Mental Health – Beyond Survival, The Struggle with Anxiety and Depression

PCHA continues its series on Mental Health with a piece by nurse and PCHA -VA Board Member, Sydney Taylor. Here, Sydney discusses contributing factors and prevalence of Anxiety and Depression in patients and parents affected by Congenital Heart Disease. 

 

 

 

For the first time ever, there are more adults living with a congenital heart defect than children. This is all thanks to improved medical technology, amazing advancements, and increased knowledge and awareness in treating CHD. While this is certainly incredible news, there are new – and unanticipated – aspects of treating survivors that we must now focus on.

When the field of pediatric cardiology was born, the main goal was to keep patients alive. The beginning

of this delicate science was unfortunately wrought with struggles in patient survival rates. However, as time went on and improvements and advancements in the field were made, patients started living to reach adulthood. But still, the main focus was to simply get these patients to see age 18. On the whole, aspects of everyday life patients may struggle with were – and sometimes continue to be – unaddressed by providers simply due to a lack of research and knowledge.

One of the biggest (and most prevalent) concerns facing CHD survivors is anxiety and/ or depression. Frequent and lengthy hospitalizations, painful procedures, and traumatic surgeries in childhood often lead to profound psychosocial impacts on patients. These impacts can range from minor to life-altering. For example, I can always feel myself becoming anxious when I smell rubbing alcohol or “hospital smell.” I remember this anxiety from childhood, but it had typically been isolated to healthcare-related environments. However, it made the beginning of nursing school and working in the clinical setting very difficult. Other patients may avoid seeking medical attention due to this anxiety, turn to substance abuse to cope with depression, or experience any number of ineffective coping strategies due to a lack of recognition of their unique needs in the medical community.

In a particular study done in adults with CHD, researchers selected patients who appeared to be “well-adjusted”; that is, did not outwardly exhibit signs and symptoms of depression or anxiety. Despite their appearances, 36.4% were found to have a “diagnosable psychiatric disorder, with anxiety or depressive symptoms being prominent [1].” Another study revealed that 18.3% of adolescents (age 12-18) with a heart defect suffer from depressive symptoms, compared with 3.3% of the healthy control group. Additionally, 30% of the adolescent CHD patients displayed anxiety, compared to 10% of the healthy control group [2].

Patients are not the only ones to suffer psychological distress related to their heart defect and treatment experience. Parents of CHD patients are also at risk, and possibly experience greater distress than their children. In a recent study done by the American Heart Association, an estimated 25%-50% of parents experience symptoms of depression and/ or anxiety, “and 30% to 80% reported experiencing severe psychological distress [3].”

There are more factors at play in the development of depression and/ or anxiety in the CHD population than you might think. Patients with more complex defects seem to be at a higher risk of developing anxiety and depression, and interestingly, those who undergo more cardiac catheterizations than others [2]. It has also been theorized that separation from parents due to early life-saving interventions shortly after birth may contribute to psychosocial abnormalities. Other researchers have postulated that early exposure to traumatic events (such as open-heart surgery) contribute to the development of ineffective coping mechanisms later in life. Most intriguing is recent evidence suggesting higher rates of cerebral insult secondary to cardiac dysfunction in CHD patients: in one study, 24% of infants had abnormal brain scans prior to surgery, and a staggering 67% had abnormal brain scans after surgery [4]. Literature is even more scant regarding parental anxiety and depression, but older parents and unemployed parents seem to have a higher incidence of depression [4].

If you or a loved one are struggling with anxiety or depression, it is important to speak with a healthcare provider. Now that heart patients are surviving, we need help in thriving. Don’t be afraid to reach out to someone you trust. You are not alone, and you matter.

 

For an additional guide on symptoms, tips, and when to seek help, please visit PCHA’s Educational Resource on Mental Health. Although this guide addresses parents in particular, the guidance it provides can be applied to patients experiencing difficulty with andxiety, depression, and post traumatic stress, as well. 

 

 

References:

1. Bromberg, J.I., Beasley, P.J., D’Angelo, E.J., Landzberg, M., DeMaso DR. (2003). Depression and anxiety in adults with congenital heart disease: a pilot study. Heart Lung, 32(105–110).

