Ethan Kolodzinski

EthanK

When our twins were born, it wasn’t ideal timing. Labor started at 39 weeks, so we knew they probably wouldn’t need NICU, but we were moving into a new house that day. As we drove to the hospital, friends and family descended on our place to move us, so we figured we’d have the babies, and be home by the next night. We thought we’d leisurely deal with the crazy mess of a move over the next couple weeks. We were very, very wrong.

When the boys were born, Lucas was fine, but Ethan didn’t pink up. We were able to hold him for a total of about 10 minutes before he was rushed up to the NICU. He was found to have a hole in one lung, which they were able to resolve, but his condition didn’t improve. After four hours of trying everything they could, the staff suspected a more serious problem than they could treat, even with a Level III NICU. When he was 8 hours old, he arrived at Children’s Hospital of Wisconsin under suspicion of a heart defect. He went straight to the Cardiac Intensive Care Unit, where he was quickly diagnosed with an obstructed supracardiac total anomalous pulmonary venous return. At 3:30 a.m. and only 11 hours old, our brand new baby was wheeled away for emergency open heart surgery. If he had not undergone the surgery when he did, he only would have survived a few more hours.

Ethan’s defect is rare, and not one that is easily diagnosed before birth, so it was like a bomb going off in the middle of our lives. None of our other children had ever had any kind of serious illness or surgery, so we were completely unprepared for something like this. He spent two weeks in the CICU, and another week and a half on another floor. Those were the hardest three and a half weeks of our lives. It was gut-wrenching to sit next to Ethan, unable to hold him, while snuggling his perfectly healthy twin. His siblings desperately wanted him to come home, and it broke our hearts to tell them over and over, “Not yet.” The moment we walked out of that hospital with both our boys is one we will never forget.

Outside of weighing less than his twin, and scars he totes, you’d never know what a rough start Ethan had. The boys are 18 months old now, and we cannot imagine what our, and especially Lucas’s life would be like without him. It is a miracle how we have gone from being hours shy of losing him, to him being able to live a virtually normal life. Half of our dynamic duo wouldn’t be here, if not for the skills of Drs. Jim Tweddell and Mike Mitchell, and the rest of the amazing cardiac team that Children’s has assembled.

We are so incredibly blessed to live when, and where, there was the knowledge and technology available to save our sweet little boy.

CDC Awards Next Round of CHD Surveillance Grants

At the Pediatric Congenital Heart Association, advocating for increased funding for data collection and public health research has always been a top priority.  Each year, our advocates call on Congress to give money to the CDC as part of the Congenital Heart Futures Act.  Shortly after this new law passed in 2010, the CDC awarded 3 four-year grants to work on CHD data collection in teens and adults. Thanks to the great efforts of our advocates, we are excited to see this work being expanded upon. This next round increases the number of grants from 3 to 5, and expands the work to look at children, too. Thank you to all of you have shared your voice to advocate for CHD across the lifespan!  Together – we are Conquering CHD!

Read more about it in this Capitol Hill Announcement:

 

Monday, September 21, 2015

CDC Announces New Cooperative Agreement Awards on Congenital Heart Defects

CDC’s National Center on Birth Defects and Developmental Disabilities is pleased to announce the five sites that have been funded to expand upon population-based tracking of adolescents and adults with congenital heart defects (CHDs). Emory University, Duke University, University of Colorado – Denver, New York State Department of Health, and the University of Utah will be awarded a total of $2.3 million for the first year of this four year project.

Emory University and New York State Department of Health were also funded from 2012-2015 and will build on their existing infrastructure for population-based tracking of CHDs to:

  • conduct longitudinal follow up of adolescents and adults identified with CHDs
  • identify factors associated with optimal healthcare and improved outcomes
  • evaluate factors that impede appropriate transition from pediatric to adult care
  • expand tracking activities to include the lifespan
  • develop pilot projects to translate public health best practices into action

Duke University, University of Colorado – Denver, and the University of Utah will develop and implement innovative approaches for conducting population-based tracking of CHDs focused on adolescents and adults, and potentially across the lifespan, by linking existing data sources. Tracking data will be used for descriptive epidemiology, to identify comorbidities, and examine healthcare utilization and referral to timely and appropriate services for adolescents and adults with CHDs.

