You = Winning! The Importance of Advocacy

Throughout the month of October, PCHA is helping advocates meet with their legislators in district.  In this post, Tiffany takes a humorous look at why it is important to rise above the politics and meet with our legislators.  For more information about in-district meetings, visit our website or contact advocacy@conqueringchd.org.

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Although the polls may indicate the current recess on the Hill is a much needed respite for the general public, for advocates it is the perfect time to visit your legislators’ office.  Whether your elected official is involved in a re-election effort or not, call their district office to schedule an appointment to meet with them while they are in-district during the month of October.  If your elected official is being challenged in an election, call the campaign office of their opponent and schedule an appointment.

The visit(s) should be relatively painless as your mission is not to ask for money.  Your goal is simply to create or refresh their CHD awareness by telling your story and introducing, or re-introducing, the realities of congenital heart defects.  Your story, your voice and your visit help humanize the cause.  Many incumbents trying to retain their seat may be trying to change the public’s perception of their image by refreshing their vision and commitment to the needs of those they represent.  Many challengers of current House seats are looking for opportunities to better understand the needs of those they represent.  Either way it is a great time for a visit, your story and CHD awareness.

But before you go, a quick Q & A that you may find helpful!

Q: Ugh!  I can’t stand my representative.  I will never, ever, ever vote for them so why should I visit them?

A:  Trust me, I can relate…oh, how well I can relate!  BUT, I try to keep in mind that my representative was elected to represent me.  Telling my story and sharing the realities creates the opportunity for them to truly represent me, represent my child, and represent my family.  Whether or not they use the opportunity to represent me better as a constituent is up to them.  And whether or not they use the opportunity may never have an impact on my opinion of them or my vote.  But creating the opportunity will give me a chance to get a better ROI on my tax dollars that constitute their salary!

Q: Do you know what my representative said about (insert any issue here) or voted regarding (insert any issue here)?  How can I even speak to them without spitting on their shoe?

A:  Again, I can truly relate!  It may take an enormous amount of self-control to keep my voice loathing-free but I know I will move mountains for my son and those like him who are affected by CHD.  When I meet with my representative, I use my story to try to appeal to their emotional side as a fellow parent.  I use the realities to appeal to their intellectual side as a representative of my district and one who has some aspect to funding needs I want to discuss on a subsequent visit.    Bottom line, when I walk into their office I am my son’s mom.  My goal is to get their attention and gain their support for the needs of my son, the needs of CHD.  I understand that we may never agree on other issues in our country or world but if I can get them to support or agree on the needs of CHD, I can work with that.

Q: Why worry about my representative if they are likely to lose or why work with the challenger if they are unlikely to win?

A:  Because you just never know!  You don’t necessarily know who will win or who will lose.  You will win either way if you cover your bases with both the challenger and the incumbent.  You win because you began a potential relationship with the winning representative.  You win because the candidate who didn’t win may be able to be an ally in the fight or a great source for contacts who will be.  You win because both have heard your story and a little more awareness was created in the process.  You win because successful and unsuccessful candidates generally maintain some sort of a political voice that you may be able to use.  You win because there is a good chance it won’t be the last election run for either one.

So to you summarize: You = Winning!

For more information about in-district meetings, visit our website or contact advocacy@conqueringchd.org.

Tiffany headshot  Tiffany Mytty-Kline has been a tireless advocate for the congenital heart community.  She has worked to unite others in peer-to-peer support, raising awareness and both local and federal advocacy.  As the mother of two boys, the oldest of whom has a complex congenital heart defect, she knows the incredible impact CHD can have on a family.  When she is not advocating for her son or the CHD community, Tiffany is an adjunct teacher and the director of employee relations for a midwest truck dealership.

In-District Visits

Email advocacy@conqueringchd.org today, to let us know YOU want to participate in in district visits!

 

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There has been a lot of talk in the media, lately, about raising money for research.  It certainly sends a very powerful message when millions of people come together to raise research funds for a cause.

We need you to send a message to Congress about Congenital Heart Defect research funding.

The Federal Government is the largest funding source for CHD research:

  • The National Institutes of Health supports 10’s of millions of dollars, including supporting the Pediatric Heart Network for research.
  • The Centers for Disease Control and Prevention currently have $2.9 Million allocated for CHD data collection
  • The Department of Defense has $200M in research funding that CHD research projects can apply for.

But, this pales in comparison to what it could be.

