FedHealthIT’s President, Susan Sharer, had the opportunity to speak with Jennie Lucca, CEO of The Children’s Inn at NIH, to find out more about this much-respected non-profit, including the impact of the current crisis and how industry can continue their support.

The Children’s Inn

The mission of The Children’s Inn at NIH is to provide a free and comfortable place like home for families of children and young adults with serious health issues whose best hope is participation in a clinical research trial at the National Institutes of Health (NIH). While we serve up to 60 families at The Inn, we are currently only serving about 20 families. These residents are among the most vulnerable and include children with life-threatening diseases like cancer, immune deficiencies, blood disorders and other rare diagnoses. Families staying at The Inn cannot stop treatment to return to the safety of their homes, which is why our current focus is on providing them with a safe and comfortable environment during this uncertain time.

One of our present challenges is providing the same programs and services with fewer staff members and without  our volunteer community. We greatly miss our volunteers who regularly provide meals and activities to keep our families entertained.

In addition to the crisis, families are managing the needs of their seriously ill children while they are far from home and now in isolation. Every day we do our best to keep spirits up and maintain a sense of community at The Inn. Of course, we have to do this in more creative ways while our families are currently practicing social distancing. Part of the magic of The Inn has always included the open support system that families are able to find here with one another. Volunteer-provided dinners, family activities, outings and the chance to bond over a shared meal is not possible now.

Supporting The Inn’s Patient Family

The Inn provides a ‘place like home’ for children and young adult patients (up to age 30) and their families, who are traveling to the NIH to participate in a clinical research study. Every year, we serve more than 1,500 families from all 50 states and 94 countries. We work closely with our NIH partners to help ensure we are best meeting those patients’ specific needs.

I cannot say enough about how the passion and dedication of NIH clinicians is unparalleled. Many of the children who come to the NIH have rare diseases, some still undiagnosed. They travel to the NIH to see a scientist who has made it their life’s work to study rare diseases and find a way to help them. We hear from families over and over that they are amazed at the level of care, safety and dedication of the research team. The clinicians see the children and young adults as partners in research, and they make sure families understand the treatment plan every step of the way. Questions are encouraged, and doctors take time for consultations. Researchers and families really get to know one another, and it is unlike anything most people experience in medical settings.

Our role in supporting that effort is to take care of the little things, such as food, lodging, education and fun, so parents can really focus on the most important thing, which is their child’s treatment. That’s why everything The Inn provides is free of charge for families. This is all possible only thanks to the generous support of caring individuals, corporations and foundations. It’s thanks to them that The Inn can make childhood possible and help lift the burden of illness on these families.

Some of our families are with us for a day, some for a few days and some may be with us for six months or more. We accommodate as many families as we can at The Inn, and when we are at capacity, we arrange for lodging at nearby hotels (these families are still able to join us for meals and all of our support programs).

The Team

The Inn is special because of the people who work and volunteer here, as well as the many generous supporters who truly care about our families and advancing medical research. It is truly about the people. Even on the hardest day, you are lifted by the passionate, smart people who are working at The Inn to make things better for our families. There is always an effort to do better, to do more and to understand what else we can do to support our families and NIH partners.

Fundraising That Supports The Inn

A large percent of our funding comes from our immediate corporate community and the Federal IT community, which is such an important group to us. They are loyal, staunch supporters who come through for The Inn’s children and families whenever needed – we truly couldn’t do what we do without them. The more supporters we have, the more we can do for the children and families we serve, and we are therefore always focused on broadening our base of supporters and engaging the wider community.

When The Inn opened in 1990, the majority of our residents participated in fundamental HIV and AIDS research. Since then, there have been many more discoveries that children at The Inn played crucial roles in, including in the field of mental health, cancer research, sickle cell treatments, cures for immune deficiencies, treatments for rare blood disorders and so much more. These advancements are only possible thanks to our generous supporters who want to change the odds for our families and generations of children to come.

June marks our 30th anniversary. The message that was handed to me five years ago when I took on the role of CEO was the importance of relationships and the value of our history. The success of The Inn in delivering on our mission depends on taking care of the people who care about us.

Cancellation of An Evening for Hope

Due to the COVID-19 outbreak, we decided to cancel our annual gala, which is The Children’s Inn’s largest fundraising event. The event brings in roughly $1 million annually to support The Inn’s mission and is our only gala to bring this wonderful and supportive community together.

Despite having to cancel, we received overwhelming encouragement from our supporters. Many of our sponsors decided to donate their event sponsorships, and others offered pro-bono services.

What Can Industry and Government Do?

As a non-profit, we need financial support but also need pro-bono support. We are always focused on the future and how we can do more for our families. For instance, we know that some of our software systems are outdated and may be holding us back a bit. This is one example of where industry may be able to step in with the skills and knowledge to help us move forward.

We also appreciate help with raising awareness of The Inn’s mission, which is so very important. We definitely appreciate anyone who can help spread the word about The Inn and our need for support.

These are certainly challenging times, and when this is over, we hope our industry supporters will still be behind us with the same fervor as before in supporting our events, dinners and the special activities that mean so much to our families. These are the things that make caring for a seriously ill child a lot easier. We ask you to help us build on our special mission and the relationships we rely upon. The children and families of The Inn need you.

About The Children’s Inn at NIH

The Children’s Inn at NIH is a residential “place like home’’ for families with children participating in leading-edge research studies at the National Institutes of Health (NIH) in Bethesda, Maryland. The NIH Clinical Center is the nation’s premier and world’s largest hospital dedicated solely to clinical research, which provides an opportunity for our residents to be partners in advancing medical discoveries and improving the health of people all over the world. While the NIH takes care of the child’s medical needs, The Inn tends to the child’s heart, soul and spirit.

Every year, The Inn provides free lodging and support to more than 1,500 children and their families from all across the United States and the world whose best hope is a clinical research study at the National Institutes of Health. To learn more, visit www.childrensinn.org, and to support The Inn, visit www.childrensinn.org/donate.

About Jennie Lucca, Chief Executive Officer

Jennie Lucca is a seasoned human service professional with more than 20 years of experience working in the nonprofit sector. She previously served as The Inn’s chief program and services officer, where she oversaw the daily management of resident services, family programs and facility operations. Jennie’s career began in Anchorage, Alaska, working for The Arc of Anchorage, an organization dedicated to serving individuals with disabilities. Since that time, her focus has primarily been on developing and managing family support programs in community and health care settings. She is passionate about supporting families during times of significant stress and has been acknowledged for her compassion, dedication and strategic leadership.

 

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