Congenital Heart Defects

CHDs are one of the most prevalent birth defects in the United States affecting about one percent of all births and are a leading cause of birth defect-associated infant mortality, morbidity, and healthcare costs.  However, most current efforts to conduct population-based tracking of CHDs have focused on monitoring newborns, and little data exist on the prevalence and descriptive epidemiology of CHDs beyond early childhood in the United States.  Current estimates suggest there are over 2 million people living with a CHD in the United States.  Despite the public health burden, the lack of population-based tracking for CHDs among individuals of all ages in the United States means there are no reliable data on the actual prevalence, and the type and number of health services required to address the health needs of these individuals, costs of such health services, and longer term outcomes including comorbidities and survival of individuals living with CHDs. These awards will provide data to address such concerns, including transition from adolescent to adult care.

For more information about CHD, see CDC’s website: http://www.cdc.gov/heartdefects/

Save the Date: 2016 Legislative Conference

Save the Date

Mark your calendar!

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

Congenital Heart Legislative Conference 2016

February 1-2, 2016
Liaison Capitol Hill, 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!

More information and online registration will be available this fall.

Summit on Transparency and Public Reporting of Pediatric and Congenital Heart Disease Outcomes

The Pediatric Congenital Heart Association was thrilled to have the opportunity to host the recent Summit on Transparency and Public Reporting.  Although, it is hard to capture the importance of this meeting on paper, below is a release summarizing the event. We are certain that you will continue to see the impact of this in weeks and months to come.

Summit on Transparency and Public Reporting

Hearing that there is something wrong with your baby’s heart is devastating. In the face of this news, parents simply want what is best for their child.  This was the case for Amy and Brian Basken, the parents of Nicholas.  Nicholas was born with a heart defect that required surgery when he was just 3 days old. “I felt out of control,” recalls Basken. “Looking back, I was asking questions that didn’t matter, when I should have been asking how well they were able to take care of my child.”

Basken is now co-founder and Director of Programs at the Pediatric Congenital Heart Association (PCHA).  Their mission is to “Conquer Congenital Heart Disease.”  PCHA believes that helping patient and family empowerment is essential to achieving this mission. “I want to help others get the vital information they need so they don’t have to feel the way I did.”

PCHA supports informed decision-making that will allow patients and families to obtain the best medical care possible.   Health information that is patient-centered, accurate, accessible, and effectively communicated is a necessary component of patient and family empowerment, resulting in informed decision-making and improved outcomes in both patient health and family experience.

As the first step toward finding a lasting policy solution, the Pediatric Congenital Heart Association was honored to host the Summit on Transparency and Public Reporting of Pediatric and Congenital Heart Disease Outcomes at the Ann and Robert H. Lurie Children’s Hospital, Chicago, Il on August 19-20, 2015.  National experts on congenital heart disease data and reporting met to discuss the history of public reporting, data collection methodology and reporting strategies. This multi-disciplinary group represented surgeons, practitioners, professional societies, payers, federal agencies, policy makers, parents and patients working collaboratively to achieve consensus on the important issue of public reporting.

Dr. Bradley S. Marino, chair of the Pediatric Congenital Heart Association Medical Advisory Board, and co-coordinator of the event noted “this is the first-of-its-kind meeting in the field where parents are driving the policy conversation in collaboration with the experts – resulting in groundbreaking solutions that will shape the future of pediatric cardiovascular disease care.”

The work of the Summit helped to define areas of consensus and opportunities, which will be outlined in a future publication.  Basken notes: “PCHA is already working on next steps – talking to policy makers, considering our options. We have momentum to make lasting change, to improve parent access to information and improve overall quality of care.”

Happy 2nd Birthday, PCHA!

Its our Birthday Birthday

We’re Celebrating!
Our 2nd Birthday and
Two Years Conquering CHD!

Look how much we’ve grown:
This list highlights our programs that have had a national impact in the last year, including the meaningful Summit on Transparency and Public Reporting** and our in demand Guided Questions Tool.Our programs work to:
Give Knowledge
  • Hosted Congenital Heart Legislative Conference*
  • Hosted Summit on Transparency and Public Reporting**
  • Participated in Hospital Site Visits
  • Presented at National Conferences
  • Launched Questions to Ask your Provider
  • Developed our Advocacy Toolkit
Give a Voice
  • Created Advocate Network Community
  • Supported Advocates to Contact Lawmakers
  • Visited Legislators
  • Informed National Policy
Give Hope
  • Promoted Federal Research Funding
  • Created Patient Centered Research Protocols
  • Shared Research Findings
  • Created Original, Inspirational Materials
  • Distribute Original Blog Posts by Parents and Patients

We need your help to continue to grow:
We want to continue these important projects, but we cannot do it without your help! Please donate to the Pediatric Congenital Heart Association to ensure we can continue to give knowledge, a voice, and hope as we work together to Conquer CHD!!

