Give CHD a Voice – #GivingTuesday 2015

 

Join millions of generous donors on what has become a national day of giving.

“Give a gift that matters.” By donating to PCHA today, you will help Give CHD a Voice.

Your gift will:​

– Build our Advocacy Network
– Train CHD advocates
– Educate our lawmakers
– Secure millions of dollars in CHD research funding

Give CHD A Voice, donate, today!

 

Give CHD A Voice 2

ACTION ALERT: Tell Congress to Support CHD

AA - Futures Act
Action Needed – 

Email your legislators: Co-Sponsor the Congenital Heart Futures Reauthorization Act

 

Email your lawmakers and ask them to co-sponsor the Congenital Heart Futures Reauthorization Act (S.2248/H.R.3952.)

  1. Visit your lawmaker’s website where you will find a “contact us” form.  You can find their website at www.house.gov or www.senate.gov.  If you are a veteran advocate, you may have direct contact information from previous activities.
  2. Using the suggested talking points and your own personal information, edit the letter below and paste it into the online form.
  3. Let us know you took action: Tell us on Facebook, send us an email or complete the I did it! form on our website.

Suggested Talking Points:

  • The Congenital Heart Futures Reauthorization Act directs the Centers for Disease Control and Prevention (CDC) and the National Institutes of Health (NIH) to continue vital congenital heart research and data collection activities..
  • The law was introduced November 5th by Senator Dick Durbin (D-IL), Senator Bob Casey (D-PA), Representative Gus Bilirakis (R-FL), Representative Adam Schiff (D-CA)
  • This legislation builds on existing programs 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.

Email template:

Dear Senator/Congressman [Fill in name here],

I am writing to ask you to co-sponsor S.2248/H.R.3952, Congenital Heart Futures Reauthorization Act.This important legislation builds on existing programming which will improve understanding of the most common birth defect across the lifespan.

1 in 100 babies are born with congenital heart disease (CHD), the leading cause of birth defect related infant death.  There is no cure for CHD. Those children who do survive face life-long, costly specialized care.

[Using 4-6 sentences, tell your story here and why research is important to you.]

There are more than 2 million children and adults in the United States living with congenital heart disease. CHD remains a serious public health burden and must be made a priority.

To Sponsor S.2248/H.R.3952, please contact ed_hynes@durbin.senate.gov in Sen. Durbin’s office or kristin.seum@mail.house.gov in Rep. Bilirakis’ office.

If you would like any additional information, please contact Scott Leezer at advocacy@conqueringchd.org.  

Thank you,

[Your Name, Your city/state]

To learn more about the PCHA advocacy program, visit our website.

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

2014-01-30 15.12.14Congenital 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!

Congenital Heart Legislative Conference 2016

LC 2016

Registration is now closed

but be sure to stay tuned for opportunities

to get involved from home!

 

The Adult Congenital Heart Association,

Children’s Heart Foundation,

and Pediatric Congenital Heart Association

invite you to attend

Congenital Heart Legislative Conference 2016

February 1-2, 2016

Liaison Capitol Hill Hotel, Washington D.C.

 

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

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

 

Important Deadlines:

  • November 30 – Early Bird Registration Ends
  • January 8 – Last day to register and receive hotel discount rates

 

Conference Agenda Overview:

Monday, February 1st
Congenital Heart Legislative Conference
9:00am – 10:30am Registration
10:30am – 11:30am – Advocate Training
11:30am -1:00pm – Lunch, Meet and Greet
1:00pm – 5:00pm – Advocate Training
6:00pm – 9:00pm – Reception

Tuesday, February 2th
Conference Conclusion and Hill Visits
6:45am – Buffet Breakfast
7:30am – 8:30am – Advocate Training
9:00am – 4:30pm – Hill Visits
5:00pm –7:00pm – Closing Reception

 

Travel and Lodging:

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

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

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

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

Deadline to secure your rate of $189/night is Friday, January 8, 2016; no exceptions.

*A limited number of scholarships will be available. For more information and how to apply, contact Danielle at dstephens@achaheart.org or Amy at abasken@conqueringchd.org.

Space will fill up fast, be sure to register, today!

