHD. It is our greatest desire and responsibility to raise awareness, raise funds, and promote research for this incredibly prevalent disease so that more parents can watch their children thrive.  – Patrick Kelly, Indianapolis, IN

…..

Schuh Family PhotoMy daughter Rayna was born with complex CHD and it is nothing short of a medical miracle that she lived until it was discovered when she was 4.  Her broken heart required emergency life-saving surgery to reconnect her “plumbing” to get blood flowing in the right direction and repair an additional hole in her heart.  4 years later, our lives are still a struggle, as we deal with complications both physically and psychologically at home and at school.  Rayna prides herself on her strength and her courage, just like her father, Tim, a veteran of the Gulf War and her grandfather, a veteran of the Vietnam War.  Yet, CHD has certainly had a serious impact on this proud military family.  – Sara Schuh, Manitowoc, WI

Beyond helping people affected by CHD, this research can also help to save money for the military health care system.  Another DoD funded researcher, Dr. Cecilia Lo, has explained how her CHD research “can help reduce healthcare costs for the Military Health System. One study showed an average bill of over $500,000 in the first 2 years for patients with a severe CHD known as hypoplastic left-heart syndrome. Hence, clinical outcomes research that can reduce postsurgical complications will have benefit not only for the patients and their families, but this can also help lessen the economic burden on the Military Health System.”

Research has brought us so far in the last few decades. Children born with critical congenital heart disease just three decades ago would not have lived past the first few weeks of life. Research can also take us so much further in the coming years. However, for this to happen, it is imperative that we not let our Federal commitment to research falter.

We need research, not red tape: Tell your Senators to support Amendment #4369 to S. 2943, the fiscal year 2017 National Defense Authorization Act, today!

Survey: Parents and Public Reporting

SurveyYour experience matters and your input is very valuable!

Read on for important information.  You can access the survey here.

Over the last two years, the Pediatric Congenital Heart Association has been working hard to achieve public reporting and transparency of congenital heart disease outcomes data.  Some of our activities have included our Questions to Ask Your Provider, presentations at national conferences, and our Transparency Summit Series.  Each step of the way, we have relied on parents like you to help guide us.

To learn more about the parent perspective on public reporting, the Children’s Hospital of Philadelphia (CHOP), in conjunction with the Pediatric Congenital Heart Association, Mended Little Hearts, and Sisters by Heart, has developed a survey for parents of children with congenital heart disease.

This survey will help us better understand what information is important for parents making decisions about medical care for their children.  It will also help answer questions about the ideal format for presenting this information, essential facts that should be displayed, and potential barriers parents may face when trying to find this information,

In this survey, we are asking parents of children with congenital heart defects, including parents of children who died from their disease, about the information you want to have when deciding which hospital and physician you choose for your child’s care.  By surveying a broad number of parents, like you, we can better inform our future efforts at public reporting as we work with physicians, hospitals and policy makers to improve access to this important information.

The survey is web-based and completely anonymous.  We estimate that you will need about 20 to 30 minutes to complete all the questions. You do need to be 18 years of age or older to participate.

Let us emphasize that you are free to either participate in this survey or to decide to not participate.  No one will know whether you have decided to participate or not participate.  Participating in the survey, or not participating, will have no impact on the care that your child will receive.

You can access the survey at the following link: https://redcap.chop.edu/surveys/?s=NARY88E93E

Thank you very much for your help with this important project!

Should you have any questions or concerns about the survey or your participating, please do not hesitate to contact the survey team at Children’s Hospital of Philadelphia via email:

Mallory Irons (ironsm@email.chop.edu)

J. William Gaynor, MD (gaynor@email.chop.edu)

Chris Feudtner, MD PhD MPH (feudtner@email.chop.edu)

 

Volunteer at PCHA!

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The Pediatric Congenital Heart Association recognizes the vital importance of volunteers to ensure that we can achieve our mission – to Conquer Congenital Heart Disease.  It takes a community coming together around education, research and awareness to make an impact!

Ready to Volunteer?  Complete our volunteer application, today!

There are many ways to get involved:

Administrative Support – Help with data entry, writing letters, licking envelopes, all the little details that contribute to the big picture of empowering families and Conquering CHD!

Blogging – By making us laugh, cry and touching our hearts, our team of bloggers makes it personal with their words and pictures about experiences so many of us can relate to.

Communications and Marketing – Help us create and communicate the greatness that is PCHA! From graphic design to campaign execution help us tell the story of PCHA.

Donor Development – As a non-profit, PCHA relies heavily on the support of our individual donors.  Help us work with our donors to keep them informed, engaged and supportive of the work of PCHA!

Event Planning – “I wanted to plan a wedding, without the marriage part.” Attention to detail will ensure success for our events like our CHD Galas, dinner fundraisers and conferences.

Fundraising – Help us put the “fun” in Fundraising!  From Jamberry Nails to a birthday challenge help us raise much needed funds that support our vital programming including our Suggested Questions Tool for parents and Transparency Summit Series.

Grant Writing – This takes a special talent.  If you’ve got it, we need you!  Help us secure public and private dollars to support our key programs!

Industry and Corporate Development – Are you connected in the medical or business world? Please consider working with PCHA staff to grow relationships with industry and business partners to broaden our program support.

Legislative Advocacy – Whether it is calling, emailing, or visiting their lawmakers at home or in Washington D.C. the Pediatric Congenital Heart Association advocates are an amazing bunch!

