How can our community find more and better ways to offer support to children and their families in the throes of a medical crisis? One way is by working to destigmatize the financial and emotional challenges that accompany pediatric illness. This is the Me Fine Foundation staff’s seventh resolution for 2019.
Having a loved one experience a medical crisis can put a family in financial free fall. Often, it is not the medical treatment costs themselves that put individuals and families in such precarious situations. These ancillary costs — the expenses that accumulate while receiving said medical treatment — are often unanticipated. These are expenses not covered by insurance or other social safety nets.
You likely have heard Me Fine talk about such costs over the years: from paying daily parking rates to purchasing meals at the hospital, to avoid leaving your child to continuing to pay bills for living expenses in a home that you may not even being living in during your child’s treatment.
Over the course of 2019, Me Fine will share stories and data that show how illness and critical care are having a profound impact on the lives and futures of families within our communities. Additionally, we will offer examples of people and collaborators who are working to drive costs down,making it easier for families to avoid bankruptcy, eviction, foreclosure, and the countless other devastating consequences that can come about due to a life-threatening medical condition. The more we remain attuned? to the needs of our neighbors, co-workers, classmates, and friends, the more we can do to step up and alleviate burdens that may be keeping parents and caregivers from fully being with their child.
One of the reasons that the Me Fine Foundation has been so successful over the last 14 years is because people actively cared and showed up to serve. As Me Fine has grown, so has the need for the organization to regroup and re-evaluate what the future could look like if we are fulfilling our mission.
Our sixth resolution for 2019 is to share Me Fine’s vision for the future.
For the first time, board and staff members are working together to craft the transformational change we hope to see in our communities. This process began in January 2018 in partnership with consultants from Armstrong McGuire + Associates. On January 14, 2019, more than 20 of us gathered at the North Carolina Community Foundation to review the mission; establish organizational values and beliefs; set strategic priorities; and sketch out an initial vision.
As we put the final touches on the current iteration of a vision statement, we know that it is important for us as an organization to speak to that vision frequently. Our vision is the manifestation of the countless hours given by volunteers, dollars by donors and partners, and dedication of our professional staff. The words that came up during our discussion on January 14th around our vision included:
- Easing burdens
- Systems of support
Expect to hear more from us about this vision and how we will work towards achieving it throughout 2019 and beyond!
The fifth resolution of the Me Fine Foundation staff for 2019 is somewhat similar to our first resolution but with a slight twist. Me Fine’s mission is very deliberate and focused: We meet urgent needs through our financial assistance program so families can avoid additional life and financial disruptions. The emotional and psychosocial support programs that we sponsor in our partner hospitals offer longer-term interventions for coping and healing for each member of the family.
But, the challenges families navigating pediatric illness and medical crisis experience are much wider and greater than Me Fine can ever address. Fortunately there are other pediatric-centered organizations, such as the American Board of Pediatrics and even our three partner hospitals, that are working to eliminate and eradicate specific disruptions permanently.
Me Fine’s fifth resolution for 2019 is to highlight some of the bigger-picture thinking and actions other groups are taking, which will have positive impacts for the children and families we serve.
All of us in the Me Fine family can learn from and/or work with other nonprofit, public sector, and for-profit partners to develop ideas and implement long-term solutions. For instance, one potential suggestion is to recognize formally the role that childhood trauma plays in the long-term health and wellness of our communities, which could open the door for greater research, resources, and acceptance (read this NPR story here).
This is a resolution where we will want your help! When you hear of ground-breaking approaches to supporting families; when you read about simple interventions that could make it easier for parents and caregivers to be with their sick child, we would love for you to share it with us! You can send us an email at email@example.com.
Thus far in the Me Fine Foundation staff’s quest to set resolutions for the year ahead, we have committed to:
- Communicating about the underlying issues, such as housing and food insecurity, in our communities that create additional burdens for some of the families we serve;
- Identifying and developing partnerships with our peer nonprofit and community-based organizations who also help families navigating medical crisis and pediatric illness; and
- Creating and empowering our donors, volunteers, and supporters to spread Me Fine’s message through all the channels: offline, online, and those in-between.
