News Highlight: An HD Hero Calls for Eyes on the Patient Care Homefront

Posted on at May 6, 2020
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HD Insights Celebrates Jack Griffin’s Hands-On Leadership.

Jack Griffin shares the high enthusiasm for the current HD research horizon, as he watches the surge in therapies that may slow or arrest the disease process, and enable us to envision a cure at last. Yet Jack, eight years the caregiver for his wife with HD, keeps his sights trained on the home front of patient care. Through difficult firsthand experience, he learned all too well about the yawning care gap that exists outside the clinic.

Jack has focused on addressing these deficits in “informal care” by supporting HD groups that provide the after-clinic care needed by HD patients and families here in the USA. He believes the availability of this care will be the magnet needed to reach the estimated 70 percent of HD sufferers who are “invisible”— not identified or receiving care. Lacking hope, many of these people simply choose to remain in the shadows. “Data shows when you reach one young adult in an HD family you can likely reach the extended family,” Jack explains.

He was no stranger to philanthropic projects before his wife Nancy’s diagnosis. He had already been instrumental in providing housing and better schools for the some of the neediest who live in the midst of underserved communities. Through his career in real estate development and multiple nonprofit projects, he learned what it takes to galvanize people and resources to change living conditions and lives. To this day, the D.C. inner city is dotted with buildings that have been built or converted to charitable use thanks to Jack’s work.

After Nancy’s diagnosis with HD, Jack applied his expertise to support needed education, care and outreach to the HD community. When others have said “It can’t be done,” he has found a way to make it happen. He has provided seed money, advised on project management, and found ways to get the needed pro bono work to turn many “impossible” tasks into accomplished realities.

BJ Viau, founder and chairman of the board at HDYO, captures the opinion of many when he says, “Jack is someone we should all hope to be one day! His generosity and strategic involvement in both the HD space and beyond has positively changed the lives of people around the world and will continue to make an impact for many years to come.”

A CAREER OF BUILDING

After graduating from Georgetown in business administration in 1962, Jack served as a lieutenant in the U.S. Army, stationed in Germany. He returned to the U.S. to enter the real estate business, starting with the NY Central Railroad, then joining General Motors. He then worked for a small D.C. commercial developer, providing a foundation for his next move. In 1980, he partnered with a colleague in launching a development company, Mulligan/Griffin Associates, Inc., which focused on building facilities for large high-tech firms. In 1998, his company merged into a top real estate investment trust, Boston Properties.

At 58, Jack began to put his financial resources and his experience in real estate development to work for others less fortunate. Taking early retirement, he created the Griffin Foundation (GF), which became his new career.

This led to 22 years of providing leadership and seed money to nonprofits in the D.C. area. His work began by developing the first single room occupancy (SOR) facility through an organization called SOME (So Others Might Eat). This was the first such facility to provide permanent housing for homeless people in Washington D.C. SOME has continued to develop multiple SORs and low- income housing for the homeless, seniors and other in need.

He then helped grow Victory Housing Inc., owned by the Archdiocese of Washington, D.C., into an important assisted living and low-cost independent housing provider for seniors.

At that point, his mission turned to addressing the financial difficulties preying on inner city K12- education in D.C. Jack provided partial funding and leadership to help keep 14 inner city schools open. In an effort to save seven of these schools that were facing imminent closure, he led their conversion to public charter schools. Today, they operate as top-tier performers.

In recent years, Jack has continued to use his leadership and foundation resources to address a broad spectrum of needs, such as projects undertaken by the Catholic Relief Services and other Catholic charities, reading programs, hurricane and earthquake relief efforts in Puerto Rico.

DEVASTATING NEWS LEADS TO HD ADVOCACY

Jack’s focus on Huntington’s began after Nancy’s unexpected diagnosis in 2012, which suddenly explained eight years of behavioral changes he had observed. He encountered another unpleasant surprise as he tried to navigate the landscape of HD care beyond the clinic. It became clear to Jack that the smattering of quality HD clinics across the country were a few pockets of gold amid a wasteland of care resources.

Jack refocused the Griffin Foundation on the simply stated purpose of “Expanding care and outreach to HD patients and families.” Through the foundation, he has served as a strategic organizer and provider of seed money and other support for projects at HDSA, HDBuzz, HSG, HDYO, HDCERC at MedStar /Georgetown, HDReach, Help4HD International, Vanderbilt HD Center and HD Puerto Rico.

One of his first projects was to help expand the training and education needed by medical professionals and social workers. When Dr. Lavonne Goodman, a volunteer with the Huntington Study Group (HSG), asked for help in raising funds for the first continuing medical education (CME) training, Jack answered the call.