2. Awaad, M. & Darahim, K.(2015). Depression and anxiety in adolescents with congenital heart disease. European Psychiatry, 30(1), 28-31. doi 10.1016/S0924-9338(15)31916-7.

3. Woolf-King, S.E., Anger, A., Arnold, E.A., Weiss, S. J., Teitel, D. (2017). Mental health among parents of children with critical congenital heart defects: A systematic review. Journal of the American Heart Association, 6(2). doi 10.1161/JAHA.116.004862.

4. Pauliks, L. B. (2013). Depression in adults with congenital heart disease-public health challenge in a rapidly expanding new patient population. World Journal of Cardiology, 5(6), 186-195. doi 10.4330/wjc.v5.i6.186.

 

 

 

Sydney Taylor is a congenital complete heart block survivor, registered nurse, and is the Adult CHD Board Director for PCHA-Virginia. She has required pacemaker therapy since she was 15 hours old. She enjoys coffee and a good book, hiking and kayaking in the beautiful Shenandoah Valley area, visiting national parks, and making friends with any and all dogs.

 

Patient Engagement Tools: Comprehensive Single Ventricle Roadmap

When a family learns their child will be born with a Single Ventricle CHD, they are thrust into a world of uncertainty. It is sure to be a daunting and overwhelming experience. The plan for care of these patients has not typically been clear. As outcomes have improved, providers have been able to imrove their plans of action. In PCHA’s first Patient Engagement Tools Series post, Michelle Steltzer, Nurse Practitioner from Lurie Children’s Chicago, shares their Single Ventricle Roadmap.

 

Patient Engagement Tools: Comprehensive Single Ventricle Roadmap

Congenital Heart Disease (CHD) impacts about 40,000 newborns a year in the United States. Single ventricle defects are a complex subgroup of CHD, affecting approximately 5 out of every 100,000 newborns. In addition to normal pediatric and adult primary care needs, these patients are impacted by frequent follow up, complex testing, screening, re-interventions, surgeries, consulting providers, and care throughout a lifetime. This care not only impacts the patients, but the entire family system, including siblings, parents, grandparents, and extended family. The Comprehensive Single Ventricle Roadmap is a novel idea stemming from the persistent questions families have brought forward trying to understand the process of single ventricle disease over time and its neurodevelopmental effects.

Speaking from my personal experience as a younger sibling of a single ventricle patient, this kind of guide has been desperately needed for many decades. The first “blue babies” were given options for a better quality of life, and as research and outcomes have improved, these patients are now living into adulthood. Since arriving at Lurie Children’s Hospital in 2016, I am pleased to see the transformation of the idea evolve so promptly into a formal patient engagement strategy (available in English and Spanish) under the guidance of our entire team. I am specifically incredibly grateful to Dr. Kiona Allen and Amelia Aiello who agreed with this vision, making it a reality for patients and families.

Fontan Roadmap

https://www.luriechildrens.org/en-us/care-services/specialties-services/heart-center/programs/single-ventricle-center-excellence/Pages/single-ventricle-roadmap.aspx

Guiding Families Through the Journey

Now that you have been introduced to the roadmap, imagine yourself learning about the diagnosis of single ventricle CHD prenatally. The typical excitement and thrill of learning you are on a road to being a parent of a healthy new baby is not the same joy for parents and families faced with an incurable single ventricle disease. The stops along that road and the topics you’ll discuss are critical, important, costly, and personal. The unknowns, outcomes, and trajectory of this road trip are overwhelming to comprehend. Emotions and fears are often high, breaking down the normal anticipatory excitement and joy.

The Comprehensive Single Ventricle Roadmap is not a pathway any parent eagerly seeks out; yet, it is essential to living life with single ventricle disease. It requires thoughtful planning in an already busy family life schedule to organize the daily care that must be performed seamlessly within the diagnosis and treatment of single ventricle disease. This population is only several decades old; thus, the unknowns within single ventricle care are many. Investigating the latest research outcomes is an essential part of the journey — this includes understanding and coping with the lack of care options. Medical science and care have often not evolved fast enough to benefit children with single ventricle disease. Discussions with families about the surgical and other milestones on the journey are not easy conversations. The unique framework of the roadmap provides a visual guide, allowing families a way to understand the disease process. It also allows for valuable transparent discussions about opportunities for positive coping, hope, and fostering resilience along individual family’s pathway.