Donate Now

*The Legislative Conference was hosted in collaboration with Children’s Heart Foundation and Adult Congenital Heart Association
**Thank you to Ann and Robert H. Lurie Children’s Hospital for sponsoring the Transparency Summit

“I am Conquering CHD” Fundraising Campaign

Looking for a way to give back to the congenital heart community?   Want to do something that will make a difference for others with CHD?

Join our “I am Conquering CHD” Fundraising Campaign, benefiting the Pediatric Congenital Heart Association.

Fundraising Meme

August 21-23, 2015 volunteers from across the country will be celebrating PCHA’s second anniversary and joining together participating in fundraising activities to help conquer the most common birth defect.

Big or small, each activity helps support the vital education, research and advocacy programs of PCHA.

We have a lot of great tools to help you fund raise:

  • Advocacy Toolkit – Check out this comprehensive online guide packed full with ideas and strategies to make any fundraising activity successful
  • Personal Fundraising Pages – These pages make it easy to collect donations from friends and family near and far!
  • Fundraiser Starter Kit – Once you’ve registered your fundraiser, this kit provides you with all the files and resources you need to promote your event
  • Fundraising Network – Share ideas and learn from others who are interested in fundraising, too!
  • PCHA Online Store – Visit our store, today! Purchase fun items to raise awareness and promote PCHA during your fundraising activity. You don’t want to miss our great PCHA t-shirts, popular buttons, and unforgettable strawberry scented pens!

Start now, by checking out our Fundraising Toolkit, then email advocacy@conqueringchd.org to get your fundraiser registered and on the list, today!

“I am Conquering CHD” fundraising Activities: (last updated July 21)
Aug 21 – Toast for Tiny Hearts; Evanston, Il
Aug 22 – Purse Purge Coin Drive; Denver, CO
Aug 22 – Lunch for Little Hearts; Manitowoc, WI
Aug 22 – Purse Purge Coin Drive; Duluth, MN
Aug 23 – Mini Dance-a-thon, Madison; WI
Aug 21-23 – “I am the Change” Coin Drive; Denver, CO

 

PCHA Fundraising Toolkit

Toolkit graphicPCHA Fundraising Tool Kit

“No one has ever become poor by giving.” – Anne Frank

WELCOME!

Welcome and Thank YOU for your interest in leading a fundraising event for PCHA!  We are so grateful for your efforts and support in advancing PCHA’s mission to “Conquer Congenital Heart Disease” through education, research, and advocacy.  Please read the packet carefully and reach out to advocacy@conqueringchd.org with any questions.

IMPORTANCE OF FUNDRAISING

Fundraising plays a vital role in the growth of PCHA.  Fundraising not only helps to support PCHA and its mission financially, it increases awareness and education not only about PCHA but about CHD in general.  What’s not to love about that?!

ABOUT THIS TOOLKIT

It is all about YOU!  This toolkit is a guide to help make planning and executing your fundraising event as easy as possible.  The toolkit is here to help you with fundraising ideas, gives you helpful materials and marketing, guides you through what to do with donations, and answers any questions you might have to make your event successful and fun!

YOU ARE NOT ALONE!

You might be thinking, “Do I really want to sign up for this???”  YES!!! And we are here to help – whether that is to help you with a question here or there, or to guide you every step of the way.  We want to make sure that not only is your event a success, but that you have fun with it as well!

LET THE PLANNING BEGIN!

The PCHA Fundraising Committee

Remember, you are not selling anything.  You are providing others with an opportunity to give to a greater cause.  The biggest reason why people do not donate is because they were never asked.

 

Included in the Toolkit:

10 Tips to Get You Started

Frequently Asked Questions.

About CHD

About PCHA

About Fundraising

Fundraising Ideas

For Kids

At Work

For All

Materials and Marketing

Selecting the date and location

Promoting your activity

Fundraising Starter Kit

Thank your contributors

Share your success!