Our fourth commitment of 2019 is to share more stories of those individuals, families, community groups, and businesses who give their time, talent, and resources to enable Me Fine to carry out its mission.
These generous supporters share our values and want to do whatever they can to provide hope to children and families. Twenty of these individuals compromise our Board of Directors. Dozens more support the organization by hosting thrift drives for new and gently-used items that our Second Hope Shop can sell; organizing and participating in our annual Christmas in July and Hope for the Holidays programs; and finding one-time opportunities to prepare craft supplies, pack items in our storage unit, or help out at one of our events.
Hundreds more — including schools; churches; foundations; small, local businesses; medium-size firms; and major corporations — give of their financial resources. The dollars donated fulfills Me Fine’s promise to children and families. Your contributions equip the organization with the resources to carry out our financial assistance and emotional support programs; to support the professional staff who dedicate their lives to all facets of Me Fine’s work; and to help share the testimonies of what pediatric illness and critical care get told to wider audiences.
Expect to see more of the faces and learn more of the stores behind all those who stand with Me Fine.
Despite their emotional upheaval, parents and caregivers graciously offer a glimpse into their family’s experiences as their child undergoes treatment at one of the Me Fine Foundation’s partner hospitals.
Sometimes, families share stories with many details. They explain what life was like before their child’s diagnosis, and what life looks like now. Sometimes, the stories that families share are shorter. They may give us permission to talk about their child’s diagnosis or identify their hometown. They may allow us to share their names or how Me Fine was able to help their family.
Regardless, all of these families kindly took precious time to reveal part of themselves and their experiences with pediatric illness. Each month, we will share one or more of these stories. We want to underscore the incredible gratitude and honor that we at Me Fine feel in being able to provide a platform for these families to share parts of their stories.
This month, we want to share two of the countless personal testimonies as to how children and families end up getting connected to Me Fine’s mission.
Retinoblastoma. This is a type of eye cancer that begins in the retina and typically affects children. A diagnosis of retinoblastoma is how one Me Fine family ended up at Duke Children’s Hospital, eventually being referred to the organization for hope and help with specific financial hardships. The good news: retinoblastoma is a highly treatable cancer. Per Duke Health, “[i]t is estimated that 95 percent of children diagnosed with retinoblastoma survive this condition.” Still, the regiment of treatment and travel take an emotional and monetary toll on the pediatric patient and the entire family.
Down Highway 15-501, Jenny J. found her son, Samuel J., admitted to UNC Children’s Hospital for persistent asthma. Her six-year-old experienced difficulty breathing for more than two weeks. This was Samuel’s fourth hospitalization. The family hails from Dunn, North Carolina. Jenny and her family traveled for nearly 90 minutes one-way, when traffic was “normal,” each time Samuel required medical intervention. Samuel’s social worker referred his family to Me Fine for assistance. The organization, because of our supporters, provided Jenny a $200 grocery giftcard in order to eliminate one more out-of-pocket expense weighing on the family.
Each time you give of your resources and time to the Me Fine Foundation, we encourage you to bring these family stories to mind. Your compassion makes a difference, as each one of these families bravely attested.
Ahead of an impending wintry mix, our staff wants to share our third resolution for the year ahead. If you have missed our first two, you can find them here and here. This third commitment is all about creating more opportunities for you.
The Me Fine Foundation can’t fulfill its mission without the involvement of community members. Whether as donors, volunteers, promoters, or partners, each of you play a role in helping to shine a bigger spotlight on the plight of families struck by pediatric illness.
In 2018, we stepped up our commitment to bringing greater attention to the gaps in financial assistance and emotional support resources through our friendraisers and reviving our blog. Yet, we’ve only scratched the surface of how this work and the stories of children and families get reverberated across our state and beyond.
