By Charlena Wynn
Caring for a child with a chronic or terminal illness can be difficult and stressful; no one prepares you for the new obstacles you may face. For many parents, they lean on the nurses that work with their children daily and build relationships during their time in hospitals. These interpersonal connections are crucial to caring for sick children and their families. The energy and effort nurses give to patients and their families alleviate some of the stress and build solid foundations for trust.
Diane Gottheil is very familiar with the crucial role medical professionals play in patient care. When her son, Josh who battled with Lymphoma, received a bone marrow transplant at Barnes Hospital in St. Louis, the dedicated nurses were “caring and compassionate” says his mother. Nurses, according to Gottheil, do extremely difficult work and are often overlooked.
Although Josh passed away April 4th, 1989, his parents wanted to continue to remember not only their son but the nurses who cared for their family during their time at Barnes Hospital. Bone marrow transplantation is an invasive form of treatment which requires high doses of chemotherapy and radiation. In addition, highly skilled and specialized nurses are critical during recovery and the bone marrow transplant nurses who cared for Josh did so with “untiring attention and compassion.” In 1994, the Josh Gottheil Memorial Fund for Lymphoma Research was established to provide support to oncology nurses via the partnership with Oncology Nursing Society.
Josh’s Fund recognizes the need to support nurses as they are on the “frontlines of patient care.” While biomedical research is a multi-million dollar business, most funds are appropriated to institutions rather than individuals. The Gottheils recognized this and began to work with the Oncology Nursing Society (ONS) in Philadelphia on developing a Bone Marrow Transplant Career Development Award, in which each year four nurses receive the educational grant as selected by ONS. Eighty ONS nurses have received the award since the Fund’s beginnings. This direct form of giving is what carries out Josh’s Fund’s mission of supporting nurses through education and shapes how the organization continues to operate currently. Mrs. Gottheil is adamant about Josh’s Fund zero expenses budget as it allows them to continue to give and fight cancer in a meaningful way.
Of course, with a lack of salaried employees and grant writers, procuring money can be challenging. However, due to Josh’s infectious nature as a young music promoter and his father, Professor Gottheil’s relationship with the University of Illinois Champaign-Urbana, students, local bands and other community members have been helpful in raising funds to continue their mission. Students from 1994 to 2009 have tailgated at the University’s football games to raise funds, a local fraternity, Sigma Phi Epsilon has made Josh’s Fund its philanthropic cause with the Gottheil Cup, and the Music Festival Champaign-Urbana has been influential in advertising Josh’s Fund. Just as interpersonal relationships are important to care, they are essential to fundraising. Without it, many patients and their families would struggle to find a cure, and many nonprofits would be without a support network. “Don’t be afraid to be personal,” says Diane. Sharing your story, your goals, and why can be helpful in fundraising goals. “Be clear how it will benefit the community,” whether directly or indirectly can recognize people and their capacity. Because of this outlook, Josh’s Fund has always had enough funds to continue their mission.
Nurses can make a difference for patients, family, and friends, according to Mrs. Gottheil. The relationships and bonds that these practitioners create with families was the catalyst for Josh’s Fund and sparked the Gottheils’ passion for caring for nurses. Professional development for nurses is crucial to the well-being of us all, particularly those with terminal illness and chronic disease. Supporting nurses and other caregivers, volunteers, and aids is helpful in raising awareness and eliminating diseases, and allows for others to get involved with causes on the educational and research level. Recognizing the dedication and passion nurses have and supporting their educational goals is critical to furthering medical research.
The Josh Gottheil Memorial Fund for Lymphoma Research is dedicated to providing educational support to oncology nurses who work with patients in bone marrow and stem cell transplant units in hospitals across the United States.
Charlena Wynn is currently pursuing her Master’s of Arts in Liberal Studies at NC State University with a concentration in examining the construction of Blackness in contemporary United States museums.