Dealing with Donations

Collecting Donations

Submitting donations

 

 

 

10 Tips to Get You Started:

 

  1. Choose the “right” activity.Consider your abilities keeping in mind size, interest, talents, goals and time.
  2. Select a date. Choose a time that is appropriate and convenient for those who will be participating.  More information can be found in the Materials and Marketing Sections.
  3. Let us know. Email advocacy@conqueringchd.org with the name, date, location and key contact for your fundraising activity.  We will send your Fundraising Starter Kit with the introductory materials you can use to ensure a successful activity. We can also help answer any questions you may have along the way.
  4. Join our Facebook Fundraising Network. This is a great resource for asking questions and learning from others.  You will be given information about how to access this resource with your Fundraising Starter Kit.
  5. Consider forming a committee. The larger the event, the more help you may want to recruit.
  6. Identify your audience. Consider who is most likely to participate and support in the type of activity you have selected.
  7. Develop a budget. Many activities don’t require any additional expense.  However, larger events may.  Identify expenses and possible sources of funds.  Consider what you may be able to have donated in order to keep costs down.
  8. Develop a timeline. This is an important strategy to make sure that all necessary steps are completed in advance of the activity.
  9. Promote your activity. Share your efforts via social media, allowing you to connect with others and build momentum for your activity.
  10. Have Fun!!

 

 

 

Frequently Asked Questions

 

About CHD

 

What does CHD stand for?

CHD stands for Congenital Heart Disease, a structural abnormality of the heart that occurs at birth with chronic secondary complications that can last throughout ones life.

 

How common is CHD?

CHD is the most common birth defect.  It occurs in nearly 1 in 100 births.  Each year approximately 40,000 babies are born with CHD in the U.S., that’s 1 every 15 minutes.

 

How serious is CHD?

Unfortunately, CHD is also the leading cause of birth defect related death.  33% of babies born with CHD will require life-saving treatment in the first weeks and months of life.  Thanks to medical advances, survival is improving.  Once an entirely fatal disease, more than 85% of babies born with CHD will live to see their 18th birthday.  However, survival is proving to bring its own challenges.

 

Is there a cure?

There is no cure for CHD.  Children and adults born with CHD require ongoing specialized care and face an ongoing risk of complications.

 

About PCHA

 

Who is PCHA?

The Pediatric Congenital Heart Association is a patient advocacy organization whose mission is to “Conquer Congenital Heart Disease.”  We are accomplishing this through collaboration with patients, parents, providers, and partner organizations in order to effectively advocate for improved quality and outcomes through CHD education, research and awareness.

 

Founded in 2013, the Pediatric Congenital Heart Association quickly filled a niche as the voice of the congenital heart patient.  Our Leadership includes more than 30 patients, parents and providers from across the country making up our Board, volunteer committees and our Medical Advisory Board.

 

Where is PCHA located?

We are a national non-profit based in Madison, WI.   However, our leadership, medical advisory board and volunteer network extend across all 50 states.

 

What percentage of my gift goes directly to programs?

PCHA works hard to ensure that every dollar given by our donors is used to make a difference in the CHD community.  90% of our funding goes directly to programs.

 

What are PCHA’s key programs?

Our activities are focused in three areas:

 

Education

Knowledge is power. PCHA seeks to empower patients and families by providing them with the educational resources they need to achieve the highest quality care available to them. Our programs are designed to reach the parents themselves, while at the same time address necessary changes to patient care systems to promote a culture of engaged patient care.

Research

PCHA understands the desperate need for research to improve outcomes for patients with CHD. We work with federal agencies, medical professionals and investigators to promote patient focused research. PCHA promotes patient engagement in research from protocol development and implementation through information dissemination.  We also advocate for robust funding mechanisms that address critical gaps in understanding of CHD.

Advocacy

PCHA seeks to amplify the voice of the CHD community to inform policymakers of the significant public health burden related to CHD. By creating a solid grass-roots foundation, we leverage this voice to successfully inform legislators, administrators, government agencies and other key stakeholders to move forward key policy changes that impact the congenital heart disease community as a whole.

 

 

Is PCHA a religious or faith-based organization?