The Roadmap is not a “cookie cutter” framework meant to fit every family’s story completely; no two patients (and families) will have the same journey. However, it helps families visualize and more fully understand what care throughout a lifetime looks like, and allows families to anticipate major milestones in a specific time span of a child’s life, such as the newborn surgery. Identifying this point in time allows for transitional discussions regarding navigation in and out of acute and chronic care. These conversations often raise questions about the acute issues currently present for the patient and allow opportunities to explain our other patient engagement tools. For more helpful tools follow: https://www.luriechildrens.org/en-us/care-services/specialties-services/heart-center/programs/single-ventricle-center-excellence/Pages/home-monitoring-program.aspx

Typical questions from families during the newborn surgery period include:

  1. How will I be able to care for my newborn after surgery?
  2. What is home surveillance monitoring and will I be able to breastfeed?
  3. What if I need to go to the ER or another health care provider?
  4. What does follow up look like in the HeArT clinic (High Acuity Transition Clinic) and the pre-Glenn visit?

Not all stop points are anticipated. A couple examples of unplanned cardiac triggers across a lifespan include a 12-month-old s/p Glenn with moderate to severe AV valve regurgitation failing to thrive on medical therapy. Because of the cardiac issues, this patient moves into the blue circle entitled additional procedures. This may include potential re-operation for valve concerns before the anticipated next surgery in the journey, the Fontan operation. A second example is a 15-year-old s/p Fontan with arrhythmias requiring placement of a pacemaker/AICD that moves into the additional procedures post-Fontan for arrhythmias not responsive to medical management. Lastly, a 40-year-old s/p Fontan with failing function requiring listing for transplant that moves into the additional procedures post-Fontan and in essence trades one disease state for another (single ventricle physiology for transplant).

Striving for Anticipatory Guidance and a Successful Transition to Adult Care

One goal of the roadmap is to provide cardiac anticipatory guidance for families on the normal developmental milestones in life (marked by schoolhouses and graduation caps) and indicates the need for continued cardiac neurodevelopmental screening. The roadmap creates a framework to discuss difficult topics, potential complications, disease trajectory, issues that develop because of single ventricle physiology, and new cardiac concerns. When new issues develop that require attention, we have open conversations with the family that outline goals, medical options, surgical palliation and outcome statistics. Included in the conversation is a diagnosis review utilizing images that are tailored to the child’s individual anatomy to explain the current anatomy and potential next phase of the child’s journey.

The second goal of the Comprehensive Single Ventricle Roadmap is to foster developmentally appropriate health-promoting behaviors as our patients transition to adulthood to enhance the longer term quality of life. In the early-late teen and adult years, decision-making shifts from primarily parent-driven to patient-driven. This can be challenging for all involved. The milestones on the roadmap visually guide patients and families along the valuable process of each child’s maturation, identifies opportunities for transition of care from parents to patients, and highlights ongoing surveillance monitoring of the many consequences of Fontan physiology to achieve the ideal outcome with the best quality of life. This process is individual for each patient and evolves over time. Success is achieved when coordinated, developmentally appropriate, and psychological supportive care creates patients that advocate for themselves in adulthood and maintain the most positive health promoting behaviors in lifeTo see more on developmental Milestones follow: https://www.luriechildrens.org/en-us/care-services/specialties-services/heart-center/programs/single-ventricle-center-excellence/Documents/developmental-milestones.pdf

Lurie Children’s Hospital has a creative way of facilitating this transition within the Single Ventricle Program. The pediatric single ventricle clinic overlaps monthly with the single ventricle adults being seen in the Adult Congenital Heart Disease (ACHD) program. This allows for collaboration, a slower transition, and a formal hand off of care over time instead of a more rigid fixed timeline. To learn more on our website, follow: https://www.luriechildrens.org/en-us/care-services/specialties-services/heart-center/programs/single-ventricle-center-excellence/Pages/index.aspx

 

 

Michelle Steltzer has 20 years of nursing experience in fields from oncology to pediatric cardiology. She received both her bachelor and master’s degrees in nursing from the Univeristy of Wisconsin-Madison.

