Today we’d like to introduce you to Anna Lonon
Hi Anna, thanks for sharing your story with us. To start, maybe you can tell our readers some of your backstory.
The Lonon Foundation began when our founder, Anna Lonon, found out first-hand the impact that losing a parent to cancer could have on young children. When her husband Michael (“Mike”) was lost to an aggressive form of head and neck cancer at the young age of 32, Anna had a four-year-old son and a three-month-old daughter. During Mike’s treatment, Anna found there were few or no publicly-available resources to support family members of a cancer patient emotionally and psychologically. She also saw the overwhelming impact that Michael’s illness and death had on their son Jack, who needed a way to understand, process, and cope with his father’s cancer treatment and untimely death.
As a result, Anna Lonon founded the Lonon Foundation in 2016 to provide resources to children and adolescents in Charleston and the Lowcountry who are impacted by a parent or caregiver’s cancer diagnosis, treatment, and/or death.
Can you talk to us a bit about the challenges and lessons you’ve learned along the way. Looking back would you say it’s been easy or smooth in retrospect?
There have been challenges since the beginning but these challenges always lead to great opportunities. One of the struggles has been finding the community that we serve. We know the rates of cancer in young adults is higher and higher, and thus there are more children than ever living with a parent with cancer. In fact, it is estimated that 2.85 million children nationwide live with a parent in cancer, and that does not even include those children who have lost a parent with cancer. But finding those children, reaching those families has not been a simple process. At first, it was by word of mouth and social media. Finally, we decided to create a resource that hospitals and cancer clinics could use when first learning if a patient has children. This resource–our Family Resource Kit–provides psychoeducational support on how to talk to children about a cancer diagnosis as well as typical stress responses of children based on developmental age. These kits are a talking point for practitioners to talk to their patients about the needs of their children while also introducing them to The Lonon Foundation and the different programming we can provide.
Another major struggle that continues is finding funding. Grants are very time consuming, difficult to write, overly competitive, and, often, yield small results (at least for small nonprofits like mine). Getting donations from individuals and from businesses is often the better way, but it takes a all-hands approach from a board and an ability to hear “no” over and over. This has been so tough. Naturally, I don’t like asking for help, so starting a nonprofit that is funded by asking for money is not my comfort zone. Every email I write, every discussion I have with funders is wrought with anxiety. But, I know that ultimately our mission is important and universal and without the funds and the donors, we cannot do it. So, for our children we support, we get into our discomfort zone and ask for money.
We’ve been impressed with The Lonon Foundation, but for folks who might not be as familiar, what can you share with them about what you do and what sets you apart from others?
The Lonon Foundation provides resources for children in Berkeley, Charleston, and Dorchester counties who have a parent or caregiver with a cancer diagnosis or who have lost a parent or caregiver from cancer. Additionally, in partnership with MUSC, The Lonon Foundation also provides virtual UPLIFT programming support to families in Colleton, Horry, Orangeburg, and Lexington counties, and we continue to expand. At The Lonon Foundation, we understand that a cancer diagnosis impacts an entire family. Children who have a parent or caregiver with cancer often experience increased anxiety, stress, and feelings of loneliness. Through our free resources we promote coping and resilience, helping children find comfort, heal, and grow from their shared experiences.
Most people in the U.S. have lost a loved one to cancer or know someone who has, and treatment is a prolonged and painful experience both for cancer patients and their families. Children with parents or family members who are undergoing cancer treatment, hospitalization, and/or cancer-related death are particularly vulnerable to the traumatic impact of these events because children are still developing emotionally and typically have difficulties coping with death and other challenging situations. While some programs and resources for ill children exist (e.g Camp Happy Days), almost no programs support the children, spouses, and family members of cancer patients and victims either in the Charleston area or nationally. Furthermore, financial and medical data on the Charleston and our state area suggest that access to professional therapeutic support is limited for the target population. To fill this need, The Lonon Foundation invites children and families to participate in positive psychosocial experiences, founded in play-based, trauma-informed practices that mitigate the traumatic emotional impact of parental cancer. Our main program, UPLIFT, creates free in-person and virtual opportunities that promote coping and resiliency through a play-based, trauma-informed approach so that children can engage with their peers as they cope with the impact of familial cancer treatment and/or death. By providing opportunities for play and creative expression, UPLIFT enables children and adolescents to develop healthy coping skills, normalize the challenging experiences they are dealing with, and reduce their levels of stress and distress.
Research is somewhat limited in evaluating the psychosocial needs of children experiencing parental cancer. But findings have found that providing developmentally appropriate language to talk about cancer, activities to promote emotional expression, and strategies to assist in developing positive coping skills as well as access to a child life advocate is important to a child or teen’s mental well-being during a parent’s cancer diagnosis.