PCHA is not a religious or faith based organization.  We do not and shall not discriminate on the basis of race, color, religion (creed), gender, gender expression, age, national origin (ancestry), disability, marital status, sexual orientation, or military status, in any of its activities or operations.

 

What is the best way I can help?

Join our network to Conquer CHD.  Supporting our mission through fundraising is an excellent first step.  Additional ways to get involved include volunteering and sharing your story. Visit our website at conqueringchd.org to learn more.

 

 

About Fundraising

 

What is a fundraising campaign?
We believe that there is power in numbers.  A fundraising campaign provides a time frame and theme around which we can work together to support the vital programs of the Pediatric Congenital Heart Association.  By participating in the campaign you can receive leadership and peer support for your fundraising efforts.

 

How do I promote my fundraising activity? Do you have a logo or flyers I could use?

Check out our Materials and Marketing section for fundraising tips, messaging and logos and to learn more about the fundraising toolkit you will receive in the mail.  Be certain to properly attribute all content (logos, images, etc) throughout your campaign.  When using the PCHA logo, you are indirectly representing the organization.  It is important to stay true to the mission of the organization.

 

Will my supporters receive tax receipts for their donations?
The Pediatric Congenital Heart Association can provide tax receipts for check and credit card donations to donors who contribute more than $50 and an accompanying donation slip. Additional instructions and printable forms are available in the Dealing with Donations section of this document.  Please note that if you are using part of people’s donations to cover event expenses, they must be informed in advance that their tax receipt will only reflect the amount PCHA receives.

 

Can a PCHA representative attend my event?
We can’t guarantee a representative. However, we often are able to attend activities near our Madison and Denver offices.  If you are interested in having a representative attend your event, please contact advocacy@conqeuringchd.org.

 

What will PCHA do to promote or publicize my fundraiser?
PCHA does not promote third-party fundraisers, individually.  During our CHD Awareness Week and I am Conquering CHD campaigns, we do provide an updated list of activities on our website through our blog.  We also regularly share a list of upcoming activities in our newsletters.

 

Can I hold a raffle or auction for PCHA?
Laws regarding events or appeals that involve gambling differ from state to state. It is your responsibility to ensure that the event complies with state laws. Tickets purchased for gambling activities are not tax-deductible.

 

Can I sell an item or service to benefit PCHA?
Absolutely.  Partnering with a business or service to raise funds for a non-profit has become a common practice.  This is called “cause marketing.”  In order to maintain positive and compliant cause marketing relationships, PCHA has established the cause marketing guidelines.

 

Will event sponsors or vendors receive tax receipts for their donations?
As a third party fundraiser, PCHA cannot provide tax receipts for donations to your event. This is because these contributions are being made to you for your fundraising effort, and not directly to PCHA. You can promote their contribution/participation on your activity specific materials.

 

I have completed my fundraising activity. Where and how do I send in my donations?
Thank you so much for supporting the Pediatric Congenital Heart Association. Please review our Dealing with Donations guidelines, for more information about submitting your donations.  Don’t forget to use our helpful tracking form!

 

 

Fundraising Ideas

For Kids

Engaging children in fundraising activities can be a powerful learning opportunity.  Include children in these activities, or work with teachers, day care, or school administration to get everyone in on the fun. Some of the following ideas can even be combined.

 

Change Makers

Purse Purge

Coin Collection

Donations for chores

Stands/Sales

Lemonade Stand

Brat/Corn/Food Stand

Car Wash

Bake Sale

Craft Sale

Concession Stand

Face-painting

PCHA T-shirts

Events

Read/Dance/Jump/Bike –a-thon

Talent show

Fashion Show

Birthday Gift Donation

 

 

 

At Work

Try some of these fun activities at the office. You can also ask if your employer offers a matching gift program and/or payroll deduction programs.

 

Jeans/Dress Down Day

Ice Cream Social

Change Makers (see above)

“Swear” Jar

Awareness Day

 

 

For All

 

Night Out

% Give-back at area restaurants

Gathering

Lunch for Little Hearts

Tea for Tiny Hearts

Toast for Tiny Hearts

Leadership Dinner

 

Stands/Sales

Brat/Corn/Food Stand

Concession Stand

Car WashBook Sale

Art Sale

Garage Sale

Craft Sale

Bake Sale

Cause Marketing (Jamberry, Pampered Chef, Stella, etc)

Events

Run/WalkGolf/Bowling Tournament

Cook-off

Fashion Show

Ice Cream Social

Pancake Breakfast

 

Pledge Challenges

Virtual Run/Walk/Marathon*

24 Hour Fast*

Read/dance/jump/bike –a-thon*

 

*Personal Fundraising Pages are perfect for pledge challenges!

