May is Huntington’s Disease Awareness Month. While this rare and fatal disease may be unfamiliar to some, it affects tens of thousands of Americans. At Catholic Charities we are proud to be one of a very few organizations to serve this specific community of patients through our St. Jude’s Project. To honor HD Awareness Month, we are sharing information about St. Jude’s and stories from the program’s dedicated staff and the courageous patients they serve.
St. Jude’s Project – a unique collaboration with Georgetown University Medical Center that is a first-of-its-kind service — is a special Catholic Charities’ program that provides critical and compassionate support at no cost to families and patients whose lives are affected by Huntington’s Disease (HD) and other life-limiting conditions such as Parkinson’s. The program developed a special approach to care to address gaps in social work services specifically for patients with neurodegenerative disorders, which it calls therapeutic patient navigation (TPN).
This innovative approach was created to work with a population that traditionally has been underserved and incorporates and expands upon several traditional models of care to best serve the unique needs of these patients and their caregivers. TPN helps patients reduce barriers to health care, giving them better access to preventative and sustained health care.
“There was a perception that it was a hopeless condition, and I really want to work to change that,” said Dr. Karen Anderson, Director of the Huntington Disease Care, Education & Research Center at GUMC in an interview with MedStar Health. “It’s true there is no cure, but there’s so much that can be done to make the condition easier for people who have it and for their families.”
Funded by the Griffin Foundation, the St. Jude’s Project employs a full-time social work manager and incorporates the work of graduate social work students. Each member of the St. Jude’s staff specializes in HD and are well-versed in the disease’s progression, making them an integral part of the patient’s care team. They help with everything from coordinating medical care to providing emotional support to 22 current clients, 10 of whom were diagnosed with HD, and their caregivers.
“The project was designed to see if we can use all the outreach potential at Catholic Charities to embrace the HD community,” said Jack Griffin, a lifelong friend of Father John Enzler whose involvement in HD charitable acts is motivated by personal experience. His wife was diagnosed with HD eight years ago.
Like many spouses of HD patients, he found the diagnosis and effects of the disease complicated. The medical care system does not address the extensive follow-up care needed by patients, caregivers, spouses and family members, he said.
“Given the nature of HD, which has a 50 percent probability of being inherited, many HD families are overwhelmed and have significant economic issues,” he said. “Catholic Charities in this region has extensive human resources, which can provide outreach and care to those in need.”
St. Jude’s staff travel across the District, Maryland and Virginia to meet patients where they are and accompany them to medical and therapeutic appointments. They become the communications hub for HD patients’ care teams, communicating observations and questions to doctors, and translating complicated medical information to patients. St. Jude’s patients and caregivers receive critical emotional support to tackle challenges like depression. A hallmark of St. Jude’s TPN model is that it treats caregivers both as a vital member of the care team, but also as a patient who requires special education, support, and services.
Because of the project’s uniqueness in the medical system, Griffin sees great potential to continue to expand the program to serve patients of other diseases who need extensive after-clinic care, including Alzheimer’s and multiple sclerosis, and to replicate the program. It can “benefit a lot of people, not just HD patients,” he says.
A graduate of Georgetown University and a retired U.S. Army lieutenant, Griffin led a successful career in real estate development in the Washington, D.C., area. He leveraged his professional abilities and success to help others in need through housing and education nonprofits. Upon retirement, he founded the Griffin Foundation and spent 22 years providing leadership and seed funding to deserving nonprofit organizations in our region. The foundation now focuses on “expanding care and outreach to HD patients and families.”
With his initial donation of seed funding to establish the St. Jude’s Program, Griffin has created an innovative model of access to quality, holistic care that extends far beyond the clinic. His philanthropic investment in Catholic Charities has touched and improved numerous HD patients’ lives and the lives of their eternally grateful families and caregivers – the home front of patient care. Griffin says to continue this legacy of care, adequate funding will be critical to meet the expanding needs.