This year, we commit to creating more ways for you to provide feedback and serve as a Me Fine ambassador. We will do this by better leveraging digital tools to give you insights into the organization; adding more informal in-person gatherings for connection and problem-solving; and establishing more formal ways for you to raise the necessary resources to meet our ongoing referrals for assistance.
These three pillars require a rock-solid foundation for any nonprofit organization to be successful. That foundation is made up of people like you: people who care; people who have taken their own personal journey through critical care or know someone who has.
Thank you for being a part of our Foundation. Hold us accountable for giving you ways to amplify how everyone can be a part of an extended Me Fine family!
Written by Joey Powell, executive director of the Me Fine Foundation
I really enjoy being around sharp people (read: “People smarter than me”), especially people who are at the forefront of their fields. There’s something really invigorating when over 5,000 humans’ worth of brainpower is in the same place. Thus, you can imagine the rush that carried me when I had the privilege to attend the 2018 Institute for Healthcare Improvement (IHI) National Forum last December.
Because of my involvement with the UNC School of Medicine’s IHQI Department and the UNC Children’s Hospital Patient and Family Advisory Board, I was afforded the opportunity to join some of the UNC team members t for the conference. The vast array of breakout sessions allowed me to create my own learning track for the week. I opted to map my track around the core concepts of Diversity/Equity and Leadership Through Change. (Both of these tenets have been really prevalent themes through Me Fine’s work as well, so two birds…one stone, and whatnot.)
Perhaps the most compelling aspect of the conference was the power of the Plenary/Keynote sessions. I realize that most of these events try to set the Keynotes as their pinnacle, but IHI really nailed this. In order, the lineup consisted of:
- Zubin “ZDoggMD” Damania, MD
- Derek Feeley and Jason Leitch (both Scotsmen in full kilts)
- Women In Action panel moderated by Maureen Bisognano and consisting of Vania Deonzio, Celine Gounder, and Mona Hanna-Attisha
- Father Gregory Boyle
- Donald M. Berwick, MD
Rather than try to rundown all of the amazing concepts and knowledge that I soaked in over the three days, I’ll share with you some of my major takeaways, hopefully in digestible form.
Social determinants influence about 80-90% of health outcomes in the real world. “Your zip code can affect your well-being more than your genetic code.” – Zubin Damania. Please do yourself a favor and check out some of his music videos. They’re only outdone in quality by how compelling they are. Check HERE.
ZDoggMD actually founded Turntable Health in Las Vegas, a health clinic focused on social determinants. The clinic had a flat fee with no copays for patients. It was widely successful until one of its major funders put more emphasis on dollars rather than human outcomes.
We (in healthcare) need to change the opening question to patients from, “What’s the matter,” to “What matters to you?” – Leitch
Current best practices in healthcare are created by a few (people), and aren’t diverse nor inclusive. Knowledge should not be power…SHARING (that knowledge) is power. – Feeley
Derek Feeley showed a photo of a patient in a hospital gown, using the gown as an example of a healthcare “best practice.. He showed the view of a patient in the gown with the patient’s derriere exposed and questioned from whose perspective it was deemed “best practice.”
Leitch shared a quote from President Barack Obama about how power can be shaped by inclusion. The premise was how implementing change can be much easier when there’s inclusive buy-in from the group of those affected by it. Independent of politics, it’s pretty prescient: “If you have a community that stands behind you, you’ll have more power. If you don’t, you won’t.”
“Don’t let external pressures shape delivery for a short term result: Stick to a constancy of purpose and coherence over time.” – Pedro Delgado
On the Women in Action panel, Mona Hanna-Attisha was absolutely amazing. You may know her as the pediatrician whose research led to the discovery of the Flint water crisis. Her approach to patient visits is holistic but so simple: she screens for ear infections, sure. But she also screens for safety, poverty, food insecurity, etc. Her story shows how hospital professionals can take a stand in a community to protect the patients they serve and live alongside.