 

Materials and Marketing

Selecting the date and location

Planning in conjunction with a larger event can increase participation.  There are national events such as CHD Awareness Week in March, or I am Conquering CHD Campaign in August.  Or you can find a local event, such as community garage sale weekend, larger craft fair, or during tourist season.

 

Promoting your activity

Social Media

Creating an event on Facebook allows you to share, tweet and email a link to your activity.  Change your profile or personal page to reflect the activity.

 

Email

Identify a group of potential supporters to email about your campaign.  Reach out to friends, relatives, co-workers, community group members, teachers and others who may not normally find you on social media.  Make it heartfelt; share your story.

 

Your Personal Fundraising Page

If you have a need to collect credit card donations online, you can create your own personal fundraising activity page (http://conqueringchd.causevox.com/) Through your page, you can send emails and post the page link directly to social media.  Your fundraising page also has a blogging component that allows you to keep interested people up to date on your progress.  A password to create your page will be provided with the Fundraising Starter Kit, after you submit your activity info.

 

From the Heart

Stories and photos make an impression. Throughout the promotion of your campaign, share your story and use pictures to add to the message.  You can also use our stories and photos to describe how patients and families have been impacted by PCHA.  Remind others of the difference they can make by participating in your fundraising activity.

 

Fundraising Starter Kit

Once you have selected your activity, email advocacy@conqueringchd.org to receive your fundraising toolkit.  Be sure to include the name, date and location of the activity as well as the name, email, phone and address of the primary contact for the event. We will send you a starter kit that includes the following:

 

Promotional Items:

5 PCHA promotional Cards

5 PCHA Strawberry Pens

5 I am Conquering CHD Buttons

25 Temporary Tattoos

Donation Envelope

 

Digital File:

PCHA LogosSample text

PCHA Program Summary

CHD Fact Sheet

Change Jar Printable file

Donation Slips

Donation Tracking Form

PCHA Stories

Network Privileges:

Fundraising Page Login

Access to Fundraising Network Facebook Group

 

*additional promotional materials are available for purchase on our website, including PCHA t-shirts to wear to your event.

 

 

 

Thank your contributors

This is the most important step.  We are guiding others to feel good about giving.  Let them know that they are making a difference.  Let them know you are grateful for their support.  Thank them directly with an email, or indirectly through your event page and social media.

Share your success!

Your passion is contagious.  Use social media and email to tell others about your success.  Share fundraising totals and pictures, and be sure to tag us on Facebook, Twitter and Instagram!

 

 

Dealing with Donations

 

Collecting Donations

Change Jars

Collecting change is one of the simplest ways to engage others in donating.  Any container can serve as a change jar.  A mason jar, an old wipes container, a clean food container.  Print off an “I am the Change label” you will receive in your Fundraising Starter Kit and glue or tape it to the jar.  Feel free to embellish the jar to make it more appealing.  Change jars can be carried around with you, centered on your desk, placed on-site at an event, or on the counter at the point-of-sale at any retail outlet where it can be monitored at all times. Be creative and have fun with it!

 

Fundraising Tracking Form
In order to ensure necessary tracking of donations and money received, you must record offline donation information on the Fundraising Tracking Form you will receive in your Fundraising Starter Kit.  Any incomplete entry on the tracking form will be considered anonymous.  You can remind donors that only donations over $50 will be provided with a tax receipt sent to the mailing address they provide.  To identify your total funds raised, be sure to include funds raised on your personal fundraising activity page to the form.

 

Donation Forms

Donation forms are useful if multiple people need to provide their information at the same time, someone would like to take information home to donate later, or donors would like to provide credit card information without using an online portal.  Patrons simply fill in their information, including check # or write a credit card number to make a donation and either return it to you with their form of payment, or mail the credit card information to the address on the form.