Michelle had a critical role in the development of the first home surveillance monitoring program for pediatric cardiology patients way back in 1999. She then worked collaboratively with the Joint Council on Congenital Heart Disease Quality Initiative while employed in Boston. Michelle expanded feeding protocols within congenital heart disease to include breastfeeding.

In addition to having worked at Boston Children’s Hospital and Children’s Hospital of Wisconsin, Michelle now works as a pediatric nurse practitioner at Ann & Robert H. Lurie Children’s Hospital of Chicago. Growing up with a sibling with a CHD, Michelle learned by experience and by watching her mother just what services were lacking for CHD families.

 

Becoming a fundraiser for PCHA!

Want to help us Conquer CHD? Become an individual fundraiser to support critical programs at PCHA. It takes less than 5 minutes and is as easy as 1, 2, 3! 

1. Fill out the online sign up form  (45 seconds)

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The last step is to personalize your page.

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CLICK HERE to sign up and get started!

Passion and Progress: A Provider’s Perspective

In July, PCHA is highlighting the need for transparency. Our goal is to inform, educate, and empower patients and families to actively participate in data-driven shared-decision making. Julie Slicker, a member of the PCHA Medical Advisory Board and lead on the Guided Questions Tool, speaks about the importance of transparency from a provider’s perspective. 

“We didn’t know until after our child was born,” “How could we predict what to ask the doctors? We had to just blindly trust in their skills,” “We were so afraid that we felt paralyzed and we didn’t know how to ask the right questions.” These are the parental anxieties that we, as providers, hope to have the power to impact. And today, with the effort of PCHA and their new Guided Questions Tool (GQT), maybe we can. But first, a story.

I will never forget the first time I had the privilege of caring for a child with congenital heart disease (CHD). It was 10 years ago, and the honor I felt being able to care for that child’s nutritional needs has never left me. As a Registered Dietitian (RD), I have had the opportunity to meet with countless other families since then. That said, every provider has a memory of one child that pulls at their heart strings.

He was a tiny infant named Joe, with a family that had no idea they were having a child with CHD and whose unexpected rush to the hospital changed their life forever. Joe’s tiny little round head, his blue lips and fingers, the fear and anxiety his family had to face, the multiple hospital admissions and the surgical interventions he had to endure will remain with me forever. I have heard so many stories over the years that started out the same way: A time that is supposed to be filled with joy and excitement quickly turned to one of stress, anxiety, and a feeling of being overwhelmed and powerless. I wanted to help to heal Joe and take away the pain and worry of his parents. I wanted to make a difference.

Together with PCHA, I feel that we’ve discovered a way to make that difference. A Guided Questions Tool (GQT) was created to facilitate relationship building and transparency between patients, families and their providers when discussing surgical interventions for infants. This tool is designed to result in data driven answers that promote discussion, leading to the balance between accurate information and reassurance. The first phase of this effort included the development of a list of “Suggested Questions” that parents could ask their providers. Parents and medical providers joined efforts and vetted the questions to identify those that reflect quality of care and outcomes. The questions were sorted into categories to address center outcome data, hospital experience and long-term outcomes. The questions were further edited by a multi-disciplinary team of providers and parents to ensure that they would meet health literacy goals and result in a transparent discussion between parents and providers. From this effort, the first true iteration of the GQT was born.

The next step is to test the GQT’s efficacy in practice. We have gathered a multidisciplinary team comprised of four CHD centers from all over the country to validate this tool via surveys for both providers and parents. We plan to initiate this phase next month.