Finally, Father Boyle was captivating. Upon seeing his name and knowing nothing about him, I was skeptical of hearing a priest open the final day: I anticipated a soft monotone delivery. Plus, what could a religious figure have to contribute about outcomes in health care? However, three minutes in, you can tell that he’s not only a major change agent in the Los Angeles gang culture, but an incredibly accomplished speaker. Check out his book “Tattoos on the Heart”, which I’m currently reading. There was also a documentary about Homeboy Industries and his work that you can watch on Amazon Prime called, “G-Dog.” I may or may not have gotten some water in my eyes, if I’m being honest.
I took away quite a few powerful perspectives and some personal challenges that I want to work with in the coming year. I’m definitely excited and hoping to attend next year.
Do you want to ask questions or hear more about the forum? Shoot me an email: jpowell@Mefinefoundation.org. Thanks for your support of Me Fine and our work!
As outlined in our first blog post, the Me Fine Foundation staff set nine resolutions for 2019. These resolutions stem from our mission of providing hope and support for children and families in the throes of pediatric illness and medical crisis at Duke, UNC, and WakeMed Children’s Hospitals. Our first resolution focused on a commitment to highlight specific social determinants, such as housing and transportation, that contribute to the physical and mental health of the children and families we serve.
Our second resolution is all about collaboration. In 2019, Me Fine will collaborate more intentionally and frequently with other nonprofit and community-based organizations. As you may already know, there are dozens of causes committed to serving families undergoing treatment for critical illnesses, or families who are experiencing medical crisis. In order to best serve these groups, we, as a nonprofit, need to understand our role as well as the role of other organizations, and be able to help connect the dots for families when possible to ensure they have access to the resources that best fits their circumstances.
You may have thought to yourself: “I wonder if the Me Fine Foundation partners with…” groups like the Ronald McDonald Houses, Be Loud! Sophie, Bridges Pointe Foundation, SECU Family House, Arts For Life, and other outstanding organizations whose missions and populations served are either similar or closely aligned to our own. The short answer is: sometimes, but not enough.
In the year ahead, we will be proactively building relationships with our fellow do-gooders to identify ways that we can elevate each other’s work and celebrate in mutual successes. This may also look like Me Fine encouraging you, our supporters, to also make financial gifts to these other organizations. At the end of the day, we know that donors to Me Fine have big hearts; we also know that many of you want to see nonprofits like ours working hand-in-hand with others to be more efficient and effective. Resources like time and money are too limited to be wasted by duplication. We also know that when we put our heads together, better solutions and ideas will come. It’s a win-win!
As we move forward in the months ahead, we look forward to sharing more with you about these collaborations and shining a spotlight on these other amazing nonprofits and community-based organizations that are committed to providing hope and help where it is needed most.
Missed our first resolution about about discussing the intersectionality of social issues with pediatric illness? Read it here.
A new year offers us an opportunity to dream big, set goals, and start the work of achieving them. At the Me Fine Foundation, we drafted nine resolutions for our organization in 2019. Thanks to our staff, Board of Directors, hospital partners, volunteers, corporate supporters, and donors, we’ve been able to address the urgent financial needs of families and provide the funding for emotional and psychosocial programs within the medical setting for thousands of pediatric patients, siblings, and caregivers. But, we know there’s more to do in order to truly meet the needs of children and families in medical crisis.
Between now and January 31, we’ll be revealing our nine resolutions for the year ahead. We invite you to join us on any and all of these commitments. You can share your own personal experiences, ask questions, and find ways to ensure these goals continue beyond this month.
Me Fine’s first resolution for 2019: we commit to communicating more about the intersectionality of pediatric illness and medical crisis with other systemic barriers experienced by countless families in our communities. This includes a lack of affordable housing and public transportation options; this also includes food insecurity and difficulties accessing childcare.
