PCHA: At the Heart with Jess

PCHA was founded by everyday people, joining forces for change.Together, we make a greater impact on the CHD Community. During heart month, we’re highlighting our staff members to share how PCHA has impacted their CHD journey and what they think makes us special. Today, we’re getting personal with Jessica Chenevert, our Marketing Coordinator.

 

 

What do you love most about working for PCHA?
I love being a part of something that really makes a difference. I get to be a part of shaping the future landscape of CHD. I get to work with people that I admire and inspire me every day. Because of our shared experiences, our work culture isn’t like a typical 9-5 job. We’re a family.
What do you think makes PCHA different from other CHD organizations?
We are a one stop shop for all things CHD.
PCHA is the only CHD organization that provides invaluable resources, offers support to families throughout the lifespan, and advocates on a national level.

How does your experience with CHD help you relate to the families PCHA serves?
When I had my son Barrett, we didn’t know there was anything wrong with his heart. We felt so blindsided after a normal healthy pregnancy. It felt like I was thrown head first out of an airplane, spinning in a downward spiral, unable to catch my breath, and helpless to do anything but fall. I think that trauma is very real for so many CHD families out there, and the fact that PCHA is made up of families who have been where they are is crucial, in order for us to effectively fight for and support those families. We’ve slept in those hospital chairs, we’ve made those life or death decisions, we’ve struggled to pay the bills, we’ve lost our insurance coverage, we’ve celebrated every little victory, and we’ve been inspired by the families who came before us.
How did you discover and come to work for PCHA?
I found PCHA at my son’s bedside, while he was inpatient in 2014. Shortly there after, I saw they had a legislative conference in Washington D.C., where families are able to share their stories with congress. I initially disregarded it as something interesting but that I couldn’t do. Then, I saw it again, and again, until I said to my husband, “I think I want to do that, I think I can.” So I organized a T-shirt booster for “Team Barrett” shirts and raised enough money to pay my way to the 2015 conference. I got bit hard by the advocacy bug, fell in love with PCHA, and emailed Amy the following week to see what  I could do to be more involved. I volunteered for the next 3 years and eventually officially made it on staff.
How has your involvement in PCHA impacted your perspective on your journey with CHD?

I am constantly learning new things all the time. The opportunity to be involved in national conversations with other parents, patients, providers, and government officials has opened my eyes to what it really means for patients and families to walk this road, and it allows me to better serve them. It’s also opened my eyes to what it means for my family, as we continue down this lifelong path, from the neurodevelopmental consequences my son faces and the tools he needs to be successful in every aspect of his life, to transition into an independent adult responsible for his own care. 
As PCHA’s Marketing Coordinator, you’re on the front lines interacting with families every day. What is your favorite tagline PCHA uses and what makes it so meaningful?

My absolute favorite tagline we use is “Together, we are Conquering CHD!” It speaks volumes to me because you can interpret it however it to applies to you.
I am Conquering CHD every day as a patient or parent of a child with complex medical needs.
My child is Conquering CHD by continuing to grow, learn, and survive.
Our family and friends are Conquering CHD through their endless love and support for us.
Too many of my friends are Conquering CHD by simply waking up every day without the children they lost to this disease and carrying on their legacy and living their life for those children.
The dedicated and passionate CHD providers are Conquering CHD through their love and commitment to their work and CHD families.
PCHA is Conquering CHD through education, support, research, and awareness.
Together, we are Conquering CHD!

If you won $20 million dollars in the lottery, what would you do with the money?
If I won the lottery I would be speechless for the first time in my entire life! Besides the practical stuff like paying off any debts and putting a portion into savings, I would do a couple of fun things! Firstly, I would donate to my favorite charity: PCHA! Second, I would donate to the Heart Clinic and the CVCC unit of Children’s Minnesota, where my son receives care. Then, I would love to take a vacation, travel around the globe with my husband and son, visiting as many places as we can. Nolan and I have both been to Australia (separately), we would love to go back together. I also want to visit Sweden, specifically the town where my great great great grandfather lived before journeying to America in 1885 to found Lutsen, Minnesota.

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PCHA: At the Heart with David

PCHA was founded by everyday people, joining forces for change.Together, we make a greater impact on the CHD Community. During heart month, we’re highlighting our staff members to share how PCHA has impacted their CHD journey and what they think makes us special. Today, we’re getting personal with David Kasnic, our Executive Director and Co-founder of PCHA.