This CME program has expanded and continues to grow the number of doctors, nurses and social workers who are trained to care for HD patients and families. Due to its success, several pharmaceutical companies now fund this needed program.

THE HUNTINGTON DISEASE CARE IMPROVEMENT PLAN (HDCIP)

In 2017, Jack joined forces with HSG to commission a formal study by Price Waterhouse Coopers (PwC) to evaluate the state of HD care here in the USA and develop a plan for improving the care landscape. This study would give birth to the HD Care Improvement Project (HDCIP).

PwC conducted a survey of 860 patients and caregivers to identify the deficits in care, leading to the release of new recommendations for care improvements. They also studied the HD organizations to identify the legal and logistical barriers that kept resources from flowing into HD community care. Their study report, published in 2017, pinpointed the characteristics of the disease that set it apart from others, both in terms of care needed and unique difficulties in securing needed funding.

PwC’s report included recommendations for moving HD care forward, founded on three initiatives: 1) a patient engagement and health promotion platform, 2) a translational research consortium and 3) an integrated community care pilot.

While the plan was met with interest from HD organizations and providers, today it remains aspirational. For all its devoted constituents, Jack explains that the HD community lacks leadership and resources that can be dedicated solely to executing the HDCIP recommendations.

“HD organizations — for the most part — are small. They are not funded by the hundred million-dollar campaigns that you see in cystic fibrosis or Parkinson disease that address both care and a cure,” Jack explains.

Grass roots fundraising for HD is confounded by a unique set of challenges: onset is usually in midlife, multiple family members may have symptoms, and family support may have eroded due to misunderstood behavioral changes and the intense patient care demands. Plus, the family’s personal finances may have been decimated by the cost of care and loss of employment opportunities.

These factors make it difficult to spread awareness, provide training, and marshal the care provider teams needed by patients and their families.

Friend and HD colleague Mary Edmonson, M.D., whose family is in their third generation of HD-affected family members, reflects on Jack’s passion for filling this need:

“I met Jack when I was invited to advise the Georgetown program at its inception about ten years ago. We had a spirited discussion about how to keep innovative HD programs sustainable and how to engage vulnerable HD families beyond the D.C. area. We have debated ideas about what care in the community could look like, now and on the day treatment advances will bring HD families out of hiding to receive care

— from an unprepared healthcare workforce.

Jack understands that for patients to receive good care, there has to be a well- trained network of providers to create a local, strong HD workforce. When we decided to create a basic curriculum for HD providers, he supported the CME4HD program at its inception and at every step since.”

BOOSTING FUNDING FOR HD

While he understands the primary focus on research on a cure, Jack reminds the community not to lose sight of the need to make the day-to-day reality for people living with HD more palatable. “There are a lot of ongoing casualties while HD devotes most of its funding to just finding the cure,” Jack says. “Given the treatments currently available and the knowledge we have about caring for patients, we should be able to achieve a reasonable and meaningful quality of life today for both patients and  their  families.”

Jack cites an echoing message from Dr. Martha Nance, Chair of the HSG Family Education Committee and Director of the HDSA Center of Excellence at Hennepin County Medical Center. “Until we find a cure for Huntington disease, the primary goal is to optimize function and quality of life for our patients.”

He maintains hope that future funding will enable leaders to pick up the threads of the HDCIP and move the plan into action. The new treatments coming online will create an expanded demand for services. More of the “hidden” 70 percent with HD need to be identified and come forward as candidates for these treatments.

Adequate funding will be critical to meet this expanding need. Jack sees a win-win for the community HD and for the pharmaceuticals if these companies expand their funding to support more HD clinics, social workers, and other care outreach.

INSPIRATION IS A TWO-WAY STREET

Today, Jack continues to lead the Griffin Foundation and to provide the daily care for Nancy, who he says is now benefitting from treatment with Austedo. Between her medication and excellent home care providers who work with Jack on how to respond to changes in symptoms and behaviors, home life has improved. “We are able to spend better quality time with our children, grandchildren and friends than before,” he says.

He is grateful to many who have walked the journey with him. “I may have found my way of giving to the HD community, but I don’t know where I would be without the support it has given me as well. For example, if it had not been for Dr. Karen Anderson taking my phone calls some nights and on weekends in the early days after diagnosis, I am not sure how things would have evolved. But to my point about the unmet funding needs, when I asked her why she was taking my calls, she said it was because she did not have the funding to pay for a social worker.”

Our thanks go out to you, Jack, for decades of unrelenting work to improve the lives of people who haven’t had a place to live, good schools or good care. Thank you, too, for reminding us that as we look ahead at new and promising research, we keep one eye on the here-and-now needs of HD patients. They deserve a reasonable and meaningful quality of life, and your work is making that possible for more individuals than ever before.

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