Register

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.”

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

“I am Conquering CHD.” You can, too!!

1000 advocates

1000 advocates in 30 days.

We can do this!

Help us “Conquer CHD”

Click here to become a member of PCHA’s advocate network, today!

Why?

We need you.  Advocacy works.  It has increased federal research funding. It has helped expand CHD data collection to include people of all ages. It has raised the transparency discussion to a national policy level.  It has increased awareness of CHD in Washington D.C.  Advocacy works.

In order to have a bigger impact, we need everyone to come together with one voice!

Your experience with CHD is a powerful tool.  The key to success in bringing about change on a local or national level is to provide a personal connection to an issue. For this reason, through our grassroots efforts, PCHA is bringing the community together to share their stories and strengthen the voice of CHD.

Our advocates are the most effective resource for making changes on Capitol Hill, with government agencies, other national policy makers and even with-in their own hospitals.

Being a part of the Advocacy Network is easy.  Being part of something bigger makes a difference!

It’s Free!  You are under no obligation to do anything.

As an advocate you will benefit from:

  • regular communication to help you stay up to date on what is happening in the CHD policy world
  • access to resources to help empower you to share your story
  • alerts to when urgent action is needed
  • personalized opportunities depending on local and regional needs

By signing-up, you are joining a community of patients, parents, families, friends, nurses and doctors all committed to conquering CHD. Be a part of something bigger. And tell the world “I am Conquering CHD!”

Please sign-up today and use and share these badges to help us reach others.  Let the world know that you are doing your part – you are Conquering CHD!

.png files:

i am you can

 

 

i am

.jpg files:

i am you can

i am

Media Advocacy

“Advocacy groups have carved a niche for themselves in the broadcast industry’s policy-making apparatus by first defining key public interest issues and then by advocating ways by which broadcasters may address these issues.” – Museum of Broadcast Communications 

PCHA has seen the tremendous benefits of social media advocacy. In the first half of May two of our key volunteers and dedicated advocates shared their story with a local television station and created a buzz locally and nationally, reaching tens of thousands of people with the simple message that we must do more to conquer CHD.

You, too can share your story with the media, from the comfort of your own home!


Interview

Preparing your story

The first step in any type of advocacy is to prepare your story.  This is especially important in media advocacy because you are often recorded.  But you can do it!!  Check out our Telling Your Story resource to help you develop your story.  We are more than happy to review your story or help you practice.

The next step is to identify a few key talking points.  If you haven’t already, sign-up to receive our advocacy emails that can serve as guide to what we are currently working on in Congress.  You can also contact our office for an updated list of points tailored specifically to you.

Make sure you have an ASK!!  What is it you want the listener to do?  For example: Visit a website to learn more, attend an event, become an advocate, or donate.

Lastly, it is helpful to provide any internet links and statistics in written format to make sure they are correctly delivered through the media.  The PCHA Fact Page is regularly used for this purpose.

Connecting with your local media:


Television and Radio
Most television and radio stations have an email address to submit interesting stories.  You can submit your written story through this mechanism.  It is best to confirm that it was received with a follow-up phone call.  When you call, it can be helpful to ask to be directed to the health or human interest correspondent, as this person would be most likely to pick-up your story. Tying your submission with an upcoming event, activity or project will help, too.

Newspaper
A letter to the Editor or Op-Ed piece are great ways to initiate contact with your local newspaper and can lead to a lengthier story.  A letter to the editor can be created directly addressed to a lawmaker and have a call to action.  An opinion or editorial piece is shares information about CHD and can highlight any work a lawmaker has already done.  It helps to write this in conjunction with a medical professional who can provide technical expertise.

Social Media
You can also connect with media personalities or stations through Facebook and Twitter.  You can share your story on their page, or tweet a link to a resource like our fact sheet.

Tell us about it:
Be sure to let us know you participated in Media Advocacy.  We can follow-up with the media folks if needed.  We can also promote any features that result through social media and share with your lawmakers!

Charting our future together: NHLBI’s Strategic Visioning Process

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.govWe look forward to partnering with you as we collaboratively chart the exciting future of heart, lung, blood, and sleep research.