 
What do you love most about working for PCHA?
Helping those people that are going through the same situations that we have been through. As patients, parents, and family members, we can share our own experiences and offer opportunities to educate, connect, and potentially advocate for those living with CHD. Also, the people I work with are the most passionate and dedicated people I have come across in my career. Our culture is amazing.
What do you think makes PCHA different from other CHD organizations?
As a grassroots organization, we have all experienced CHD in our personal lives. It’s not something we can go home and forget about for the night, we live it with our children, friends, family members and people we meet. We are doing this because we know we can make a positive impact on the lives of these CHD patients, parents and family members. It’s not just a job for us, it’s our reality. If we can’t show value or impact on a particular program, we won’t do it.
How does your experience with CHD help you relate to the families PCHA serves?
As stated above, it’s something we live with and have gone through. It gives us “membership” into a tribe of people that realize we understand and have gone from the dark places of CHD to hope and positivity. Telling someone you understand what they have gone through is one thing (i.e. empathy), but actually experiencing it for yourself is another. None of us chose CHD, but we are bound and determined to fight this disease for the sake of our children, friends, and family.
Five years ago, you saw a gap in advocacy for CHD and had an idea, and along with Amy, started PCHA. How does it feel to see how far that idea has come?
It’s pretty amazing to see the organization grow but, more importantly, to see how many others have joined us because they saw there was so much more to do too. We didn’t realize that we would need to grow into education and support as well. Our motto is that if there is a need, and no one is filling that need, we will look at filling it and executing it quickly. There are 40,000 new patients born into this world every year. We cannot wait to get these programs out there, so others can benefit from our experience and knowledge.
How do your experiences as a heart dad drive your decision making as an executive director of a CHD organization?

First of all, it’s not just about my child. If I only made decisions related to my daughter, I wouldn’t be doing this for the right reason. It’s about all those people out there living with CHD or those who are about to face CHD. Second, I feel like PCHA is a place where I can bring my passion for CHD (because of my daughter) and my business experience together for a very powerful organization that fights for everyone with CHD. All the people we have involved have a true passion for CHD and a need to give back.
How do you hope PCHA will impact Piper’s future? Do you hope to empower her to advocate for herself with regard to her care?
My hope is that Piper, or any other person living with CHD, can find the resources she needs in PCHA.  There is no cure for CHD, so it’s something she is going to live with the rest of her life. My job as a parent is to teach her to advocate for her health and to stay in care, with a qualified, congenital cardiologist. PCHA should be a place she turns to when looking for information about work place issues, pregnancy issues, insurance issues, etc.

What is your favorite genre of music and why?
My favorite is Metal. My favorite band is Metallica. It started when I was a kid, with buying my first Kiss album. I was around 9. I just love the driving beat and powerful music behind it.

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PCHA: At the Heart with Amy

PCHA was founded by everyday people, joining forces for change.Together, we make a greater impact on the CHD Community. During heart month, we’re highlighting our staff members to share how PCHA has impacted their CHD journey and what they think makes us special. Today, we’re getting personal with Amy Basken, our Director of Programs and Co-founder of PCHA.

 
What do you love most about working for PCHA?
That it is never “a job.” I feel like everything I do has meaning, and the people I work with help contribute to that meaning.
What do you think makes PCHA different from other CHD organizations?
PCHA has a unique culture that is evident in everything it does. I think it can be summed up with the word “Empowering.” Not only does PCHA develop tangible tools and resources but it also generates a palpable positive energy that inspires and motivates.
How does your experience with CHD help you relate to the families PCHA serves?
Sometimes I feel really guilty that my son is doing so well. But, having experienced time in the hospital with him, I vividly remember the families who had been there for months, and those that left the hospital without their child. While I’m no longer in the day-to-day throes of CHD, I try to tap into that empathy to keep me going. I try hard to stay connected with people in all stages of the journey so I can continue to learn about how the CHD community is constantly evolving. I’m always learning!
With so much to be done in the CHD world, how do you prioritize where to start?
At PCHA, we spend a lot of time listening. Listening to families and what their needs are, and to medical experts as to how we can take those needs and make a difference. We look at the whole landscape and see who else might be already working to address a need, and where we might provide the best impact. Still, there is always the struggle of wanting to do more. Every time you successfully open a door, you see so many new doors to open!
If it wasn’t for your journey and role at PCHA, could you see yourself as a nationally recognized speaker, national public policy contributor, and advocacy superstar?
No! I’m just a mom from a small town in Wisconsin. Although, I do like to talk a lot. It is a real privilege to celebrate the work of PCHA as others see our real value, giving us opportunities to have a seat at the table, or time at the podium, to reflect and represent the patients and parents that are the life-blood of PCHA, and deserve to be at the center of these game changing conversations.
You and PCHA were instrumental in the passage of the Congenital Heart Futures Reauthorization Act that awards $50 million dollars to CHD research over the next 5 years, how does it feel knowing you’ve helped change the landscape of CHD for patients and families for years to come?
This is certainly a collective win. Advocacy is all about building relationships and moving people to action. PCHA was founded on this principle and was an excellent vehicle to move this issue forward. I am so proud of all the people who worked together to share their story and inspire our federal policy makers to make game-changing decisions that will benefit the CHD community for generations.

What would people be surprised to know about you?
I loathe mayonnaise and mustard. All condiments, really. I’m more likely to starve than eat anything with obvious condiments.