Why is Me Fine, a nonprofit focused on supporting critically ill children and families served by our partner hospitals, talking about these issues? Because we recognize that we have the responsibility of supporting families in a multitude of ways.
First, we provide assistance during the most extreme, urgent times. This aligns with our values that families come first, and parents/caregivers should be able to be with their ailing child as much as possible.
Second, we fund programs that equip pediatric patients, siblings, and parents with coping skills and relationships that support their emotional and social well-being far beyond their time of treatment and hospitalization. Trained social workers, psychologists, and Child Life specialists administer these opportunities.
Third, we see a new opportunity for us to shed light on underlying issues that tend to exacerbate further harm on families when pediatric illness and medical crisis occur. Over the last few years, hospitals, health insurance providers, and funders have brought much attention to these “social determinants” of health; specifically, these groups have shared evidence and research on how factors like housing, natural environment, transportation, and education impact physical and mental health and their outcomes. The research shows that until these challenges are remedied, too many people will continue to cycle through the healthcare system in ways that don’t ultimately address their specific needs and benefit the broader community.
This year, Me Fine wants to highlight these “social determinants” in the communities where families we support call home. Through no fault of their own, many individuals face seemingly insurmountable hurdles due to their zip code and other mitigating circumstances. Layering on a child’s critical or chronic medical condition tends to exacerbate an already precarious situation. For instance, in North Carolina’s rapidly-expanding urban centers such as Durham, there are few options available for truly affordable housing. Rising rent and mortgage costs may push families from their homes, forcing them to seek alternative housing with relatives or wait for nonprofit or public assistance programs. This waiting period is when families often find themselves living in cars or end up on the street; some may have to move further away from their child’s care center, thus adding even more strain on financial resources for gas, not to mention the emotional stress of being physically further away from your child.
The good news is that for many of these intersecting issues, local and state leaders are working with nonprofit and community-based organizations to identify solutions and create new systems. Until the root causes that lead to chronic poverty, underemployment, and hunger are addressed, there will continue to be children and families who must endure such outcomes on top of the already-difficult world of pediatric illness. We’re making a commitment in 2019 to talk more about and explore these varying issues, what’s being done, and how you can get involved.
Has it really been six years? I guess it has and what a six years it has been. The Me Fine Foundation has changed my perspective on life. Yes, that is a bold statement, but it truly has.
I came to Me Fine back in July 2012. At the time, the organization was in the beginning stages of a maturation process. One of the areas that required effort and formalization was Finance. Thus, given my background as a CPA, Tracy quickly pulled me into the fold to help support the organization on their newly formed Finance committee.
At the time, I really didn’t know much about Me Fine. However, I do recall vividly meeting the broader board and scratching my head at the level of talent and breadth of skill in the room. I wondered to myself: how did this organization recruit these outstanding individuals? After six years, I fully understand the answer to that question.
Me Fine is unique in its mission. We don’t serve just a child receiving care at Duke, UNC, or WakeMed Hospital. We serve their whole family. In a way, that is more emphatic and unmet than most people realize. It took me one Christmas in July to fully understand the power of the organization.
When you can touch, see, and feel the impact, it will take your breath away. It took mine away because I instantly tried to put myself into the shoes of the families I encountered and imagined what life would be like if our roles were reversed. Discovering your child has an incurable or disabling diagnosis is just the start of a terrible and difficult path. What these families endure over the course of time is unimaginable.
I remember being in the hospital with my son for a double ear infection where his temperature was 105 degrees and required a two night stay. Our family was spared in that instance, and we thought that was difficult. These families have not been spared. The toll of managing life outside of the hospital takes away from the emotional needs of their children. This is why I have dedicated the years and support I have to this great organization.
When my term is up here at the end of 2018, I will be leaving an organization that is strong and viable; it now has the foundation and structure to grow, thrive, and continue to address this critical need in our communitities.