We are one of the few local or regional organizations that provides evidence-backed programming to mitigate the stress and trauma of parental cancer. Our UPLIFT program uses a family-oriented, child-centered approach that provides children and families opportunities to promote coping and resilience through play and creative expression, all of which is backed by research and evidence. Led by a Child Life Specialist, a person trained in age-appropriate communication and play-based strategies for positive psychological outcomes, the curriculum works to empower these children through coping and resilience to overcome the emotional distress of having a parent with cancer.
Furthermore, to address the barriers to access in-person UPLIFT events based on lack of transportation, parental illness, distance, etc, we created virtual UPLIFT events that bring UPLIFT to the home. The Medical University of South Carolina is a regional cancer center. As such, many of the patients travel from all over South Carolina to receive treatments for their cancer diagnosis. Because of our partnership with MUSC, we found that many families want to have access to UPLIFT but are unable to attend the monthly in-person events because of distance or cost of travel. Our virtual program ensures that families throughout the state can benefit from our UPLIFT program.
We are also the only organization to provide child life services at no cost to families impacted by parental cancer locally or regionally. To address the underlying social determinants of health such as poverty, unequal access to health care, lack of education, stigma, and racism, we provide access to a Child Life Specialist who is educated on how to provide support and resources that will support the psychosocial needs of the children that we help. Our CLSs meet with our families one-on-one to provide coping strategies, family support, therapeutic play opportunities, and psychological preparedness to families. Unfortunately, there is a lack of available CLSs in typical cancer center settings due to lack of staffing. However, at The Lonon Foundation, this service is provided to all families. According to research from MUSC, there are currently no Child Life Specialists for children of adult patients at MUSC or its affiliate hospitals, and yet there are at least 40% of adult consults that have children or grandchildren that would benefit from Child Life services. This does not consider the other cancer clinics in the area and state, who also do not have this service. In addition to coping and resilience support, the Child Life Specialist also helps find additional resources for families in need. For example, to address food scarcity, our CLS has found a local nonprofit to help provide weekly meals to a single parent household with cancer. For the holidays, the CLS also served as a liaison between our organization and The Salvation Army so that families in need were able to get support for their holiday gifts.
Finally, to address a barrier to food, income, costs for housing and monthly bills, we provide financial grants to families enrolled in our UPLIFT Program. In a large study led by the American Cancer Society, researchers found an increased likelihood in food insecurity, financial concerns related to housing and monthly bills, and transportation barriers to medical care for children in families dealing with parental cancer in the U.S. In this study, researchers found that of the children of cancer survivors, 25.8% had a shortage in basic needs like food, 16.8% could not afford balanced meals, 44.7% were worried about paying monthly bills, and 35.5% were worried about housing costs. Furthermore, 3.6% of children with parental cancer were more likely to get delayed medical care due to a lack of transportation (Zheng 2022). This study underscores the financial implications of a parental cancer diagnosis on the well-being of minor children and suggests a major need in economic support for these families. Our financial mini grants that have been awarded to date have helped pay for copays, prescriptions, insurance premiums, housing notes, winter coats, laptops for digital learning, transportation to other hospitals for a second opinion, baseball lessons, art therapy, and more.
What would you say have been one of the most important lessons you’ve learned?
We have learned how important it is to let the families lead us as far as their needs and how we individualize our services for them based on their feedback. Although they are all going through similar things, those experiences are all different and require individualized support. We are able to provide this individualized support through our Child Life Specialist, a child advocate who specializes in age-appropriate communication with children undergoing stressful life situations and/or illnesses.
We have discovered the need to evolve with our families and community partners. If we had remained rigid in our approach during Covid, for instance, and continued to only provide in-person events, we would have folded quickly. Being resilient and pivoting to a virtual approach in just a few weeks ensured we were not only able to continue to provide support but to also see other indirect needs of our families. For instance, it was through the virtual programming that we learned some of the financial needs of our families, many of whom were in 1 person household incomes and struggling with the financial burden that comes with a cancer diagnosis. This served as the catalyst for starting the mini grant program, which we still have today to provide financial support to families even though financial assistance was not in our original programming. This experience also showed us that families appreciated the flexibility and the accessibility of a virtual program, which we continue to offer, in addition to our in-person events, for families who are immunocompromised, have transportation issues, or live in other areas outside of Charleston. With virtual programming, there is no limit to who can join UPLIFT!
I’ve learned that passion only gets you so far. You can be passionate and have everyone in the room believing in you and your mission, but you still have to do all the other nonpassionate things to make your passion happen (ie. Quickbooks). I could advocate for the need for psychoeducation and social support for children of cancer patients all day…and I do. I believe in our programming, our curriculum, and the impact that we are making. In fact, I have seen it on my own children, who were impacted by their parent’s cancer. But, all this doesn’t matter if you don’t keep your books well or if you fail to collect data for a grant. So, there is a constant balance between the mission/the passion and the tedious work it takes to run, and grown, a success nonprofit.
Contact Info:
- Website: https://www.thelononfoundation.org
- Instagram: thelononfoundation
- Facebook: thelononfoundation