We challenge you, not to dump ice on your head, but to take a moment and meet with your legislators at their home offices while they are home, working in district, during the month of October.

Participating is simple:

First, email advocacy@conqueringchd.org to let us know you want to participate in an in-district meeting and we will walk you through the process, answering any questions you may have along the way.

Then, check out these great online resources that can help.  You’ll find tools to help you prepare for your visit, create personal cards to leave behind and printable materials to share with your legislators.

If you are not quite sure you are up for the challenge, feel free to email advocacy@conqueringchd.org for more information.

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Take Action to support Newborn Screening

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PCHA supports the screening of newborns for critical congenital heart defects. This legislation indirectly supports CCHD screening oversight efforts.  

From our friends at the March of Dimes:

We’re at a critical point where YOUR voice can make a real difference! The House passed the Newborn Screening Saves Lives Reauthorization Act (H.R. 1281) in June; however, the Senate failed to take action on final passage of the bill before adjourning for the month of August. Please contact your Senators and tell them to take swift action to pass this important legislation when Congress returns in September. There aren’t many days left for the Senate to take action.

Tell your Senators to pass the Newborn Screening Saves Lives Reauthorization Act.

The Newborn Screening Saves Lives Reauthorization Act will renew federal programs that provide support and guidance for state efforts to ensure that every newborn is tested for at least 31 conditions present at birth which, if undetected and untreated, can lead to serious disability or death.  Please make your voice heard on behalf of babies – they are counting on you!

P.S. Mark your calendars! September 8th will be a National Newborn Screening Saves Lives Call-in Day if the Senate hasn’t passed the bill.

Taking action is easy:

1) Find your Senators at Senate.gov

2) Call the DC office number listed or complete the online email form:

Simply tell them to “Pass the Newborn Screening Saves Lives Reauthorization Act”

3) If you take action, please Tell Us About It!

 

Save the Date – Legislative Conference 2015

PCHA is proud to bring you:

Congenital Heart Legislative Conference 2015
February 25-26, 2015
Hyatt Regency Hotel Washington D.C.

We are looking forward to collaborating with other congenital heart organizations to provide you with:

  • Up-to-date policy information and how it impacts children and adults with heart defects
  • Leadership training to develop skills needed to share your story and make a difference
  • A day on Capitol Hill meeting with your legislators

Mark your calendars – if you have ever attended CHD Lobby Day before, you won’t want to miss this!

Further details will be available as we prepare to open registration in December.

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

 

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

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

50 States, 50 Stories Campaign

50 Stories 50 States

6/23/14 Update:  We now have ONLY 9 STATES LEFT!!!

We are still seeking stories from: Delaware, Hawaii, Maine, Montana, Nevada, Oregon, Utah, Vermont and Wyoming.

 

50 Stories 50 States

Share your story, now!
The Challenge is on!!

We are uniting our voices to fight for more data, more research and better transparency of quality information in order to Conquer Congenital Heart Disease.

The goal: to send every single Senator a personal story about CHD, along with information highlighting our serious concerns about data, research and quality.

In order to do this, we have launched the 50 States, 50 Stories Campaign. By August 1st, we need stories from all 50 states.  More than one story from a state?  No problem, we’ll use them all in one way or another!

Share your story, now!

We need you:

You’ve told your story to friends and family.  Perhaps you’ve even told your story on FB.  It can be very intimidating to share your story on a larger platform.  But, think of the huge difference it will make. Share your story on our website: Simply click here! We will do the rest.  We will contact you to let you know that we got your story and talk about different ways we can use the story.  We will edit the story and send it along to your lawmakers.  You will have input every step of the way. Add as much or as little identifying information as you would like.  Some people like to use their first and last name, others just a first name.  Some like to include pictures, others do not.  Do whatever you feel most comfortable with.

Share your story and make a difference today!!

Advocates in Action

We recently sent out an Action Alert, asking you, our incredible advocates, to contact your legislators to request increased research funding.

Many of you sprung into action.  Here are a few cute snip-its:

1) Say Cheese!

Atkinson girls with DeLauro's Office

Mirabel, her twin sister and her mom, stopped by Capital Hill to visit Congresswoman DeLauro’s amazing staff person, Eric Anthony.  Thanks Meredith!

2) Did I just hear you correctly?

Another rockstar advocate from Arkansas was simply trying to get an email address.