Patient Education – Help us design tools and materials to empower patients and families that meet desired health literacy and diversity standards.

Social Media Ambassador – The impact of the passionate and engaged volunteers who like, share, re-tweet, post and tag has not gone unnoticed.  Our engagement ratio is higher than nearly all other CHD organizations out there!  Using social media to spread awareness and knowledge, indeed is a powerful form of volunteerism.

Volunteer Coordination – If you are a people person, than this is for you! Help us keep our many volunteers engaged and excited about PCHA and all that we do!

If you are interested in volunteering or would like more information, please complete the volunteer application, today!

Volunteer

Guided Questions Tool

Ask these important questions to your care team.

Click here for a printable .pdf version of the Guided Question Tool/Questions to Ask your Cardiac Care Team.

 

QUESTIONS TO ASK THE CARDIAC TEAM

It is hard to hear the words “there is something wrong with your baby’s heart.” But, there is hope! Thanks to new and better treatment, your baby’s chance of surviving is better, with the right care.

At the Pediatric Congenital Heart Association (PCHA), we believe that information is important when making decisions about the care of your child.

For this reason, the following questions were designed to help when you talk with the care team.  Some of this information may not be familiar or hard to understand.  We have included key ideas on the last page to help.  Your care team can help you understand, too.

Experts think there are certain care standards that a quality treatment center should meet.  Not all centers are the same. Some families may want to contact another center to better understand treatment options. Often, second opinions are reassuring; further building trust between you and the team you are working with.

At any time, if you feel you need help or extra support, please contact PCHA.  We do not have all the answers, but we can certainly help guide you.

For more information about congenital heart disease and links to additional resources, please visit our website at conqueringchd.org.

Information About Your Cardiac Center:

  1. How many procedures do you perform each year? How many times have you and your program performed this procedure or ones like it in the last year?  Over the last 4 years?
  1. What is the survival rate for this type of procedure at the time of hospital discharge? After one year? How do your results compare to other centers’ results?
  1. What are the most likely complications or things that can go wrong, with this procedure and how often do they happen within one year of this procedure?
  1. Do you share your results with national data programs such as the STS Database or Impact Registry to help improve care? Is this information open to the public?
  1. Do your surgeons have special training in congenital heart surgery? What other types of special training do your doctors and nurses have?
  1. How are family members included in the decision making process? How will the care team give me information, or reports, before, during, and after the procedure?

Information About Your Hospital Stay:

  1. How many days do you think my child will be in the hospital, both before and after the procedure?
  1. What are my options for when, where and how to deliver my baby? How do you work together with my OB/GYN/Midwife to prepare for my delivery and my care right before and after delivery?
  1. How do you work together with my baby’s doctor after birth and after the procedure?
  1. If my baby needs to stay in the hospital after delivery to prepare for a procedure, where will he/she be? What about after the procedure? Do you have a cardiac intensive care unit (CICU) that cares mainly for children with heart defects?
  1. Will I get to hold my baby before or after the procedure? If so, when and how?
  1. Will I be able to breastfeed my baby after delivery and again after the operation? Will my baby require a special diet? Should I expect my baby to take a bottle or breast feeding without problems?
  1. What do you do to help prepare parents to take their babies home from the hospital?
  1. What support is available for me and my family? For example, can I talk to other families that also have children with heart defects? Do you provide financial, nutritional, and mental health support?

Looking Ahead:

  1. What are the expected long-term results for this heart defect and its procedure? What is my child’s life expectancy or how long is my child expected to live? Are there other possible life-long problems that I need to watch out for?
  1. Thinking about how my child will grow and develop, what should I expect from them as a preschooler, school-age child, a teenager and as an adult?
  1. As my child gets older, does your medical care provide a plan for transitioning from pediatric to adult care?


KEY IDEAS

Procedures – These questions can be used to talk about a number of treatment options including surgery or cardiac catheterization.  Cardiac catheterization, which is not surgery, can be used to find and treat some heart conditions.   During the catheterization the doctor uses a long, thin, flexible tube that is inserted through a blood vessel.

Number of procedures – Total number of procedures performed at a center may be an indicator of quality, with caution given to centers that don’t perform many surgeries.  However, some heart defects are rare and the number of times a procedure is performed may be small, even at the biggest centers.

Survival Rate – Most babies live through their first 30 days after a procedure, a common measurement of success for surgeons.  It is important to ask about survival rates after 30 days, too.

Training – Some doctors have specialty training including certificates for pediatric congenital heart surgery.  Make sure your surgeon has this training.

Data sharing – Most centers collect information, or data, such as number of procedures, survival rates and outcomes, using national data programs such as the Society of Thoracic Surgeons (STS) Database or the Impact Registry.  Many centers now make this information available to the public.  If a center does not give their data to a national data program, or does not share their outcome data publicly, you should ask why.

 

THE IMPORTANCE OF TRANSPARENCY

At the Pediatric Congenital Heart Association (PCHA), our mission is to “Conquer Congenital Heart Disease.”  We believe that patient and family empowerment is essential to achieving this mission.

We support informed decision-making that will allow patients and families to get the best care possible.   Health information that is patient-centered (about the patient), accurate (correct), accessible (available to every person), and communicated in the right way is all part of patient and family empowerment, resulting in improved outcomes in both patient health and family experience.