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

Volunteer Opportunities

Be a part of something bigger.

The mission of the Pediatric Congenital Heart Association is to Conquer Congenital Heart Disease.  We know that we cannot do it alone.

PCHA is growing rapidly in size, reach and programming!  We are forming several new volunteer parent/patient committees and need your help to make them a success.

Getting involved is easy:

  1. Complete the online volunteer application form.
  2. Someone from PCHA will contact you to discuss the best fit for you.
  3. Participate!

Here are just a few areas where we are seeking volunteers:

  • Administration
  • Advocacy
  • Blogging
  • Events
  • Fundraising
  • Newsletter production
  • Patient Education
  • Public Policy
  • Social Media
  • Volunteer Coordination

Join our team today –

Together, we will Conquer CHD!

Volunteer

Help Monitor and Manage CHD

The Pediatric Congenital Heart Association is pleased to support the efforts of the American College of Cardiology to bring you this opportunity:
Whether you are a parent caring for a child with congenital heart disease, or an adult managing your own care, NoMoreClipboard personal health records (PHRs) are a secure, online solution for tracking and monitoring your medical information. This practice, in collaboration with the American College of Cardiology, is offering CHD patients and their families free NoMoreClipboard accounts. You can use your online PHR to organize and update information from your appointments, and securely share information with the other healthcare providers you see.
Use your PHR to:
  • track CHD diagnoses and procedures
  • maintain health histories for all your family members — including conditions, medications, allergies, procedures and immunizations
  • coordinate care among all members of your healthcare team: family physicians, pediatricians,  cardiologists, neurologists and other specialists
Your NoMoreClipboard PHR is created by you and contains only the information you enter. Data is securely stored and password protected, plus you have 24/7 access to medical information whenever you need it, from any web-enabled device.
For more information or to sign- up contact lvie@nomoreclipboard.com

Hospital Costs and Resource Use for Children and Adolescents with Congenital Heart Defects

 

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 In a recent study titled ‘Pediatric inpatient hospital resource use for congenital heart defects,’ published in Birth Defects Research Part A, CDC researchers found that in 2009, hospitalized U.S. children and adolescents who had a congenital heart defect had more expensive hospital stays than those who were hospitalized without a congenital heart defect. The most expensive hospital stays were for infants, children, and adolescents with critical congenital heart defects. This information might help improve public health practices and healthcare planning to adequately serve people of all ages with a congenital heart defect.

We invite you to visit here to read a summary of the key findings from this paper, or here to view the article’s abstract. CDC’s National Center on Birth Defects and Developmental Disabilities is committed to identifying the causes of birth defects, finding opportunities to prevent them, and improving the health of those living with birth defects.  Please share this link with your networks.  On behalf of CDC, we thank you for your continued support and your promotion of CDC’s activities related to birth defects.

CHD Symposium, June 21

The Children’s Heart Foundation, Mended Little Hearts and the Pediatric Congenital Heart Association have joined together to host a National Congenital Heart Defect Symposium. Join us to hear firsthand updates from renowned speakers in congenital heart defect (CHD) treatment and about issues that affect children living with CHDs, including clinical updates, neurodevelopmental issues, exercise, and transitioning to adult CHD care. Get inspired by others and find out what you can do to be a champion for change. 

 
Where: Westin Indianapolis 

When: June 21, 2014

Time: 10:00 a.m. to 5:00 p.m.

Cost:  $35 per person includes materials and lunch.

View the Symposium Flyer here
Check out the exciting list of topics and speakers!

We have negotiated room rates for the Westin Hotel at $119 Single/Double occupancy; $129 Triple occupancy; $139 Quadruple occupancy; plus the current rate of 17% for state and local taxes.  Guest room rates are also available three days pre and post the official event dates, based on availability.
Reservations must be made by May 18, 2014 to secure the MHI room rate.  To make a reservation, please call the hotel at (317) 262-8100.
To get these rates mention “Mended Hearts” when making reservations.

Register here

Questions:  Contact Jodi Lemacks at jodi.lemacks@mendedlittlehearts.org or 804-419-7028

 

CHD Awareness Week – Do Something.