Melissa: (talking to receptionist in Sen Mark Pryor’s DC Office) Does the Health Care LA prefer mailed correspondence or email?
Staffer: Email — it’s much quicker and he can respond to you.
Melissa: May I have his email address, please?
Staffer: No — we don’t give those out.

Thankfully, Melissa knew the solution.  She simply asked for the correct spelling of the first and last name for the Health Care LA, to insert into the standardized email format (first_last@senator’slastname.senate.gov)  Thanks Melissa!

It’s not too late to join in on the fun!  For instructions and a sample template to email your legislators using their online form, click here.  If you are feeling more adventuresome, email advocacy@conqueringchd.org and we can talk about how to send an email with an attachment, like Melissa, or how to visit your local or D.C. legislative office, like Meredith.

Action Alert – Support Congenital Heart Disease Research Funding

Email your legislators:

FUNDING CDC DATA COLLECTION

 

Action Needed

Email your lawmakers and ask them to provide $7M to fund CDC surveillance efforts.

  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
  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 and complete the I did it! form on our website.

Suggested Talking Points:

  • CDC funding has already been authorized to help better understand the congenital heart disease population
  • Currently, $2.9M has been appropriated, and CDC is funding 3 pilot adolescent and adult surveillance projects.
  • Additional funding is needed to continue and expand these efforts across the life span, including pediatric populations.

Email template:

Dear Senator/Congressman [Fill in name here],

I am writing to ask you to include $7M in funding for the Centers for Disease Control and Prevention to adequately support congenital heart defect surveillance across the lifespan, in your FY2015 request.

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

As the most common birth defect, resulting in costly life-long care, congenital heart disease remains a serious public health burden and must be made a priority.

If you would like any additional information or sample report language, please contact advocacy@conqueringchd.org.  

Thank you,

[Your Name, Your city/state]

To learn more about the PCHA advocacy program, watch this video, or visit our website.

Webinar: Awareness, Knowledge, Action – Congenital Heart Disease Advocacy

Awareness, Knowledge, Action:

Why you should care about advocacy, and what you can do!

Watch the Webinar today!!!

This introductory look into advocacy provides quick and easy ways to get started.

We are encouraging everyone to learn how to get involved and be a part of something bigger!

By watching this video, you will:
  • Learn why it is important to move beyond awareness to knowledge and advocacy.
  • Get up to date information about PCHA’s advocacy priorities
  • Learn about our Share your Story and 1 Voice/40,000 Strong Campaigns
  • Find out more about how you can get involved and make a difference.

5 Myths About Telling Your Story

Your story can be a very useful tool when working with others to make a difference.

Move past the myths and share your story on our website!

1) No one wants to hear my personal story.

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What you tell your friends is one thing.  But, it’s different when you are telling your story to a person with the power to make a change. Whether it’s a lawmaker, a physician, researcher, or insurer, they need to hear your story.  You see, all the numbers in the world are not nearly as powerful as your personal story, your experience.

2) You have to be a social person to tell your story.

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There are lots of ways to tell your story that don’t even involve talking!  Start by getting your story in writing.

There is no one exact way to do it. After nine years of rewriting my story, I now have a short version, a long version, a funny version, and tucked inside for special occasions, I have that very emotional version that still takes my breath away.

Once you have your story down on paper – submit it to our website!  We are building a collection of stories to help inspire others and we look forward to adding yours.

3) Telling your story takes a lot of time.

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It might the first few times.  It took me several hours to get my thoughts on paper, several days until I was finally happy with it, and it has changed many times over the years.  Now, I can write it in a quick email or share it in a passing conversation.  I’ve even hammered out a 30 second version I can tell someone on the elevator!

4) You have to be a heart defect expert for anyone to listen.

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You are the expert – you, or someone you love, has been impacted by heart defects and you know more about your experience than anyone else.  You don’t need to know the medical details or the latest research.  It is your story that matters.

5) Telling your story doesn’t make a difference.

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Oh, yes, it does.  I have heard countless times how someone’s story has changed minds, tipped the scales, and moved mountains.  Mine has, and yours can, too. Try it and see what happens.

The Pediatric Congenital Heart Association firmly believes in the power of our stories and is committed to bringing them together to be the resounding voice of the CHD Community.

We are building a collection of stories that can be found on our website.  A few stories will be featured on our home page.  Others can be found using the links on our blog page. These stories can be used to inspire others to take action, too.  Be a part of something bigger – share your story today, because together, we will make a difference.

 Amy Basken – President, Pediatric Congenital Heart Association