 

Credit Card

A donor can complete a donation slip with their credit card information.  Ask donors to fill in their information and let them know that credit cards are processed securely in our offices. However, we encourage any donor who would like to use a credit card to donate online via your personal fundraising activity page, or through the donation button on our website.  Both of these options are mobile device compatible and can be used at the time of your activity or event.  If using our website for donations, in the comment section, please have them indicate the name of your fundraiser in order for you to receive credit for their contribution.  By donating online, we have the necessary information to provide donors over $50 with a tax receipt.

 

Submitting donations

We can only accept credit cards or checks made out to Pediatric Congenital Heart Association or PCHA. For security purposes: please convert any cash donations to check or money order before mailing.
To minimize administrative burden, all donations should be listed on Fundraising Tracking Form which must accompany your donations. Please complete the form with your first and last name, event date and event title. Make sure the total is equal to the amount you submit to PCHA. Donations over $50 submitted without a full name and address are considered “anonymous” and the donor will not receive a receipt.

 

Sooner rather than later
In order to send donors timely receipts, please submit your donations as soon after the activity as possible.  If you are waiting for expected donations, please submit what you have, and share the rest later.  Please use a new Donation Tracking Form for each set of donations you submit.

 

Tax receipts
Monetary donations to PCHA are tax-deductible and for donations over $50, we mail receipts directly to donors using their contact information from the Fundraising Tracking Form and the Donation Forms you submit. Remember: donations PCHA receives without a full name and address are considered “anonymous” and the donor will not receive a receipt.  Important: If only a portion of the amount you raise will be donated (i.e.: “a $75 dinner reservation of which $50 will be donated”), attendees must be informed in advance that their tax receipt will only reflect the amount PCHA receives.

 

Thank you!

And remember, if at any time you have questions, please contact advocacy@conqueringchd.org

PCHA-2C-V

Research Matters: Risk and Prevalence of Developmental Delay in Young Children with Congenital Heart Disease

The Pediatric Congenital Heart Association is thrilled to bring you a new series titled Research Matters. In their commitment to make research meaningful and accessible to patients and families, members of our Medical Advisory Board have created summaries of important research and describe what it means for you.

research matters

Risk and Prevalence of Developmental Delay in Young Children with Congenital Heart Disease

By Erica Sood, PhD, Pediatric Psychologist

The journal Pediatrics recently published a study examining how cognitive, language and motor development change over time in young children with CHD.* Findings highlight the importance of repeated developmental evaluations for children with complex CHD to identify those who may benefit from early developmental intervention. You can find the complete study here.

 

About this Study:
  • The purpose of this study was to evaluate changes in cognitive, language, and motor skills during the first three years of life in children with CHD.
  • The study sample consisted of 99 children who participated in three or more developmental evaluations through the Herma Heart Center Developmental Follow-up Clinic at Children’s Hospital of Wisconsin.
  • The Bayley Scales of Infant and Toddler Development, Third Edition was completed as part of the developmental evaluation. This is a commonly used developmental test that measures a child’s cognitive, language and motor skills through a series of play activities.

 

Main Findings:
  • Most children (75%) exhibited delay in one or more developmental areas at some point during the first three years of life.
    • While delays were often mild, more severe delay occurred in 74% of children with a known genetic syndrome, 33% of children with single ventricle anatomy, and 21% of children with two-ventricle anatomy.
  • Nineteen percent of children whose development was in the average range at one year of age were later found to have a delay in one or more developmental areas.
  • During infancy, children tended to have greatest difficulty with motor skills. For children without known genetic syndromes, motor development improved over time and was typically within the average range by three years of age. Children with genetic syndromes generally continued to exhibit delays in motor skills throughout the first three years of life.
  • Children who required longer cardiopulmonary bypass time and supplemental tube feeding and who were hospitalized more recently tended to have greater difficulty with developmental tasks.
What this Means:
  • Developmental delays in children with CHD are common and should be expected. Children with genetic syndromes and those who require longer cardiopulmonary bypass times, supplemental tube feeding, or frequent hospitalizations appear to be at particularly high risk for developmental delays.
  • Repeated developmental evaluations should be standard of care for children with complex CHD to identify those who may benefit from early developmental intervention. Repeated developmental evaluations for children with complex CHD is recommended by the American Heart Association and the American Academy of Pediatrics.
    • Many of the delays exhibited by children with CHD were mild and may not have been identified without a formal developmental evaluation. Even mild delays, without intervention, can impact later development and learning.
    • In some children, delays emerged over time and may not have been identified through a developmental evaluation at a single time point.
    • When developmental delay is identified, early developmental intervention (for example, physical therapy or speech therapy) can help the child meet developmental milestones and reach his or her full potential.