This is a busy time of year for those of us in the Congenital Heart Disease Community.  It is Heart Month.  Today is Go Red Day.  It is also the first day of CHD Awareness Week.

Spreading awareness about the most common birth defect is the critical first step in Conquering CHD.  By spreading awareness, we can educate others about this growing public health burden that is devastating to families across the country.  The blog this week will feature posts from Preemptive Love, the CDC and more, as we work with our partners to help spread awareness in our communities, in Washington D.C. and around the world!

However, I strongly believe that awareness is only impactful when it is paired with education and leads to action. During the frenzy of awareness activities this month, we are encouraging the community to share our message: Be Aware. Learn More. Do Something.
Be Aware

 “I alone cannot change the world, but I can cast a stone across the waters that create many ripples.” – Mother Theresa

Here are a few ideas about what you can do:

1) Be a part of something bigger.

Become a partner of PCHA.  Join the rapidly growing movement that is making a difference.
There is no obligation on your part.  By signing up to receive our emails, you will get an inside look at PCHA.  You will get advanced notice of opportunities to volunteer, advocate and influence.
Sign up today!

2) Use your influence, right away!

Whether you realize it or not, you have a circle of people around you that listen to what you say.  Encourage them to join the movement, too.  Encourage them to sign up, too.  The more people united in messaging and action, the greater impact we can have! 

3) Volunteer.

Your time and talents are very valuable to PCHA.  Our volunteer needs change regularly, but we will try to involve you in any way that we can.  If you are interested in volunteering, please email volunteer@conqueringchd.org.  Include how much time you are able to commit on an average monthly basis and what ways you think you’d like to help.

4) Advocate.

Use your story to make a difference.  We will be asking you to email, call or visit decision makers.  Whether it is a doctor or lawmaker, your story is powerful and can move someone into action!  Click here for our most recent alert to say Thank You to your lawmakers.

5) Donate.
Your story is powerful.  Your dollar is powerful, too.  In order for PCHA to be successful, we need to fund our projects.  Give what you can, every dollar counts.  Give for someone you love, give for yourself, give to help the thousands of people dealing with CHD that will, in turn, benefit from the education, research and advocacy support we provide.
Donate Today!

By popular demand… press release:

Thanks to Mended Little Hearts for the original template:  I modified it a bit for  CHD Awareness week. As I was typing this, it also dawned on me that you should contact your governor or city official’s office and see if they will submit the press release.  Much more likely to be picked up. 🙂

Include things like:

FOR IMMEDIATE RELEASE

Contacts:
Amy Basken
Congenital Heart Disease Advocate (If you have an official title, I would use it)
363 Park Avenue
Prairie du Sac, WI 53578 (I love mail!)
(608) 370-3739
chdadvocacy@gmail.com

Governor Proclaims February 7-14 Congenital Heart Defects Awareness Week.

Madison, WI,  February 1, 2013.   Governor Scott Walker once again signed a public proclamation recognizing the number 1 birth defect in America, affecting 1 in 110 babies born each year.  Congenital heart defects (CHD) is the leading cause of birth defect related death in infants and CHD claims the lives of twice as many children as all forms of childhood cancer combined.  10% of those born with a CHD will not live to see their 18th birthday.  Even in adulthood, CHD remains a leading cause of death and is the number one heart problem for pregnant women.

Congenital Heart Defect Awareness Week is designed to bring attention to this serious issue.  Children diagnosed with a heart defect can have astonishing needs throughout their lifetime, ranging from multiple invasive procedures such as open-heart surgery to daily therapies for breathing and physical rehabilitation.  This takes a toll on school and work life, as well.  CHD is a costly diagnosis both emotionally and financially.

[Insert personal story here if appropriate – keep it short!]

For more information about Congenital Heart Awareness Week and how to get involved with CHD Advocacy, visit www.chdadvocacy.com [change to your organization and your website]

About Amy: [you or your organizations] Amy is a tireless advocate whose youngest of 3 was born with a serious heart defect over 8 years ago. Amy works to use her experience to ensure that those living with CHD have a long and healthy life. Amy has the privilege to work with lawmakers, federal agencies and major health organizations to create, fund and implement public policy related to CHD. She also works to educate and motivate advocates to share their story to make a difference.
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