The mere existence of PCHA, and the GQT that they have helped develop, speaks volumes about where we have come from as a discipline practicing in CHD. A nurse scientist colleague of mine who has dedicated her life’s work to improving the quality of life and developmental outcomes of children with CHD once showed me an old tattered notebook that forever changed my perspective on CHD. In this notebook she showed me the meticulous handwriting of one dedicated surgeon’s log of procedures from the 1980’s. This notebook held a list of patients with Hypoplastic Left Heart Syndrome (HLHS), one of the most severe forms of CHD. Written in front of the first 12 names was a capital letter D, denoting the passing of every single one of those infants. The nurse scientist explained the struggles in the early years of the Norwood procedure. Twelve names. Twelve families. Twelve tiny little infants with so much hope … and ultimately twelve deaths due to complications from this poorly understood physiological nightmare. Then miraculously, after twelve failures, there was a name in the book that stood alone; there was not a letter D written next to it.  The thirteenth child lived. And is still living today. This story makes me remember why sometimes failure is a greater lesson than success. It is often said that it is much worse to never try at all than to suffer repeated failure. I cannot imagine the perseverance this cardiac team maintained as they pushed through so much devastating failure. However, it is due to those families and the trust they placed in the medical team that the surgeons learned what they needed to. Yes, these early families lost their infants and have experienced unimaginable pain, but I can only hope they gained solace in the fact that their infant’s death led to the life of thousands more. They changed the course of cardiac surgical history. Today our facility, Children’s Hospital of Wisconsin, proudly touts that greater than 90% of these patients survive surgery to go home with their families. In the 1980’s these babies did not make it through their first months of life, and today our expectation is that most will grow into adulthood.

So, keeping this story in mind, here we stand. We can now save the lives of thousands of individuals with CHD all over the country. Cardiac programs have been built surrounding the ideals of survival and excellent outcomes, but as far as most of us working with CHD families are concerned, it is still not enough. Survival rates are high, we have surpassed that hurdle, and now we are focusing on improving care even earlier, particularly, during the prenatal period. In order to help families navigate the difficult world of congenital heart disease, PCHA, along with other cardiac providers from across the country, have implemented the GQT for this exact reason. This tool elicits discussions among providers and families around transparency and quality of care at cardiac centers. Joe’s family, like countless others, experienced extreme stress, confusion, and anxiety. They had to blindly trust their local CHD program. Our goal with the GQT is to give families a guide to discuss important topics with their fetal cardiologists before their baby is even born. This tool offers a list of questions that inquire about outcomes at each cardiac center, as well as what parents can expect during their hospital stay. Additionally, the GQT prompts parents to ask about what the expected long term results are for their child’s particular lesion. The GQT also focuses on the type and number of procedures children may undergo, the survival rate for their diagnosis, and the type of training and experience that the providers have. This tool will empower parents to ask the right questions, and will prompt providers to anticipate these questions and become knowledgeable about the answers. Utilizing this tool will allow transparency to take place, trust to be built, and knowledge to be gained.

Providers and parents alike push aside their fears and try to maintain hope that each child with CHD will have a positive outcome and achieve the quality of life deserved. It is because of this passion that I believe the field has progressed so far in the last 30 years. As PCHA and four other sites across the country embark on this small initiative to test and validate the GQT, I cannot help but think about the particular surgeon and his team in that notebook, and how they truly changed the world of CHD forever. This tool may be a drop in the bucket in comparison, but we aim to continue raising the bar for families with CHD to help support and empower them as much as we can.

It is truly an honor and a privilege for all of us that work with CHD families to help change the world – one CHD family at a time.

Julie Slicker MS RD CSP CD CNSC with edits by Sydney Allen, MPH


Julie SlickerJulie Slicker is currently the Quality, Outcomes and Research Manager of the Herma Heart Center at Children’s Hospital of Milwaukee in the Division of Cardiology. Julie has been at Children’s Hospital of Wisconsin since June 2006. Pediatric nutrition for infants with complex congenital heart disease is Julie’s passion, and since 2006 she has dedicated her time to caring for the nutrition of this patient population. In conjunction with patient care, Julie’s research focuses on hypoplastic left heart syndrome (HLHS) and single ventricle physiology. She pursued her Master’s Degree at the Medical College of Wisconsin in Clinical Translational Science and graduated in 2013. She is currently pursuing a degree as a nurse practitioner in order to  continue her work in the cardiac ICU, caring for the patients she has come to cherish over her career thus far.

Blog photoSydney Allen is a Program Coordinator for the Herma Heart Center at the Children’s Hospital of Wisconsin, focusing on quality improvement initiatives. Many of her projects revolve around improving patient outcomes, patient satisfaction, quality of life, and optimizing clinical process flow. She obtained her Master’s in Public Health Nutrition in 2014 and when she’s not busy working on healthcare quality improvement, she enjoys recipe testing in her kitchen to find simple, delicious, and nutritious plant-based meals to share with her friends and family.