For more information about developmental evaluation for children with CHD, please see the Cardiology Patient Page titled Supporting Development in Children with Congenital Heart Disease.

*Mussatto KA, Hoffmann RG, Hoffman GM, Tweddell JS, Bear L, Cao Y, Brosig C. Risk and prevalence of developmental delay in young children with congenital heart disease. Pediatrics 2014; 133: e570-e577

Sood_Erica_CJB0783_pp

Dr. Sood is a pediatric psychologist in the Nemours Cardiac Center and Assistant Professor of Pediatrics at Sidney Kimmel Medical College at Thomas Jefferson University. She received her PhD in Clinical Psychology from Temple University and completed residency and fellowship in Pediatric Psychology at Nemours/duPont Hospital for Children. She directs the Nemours Cardiac Learning and Early Development (LEAD) Program and provides psychological consultation and therapy for children with congenital heart disease and their families. Dr. Sood also conducts research on neurodevelopmental outcomes, developmental care and family psychosocial interventions for this patient population. She serves on the editorial board for Clinical Practice in Pediatric Psychology and is an active member of the Society of Pediatric Psychology’s Cardiology Special Interest Group and the Cardiac Neurodevelopmental Outcomes Collaborative. Dr. Sood provides supervision and mentorship to psychology fellows working within the Nemours Cardiac Center to promote psychologist involvement in the field of pediatric cardiology.

Adam McDade

Adam McDade

I will never forget hearing my husband ask the doctor “Why is he purple? Why isn’t he breathing?” immediately after Adam was born.

He was our third child, the other two were born healthy babies and we had no reason to believe anything would be different with Adam. However, he was quickly taken out of the room for testing. Within 6 hours of being born Adam and I had both been discharged and were heading to UF/Shands so that more testing could be done. Before they transported Adam they brought him into the room while he was in his mobile ICU. This little boy who I had not yet been able to hug and kiss looked very peaceful and content but the tubes, wires, bandages made for such an unexpected scene. Inside I kept thinking “Everything is going to be fine, the staff is just being extremely thorough but everything will be fine. He probably has a small hole in his heart, I’m sure we’ll be sent home with medicine and the hole will close on it’s own.”

Five hours after arriving at Shands, two doctors sat us down. “Your son has a severe heart defect.”

Oh, those words.

Those words were so heavy.

They told us Adam had tricuspid atresia. His tricuspid valve never formed and sub sequentially his right ventricle had never formed.

“Is he going to die?”
“Will we ever take him home from the hospital?”
“Will he ever meet his older brother and sister?”

Of course these questions immediately overwhelmed me, although I was too scared to consider asking. After the long discussion Adam and his anatomy all I could ask without being scared of the answer was “What advice can you give us?” As one doctor stared blankly I will never forget how the other popped in “You’re going to have three kids, you will love them all the same, one will just have a different heart.” And with that response I was immediately filled with hope. Hope that Adam wasn’t going to die, hope that we would take him home from the hospital and hope that he would meet his brother and sisters.

Adam was blessed with great anatomy as far as TA babies are concerned, he was able to skip what is typically the first of three procedures. On October 22, 2014, four days old, Adam was discharged with no oxygen, no medicine, nothing. We had weekly cardiology appointments and the plan was for him to have his first open heart surgery around 4 months. During this waiting period Adam thrived, he was doing a good job putting on weight and staying healthy.

At 14 weeks old he had his first open heart surgery, the Glenn. There were ups and downs but after just 6 days he was discharged. The surgery was tough, the days and nights post surgery were even harder. However, all of that was finally behind us and we were excited to live life with surgery behind us and Adam in a stable condition.

He will have another open heart surgery, the Fontan, when he is about 2 years old.

We feel so honored to be Adam‘s parents, this little guy is truly amazing.

Breaking News: NIH multi-centered research renewed!

The Pediatric Congenital Heart Association is thrilled to learn that the NHLBI has approved a renewal of the Pediatric Heart Network for another grant cycle.  It has been approved for a 7-year grant period, with a total budget of approximately $52M.  This research network supports the necessary infrastructure for multi-centered research collaboration. We look forward to sharing more information as it becomes available!

research matters