Medical Advisory Board

Posted by Amy Basken on January 7, 2015

Through Collaboration – we will Conquer CHD.

We are thrilled that we have succeeded in bringing together some of the greatest medical professionals in the field to serve on our medical advisory board. These dedicated folks meet monthly, providing insight, direction and expertise to support the programming of PCHA. We are so grateful!!

Brad Marino, MD, MPP, MSCE – Lurie Children’s Hospital

Co-Chair

Amy Basken, MS – Pediatric Congenital Heart Association

Staff Co-Chair

Jonathan Byrnes, MD – Cincinnati Children’s Hospital

Michelle Gurvitz, MD – Boston Children’s Hospital

Dunbar Ivy, MD – Children’s Hospital Colorado

Jeffrey P. Jacobs, MD – All Children’s Hospital

Kathy Jenkins, MD, MPH – Boston Children’s Hospital

Regina Lantin, MD – Texas Children’s Hospital

William T. Mahle, MD – Children’s Healthcare of Atlanta

Matt Oster, MD, MPH – Children’s Health Care of Atlanta

Sara Pasquali, MD – C.S. Mott Children’s Hospital

Julie Slicker, MS, RD, CSP, CD, CNSD – Children’s Hospital of Wisconsin

James Tweddell, MD – Children’s Hospital of Wisconsin

Advocacy Success – Increased CHD Funding!

Posted by Amy Basken on December 10, 2014

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.!

Advocacy Success – Newborn Screening

Posted by Amy Basken on December 9, 2014

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

Posted by Amy Basken on November 18, 2014

Click here to donate, today!

Give Time.
Give Money.
Give Hope.

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

Posted by Amy Basken on November 10, 2014

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.

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

CHD Awareness Week – Do Something.

Posted by Amy Basken on February 13, 2014

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.

“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!

100’s of Hearts

Posted by Amy Basken on January 27, 2014

Every day, there are over 100 babies born with a heart defect in the U.S. That’s thousands of hearts each year. Add those to the 100’s and 100’s and 100’s who are already living with heart defects. That’s millions of hearts.

But let’s bring into focus just one heart. That one baby who, by all odds, was that 1 in 110. That one born with the heart defect. It could be your daughter, your son, your niece or your nephew. It could be your Mom, your brother, your neighbor, your classmate, or even you. Who do you know that has a story about heart defects?

The Pediatric Congenital Heart Association is committed to bringing these stories together, amplifying them to make a difference.

Uniting a community is a big task, however. We can’t do it without your help. PCHA is primarily funded by individual donors, like you. In order to be successful, we need to unite a community of partners and supporters.

By making a simple donation of $20 or more to our 100’s of Hearts Campaign, you are helping to empower the 100’s, thousands perhaps millions.

Through Education – “When we first learned about my daughter’s heart defect, the internet was a scary place to go for information.” – Mother to beautiful girl with Hypoplastic Left Heart Syndrome. Our Trusted Resources program will provide quality information to people when they need it, where they need it.

Through Research – “My son is with us today beacause of life saving research.” – Mother of child who’s defect was detected through screening. Through promotion of research, as well as collaboration in new and existing projects, we recognize that research is key to improving outcomes.

Through Advocacy – “The statistics will always be there, it’s your story that we remember.” – U.S. Senate Staff Member. Empowering patients to tell their story to lawmakers

Pick one special heart to honor. Help us reach 100 hearts!

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