Press Alert: Announcing New Partnership with Rapid SOS

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RapidSOS Logo Transparent     PCHA-2C-V

 

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

 

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[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

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

Haven App

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.

Medical Information

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.

Click to sign-up and save

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

SurveyYour 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)

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!

“I am Conquering CHD” Fundraising Campaign

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

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

Fundraising Meme

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

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

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

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

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

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

 

PCHA Fundraising Toolkit

Toolkit graphicPCHA Fundraising Tool Kit

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

WELCOME!

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

IMPORTANCE OF FUNDRAISING

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

ABOUT THIS TOOLKIT

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

YOU ARE NOT ALONE!

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

LET THE PLANNING BEGIN!

The PCHA Fundraising Committee

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

 

Included in the Toolkit:

10 Tips to Get You Started

Frequently Asked Questions.

About CHD

About PCHA

About Fundraising

Fundraising Ideas

For Kids

At Work

For All

Materials and Marketing

Selecting the date and location

Promoting your activity

Fundraising Starter Kit

Thank your contributors

Share your success!

Dealing with Donations

Collecting Donations

Submitting donations

 

 

 

10 Tips to Get You Started:

 

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

 

 

 

Frequently Asked Questions

 

About CHD

 

What does CHD stand for?

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

 

How common is CHD?

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

 

How serious is CHD?

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

 

Is there a cure?

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

 

About PCHA

 

Who is PCHA?

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

 

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

 

Where is PCHA located?

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

 

What percentage of my gift goes directly to programs?

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

 

What are PCHA’s key programs?

Our activities are focused in three areas:

 

Education

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

Research

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

Advocacy

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

 

 

Is PCHA a religious or faith-based organization?

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

 

What is the best way I can help?

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

 

 

About Fundraising

 

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

 

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

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

 

Fundraising Ideas

For Kids

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

 

Change Makers

Purse Purge

Coin Collection

Donations for chores

Stands/Sales

Lemonade Stand

Brat/Corn/Food Stand

Car Wash

Bake Sale

Craft Sale

Concession Stand

Face-painting

PCHA T-shirts

Events

Read/Dance/Jump/Bike –a-thon

Talent show

Fashion Show

Birthday Gift Donation

 

 

 

At Work

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

 

Jeans/Dress Down Day

Ice Cream Social

Change Makers (see above)

“Swear” Jar

Awareness Day

 

 

For All

 

Night Out

% Give-back at area restaurants

Gathering

Lunch for Little Hearts

Tea for Tiny Hearts

Toast for Tiny Hearts

Leadership Dinner

 

Stands/Sales

Brat/Corn/Food Stand

Concession Stand

Car WashBook Sale

Art Sale

Garage Sale

Craft Sale

Bake Sale

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

Events

Run/WalkGolf/Bowling Tournament

Cook-off

Fashion Show

Ice Cream Social

Pancake Breakfast

 

Pledge Challenges

Virtual Run/Walk/Marathon*

24 Hour Fast*

Read/dance/jump/bike –a-thon*

 

*Personal Fundraising Pages are perfect for pledge challenges!

 

Materials and Marketing

Selecting the date and location

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

 

Promoting your activity

Social Media

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

 

Email

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

 

Your Personal Fundraising Page

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

 

From the Heart

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

 

Fundraising Starter Kit

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

 

Promotional Items:

5 PCHA promotional Cards

5 PCHA Strawberry Pens

5 I am Conquering CHD Buttons

25 Temporary Tattoos

Donation Envelope

 

Digital File:

PCHA LogosSample text

PCHA Program Summary

CHD Fact Sheet

Change Jar Printable file

Donation Slips

Donation Tracking Form

PCHA Stories

Network Privileges:

Fundraising Page Login

Access to Fundraising Network Facebook Group

 

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

 

 

 

Thank your contributors

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

Share your success!

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

 

 

Dealing with Donations

 

Collecting Donations

Change Jars

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

 

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

 

Donation Forms

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

 

Credit Card

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

 

Submitting donations

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

 

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

 

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

 

Thank you!

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

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