Press Alert: Announcing New Partnership with Rapid SOS

Posted by Amy Basken on July 11, 2016

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

Posted by Amy Basken on July 11, 2016

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

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.

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.

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

Survey: Parents and Public Reporting

Posted by Amy Basken on April 21, 2016

Your 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)

Congenital Heart Futures Reauthorization Act (S.2248/H.R.3952)

Posted by Amy Basken on November 5, 2015

Congenital Heart Disease Legislation

In November, 2015, the Congenital Heart Futures Act Reauthorization Bill was introduced in the Senate (S.2248) and House (H.R.3952) by legislative champions:

Senator Dick Durbin (D-IL)
Senator Bob Casey (D-PA)
Representative Gus Bilirakis (R-FL)
Representative Adam Schiff (D-CA)

Current Cosponsors (Updated 3/8/16)

Senate Cosponsors

Sessions, Jefferson “Jeff” [R-AL] – (joined Nov 16, 2015)

Bennet, Michael [D-CO] – (joined Nov 18, 2015)

Cochran, Thad [R-MS] – (joined Jan 19, 2016)

Donnelly, Joe [D-IN] – (joined Feb 8, 2016)

Kirk, Mark [R-IL] – (joined Feb 11, 2016)

Baldwin, Tammy [D-WI] – (joined Mar 7, 2016)

House Cosponsors

Norton, Eleanor [D-DC0] – (joined Nov 5, 2015)

McGovern, James “Jim” [D-MA2] – (joined Nov 18, 2015)

Swalwell, Eric [D-CA15] – (joined Dec 2, 2015)

Blackburn, Marsha [R-TN7] – (joined Dec 11, 2015)

Bucshon, Larry [R-IN8] – (joined Dec 11, 2015)

Griffith, Morgan [R-VA9] – (joined Dec 17, 2015)

Loebsack, David [D-IA2] – (joined Dec 18, 2015)

Nolan, Richard [D-MN8] – (joined Dec 18, 2015)

Lance, Leonard [R-NJ7] – (joined Jan 8, 2016)

Walberg, Tim [R-MI7] – (joined Jan 8, 2016)

Guthrie, Brett [R-KY2] – (joined Feb 1, 2016)

Collins, Chris [R-NY27] – (joined Feb 2, 2016)

McMorris Rodgers, Cathy [R-WA5] – (joined Feb 2, 2016)

Bost, Mike [R-IL12] – (joined Feb 3, 2016)

Lewis, John [D-GA5] – (joined Feb 3, 2016)

Webster, Daniel [R-FL10] – (joined Feb 4, 2016)

Abraham, Ralph [R-LA5] – (joined Feb 9, 2016)

Grothman, Glenn [R-WI6] – (joined Feb 10, 2016)

Pocan, Mark [D-WI2] – (joined Feb 10, 2016)

Ellmers, Renee [R-NC2] – (joined Feb 12, 2016)

Ellison, Keith [D-MN5] – (joined Feb 24, 2016)

Hahn, Janice [D-CA44] – (joined Feb 24, 2016)

Brooks, Susan [R-IN5] – (joined Mar 2, 2016)

Fitzpatrick, Michael [R-PA8] – (joined Mar 21, 2016)

Sessions, Pete [R-TX32] – (joined Apr 13, 2016)

Connolly, Gerald [D-VA11] – (joined Jul 5, 2016)

Are your legislators on the list?

If not email them, today!!!

Here’s more information about the CHFRA:

Original Congenital Heart Futures Act

First passed into law in 2010, the bipartisan Congenital Heart Futures Act was groundbreaking legislation authorizing research and data collection specific to Congenital Heart Disease. This law called for expanded infrastructure to track the epidemiology of CHD at the CDC and increased lifelong CHD research at the NIH.

Since the enactment of the Congenital Heart Futures Act, Congress has appropriated $11 million to the CDC for these activities. The Congenital Heart Futures Act also urged the NHLBI to continue its use of its multi-centered congenital heart research network, the Pediatric Heart Network (PHN) that help guide the care of children and adults with CHD. Together, these efforts have improved our understanding of CHD across the lifespan, the age-specific prevalence, and factors associated with dropping out of appropriate specialty care.

We are excited that the reauthorization of this important law will allow the CDC and NIH to build upon existing programs and focus on successful activities addressing this public health need.

Key Aspect of the new Reauthorization Bill

The CHFRA continues these important activities and builds on them by:

Assessing the current research needs and projects related to CHD across the lifespan at the NIH.The bill directs the NIH to assess its current research into CHD so that we can have a better understanding of the state of biomedical research as it relates to CHD
Expanding research into CHD. The bill directs the CDC to plan, develop and implement a cohort study that would improve understanding of CHD across the lifespan. This will help us understand healthcare utilization, demographics, lead to evidence-based practices and guidelines for CHD.
Raising awareness of CHD through the lifespan. The bill allows for CDC to establish and implement awareness, outreach and education campaign directed at CHD across the lifespan. Those who have a CHD and their families need to understand their healthcare needs promote the need for pediatric, adolescent and adult individuals with CHD to seek and maintain lifelong, specialized care.

This comprehensive approach to CHD – the most prevalent birth defect – will address a necessary public health issue and lead to better quality of life and care for those with CHD.

Here is the complete text as introduced in the House on 11/5/15.

If you have any questions about this legislation, please contact our Director of Programs, Amy Basken, at abasken@conqueringchd.org.

If you are interested in becoming an advocate for this important issue, visit the advocacy section of our website which contains information about signing-up, as well as tools to help you be an amazing advocate.

Also, consider bringing your voice to Washington D.C. as we advocate for this legislation in February!

Together, we will CONQUER CHD!

“I am Conquering CHD” Fundraising Campaign

Posted by Amy Basken on July 21, 2015

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.

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

Posted by Amy Basken on July 21, 2015

PCHA 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.

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:

Choose the “right” activity.Consider your abilities keeping in mind size, interest, talents, goals and time.
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.
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.
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.
Consider forming a committee. The larger the event, the more help you may want to recruit.
Identify your audience. Consider who is most likely to participate and support in the type of activity you have selected.
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.
Develop a timeline. This is an important strategy to make sure that all necessary steps are completed in advance of the activity.
Promote your activity. Share your efforts via social media, allowing you to connect with others and build momentum for your activity.
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 18^th 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.

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

Supporting Development in Children with CHD

Posted by Amy Basken on May 21, 2015

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

Photo Courtesy of T. Rainey

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

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

Here is an image of the included diagram:

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

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

Charting our future together: NHLBI’s Strategic Visioning Process

Posted by Amy Basken on May 5, 2015

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

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

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

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

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

Volunteer Opportunities

Posted by Amy Basken on March 2, 2015

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:

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

Collaboration for Change

Posted by Amy Basken on January 26, 2015

The American College of Cardiology recently hosted a Summit for providers in leadership positions to share information to improve their practice. PCHA was privileged to join Sisters By Heart in the opportunity to help educate these same amazing providers about building stronger relationships with their patients and parents through transparency and empathy. We experienced an incredibly positive response to the patient education tool we are developing called “Suggested Questions.” This tool, being designed collaboratively with patients and doctors, not only will empower patients by providing them with questions to ask their medical team that they may never have thought of, but in turn is educating the doctors about what parents need to know about the journey they are on. This tool is still in draft stage and will be available for public comment in the next few weeks!