Boston- The Sean M. Healey & AMG Center for ALS at Massachusetts General Hospital is thrilled to announce that the EGL Charitable Foundation has generously endowed the ALS House Call and ALS Parenting at a Challenging Time (PACT) Programs to ensure they will continue in perpetuity.

These programs are named in honor of Daniella Lipper, who together with Evelyn Gruss Lipper, was instrumental in creating and developing the programs.

“It is with profound gratitude that extend our thanks to Daniella and EGL” said Merit Cudkowicz, MD, director of the Healey & AMG Center for ALS and chair of the Department of Neurology at MGH, and the Julieanne Dorn Professor of Neurology at Harvard Medical School. “Programs like the House Call and PACT are pivotal components of patient care at the Healey & AMG Center. This gift ensures that our patients and their families receive the care and assistance they need in navigating this disease.”

These programs provide home based care, guidance and emotional support to individuals with ALS and their families. The ALS House Call Program was launched in 2017 and reduces the need for people with ALS to travel to Mass General Hospital to obtain highly specialized care. At the launch of the program in 2017, Daniella remarked: “We live in an era that prizes examination over intuition, technology over empathy and the search for cures over care for the currently afflicted. But by going into patients’ homes, the experts on the house call team will gain insights on par with those afforded by the most advanced imaging techniques and microscopy. They will experience the illness as their patients live it and, in doing so, I believe they will be better able to ameliorate symptoms, ease discomfort and improve quality of life.”

The Daniella Lipper ALS House Call program is supported in partnership with Compassionate Care ALS (CCALS), a nonprofit organization with a mission to support people diagnosed with ALS, their families, healthcare providers, and communities as they navigate the complexities, both physical and emotional, associated with the disease.

The Daniella Lipper ALS PACT Program brings much needed support to people living with ALS and facing the unique challenges of being a parent or grandparent. The program enhances children’s resilience by supporting parents with ALS and their partners to feel more effective in their parenting roles and to better recognize and address their children’s needs. Parent guidance is a valuable approach to supporting children indirectly, by supporting parents directly. The PACT program allows parents to share their fears and hopes for their children and grandchildren as they live with ALS.

In December, thanks to generous support from an ALS Finding A Cure We Care grant, the ALS PACT Program published 14 handouts with critical information for parents and grandparents with ALS. All materials are available for download or for printing on our website in both English and Spanish for free.

“The support of the Lippers and EGL makes it possible for us to continue to provide vital resources, assistance, and advocacy for those living with ALS,” said James Berry, MD, MPH, Winthrop Family Scholar in ALS Sciences, Averill Healey Endowed Chair in ALS and Director of the Neurological Clinical Research Institute (NCRI) at MGH.

Background on ALS

Amyotrophic lateral sclerosis, ALS, is the most prevalent adult-onset progressive motor neuron disease, affecting approximately 30,000 people in the U.S. and an estimated 500,000 people worldwide. ALS causes the progressive degeneration of motor neurons, resulting in progressive muscle weakness and atrophy. There are currently few FDA therapies approved for treating ALS—riluzole, edaravone (IV and oral formulation), Relyvrio, and Qalsody. Nuedexta is also used for the symptomatic treatment of pseudobulbar affect (PBA) in people with ALS.

About the Sean M. Healey & AMG Center for ALS at Mass General

At the Sean M. Healey & AMG Center for ALS at Mass General, we are on a quest to discover life-saving therapies for all individuals affected by ALS. Launched in November 2018, the Healey Center leverages a global network of scientists, physicians, nurses, caregivers, people with ALS and families working together to accelerate the pace of ALS therapy discovery and development.

Under the leadership of Merit Cudkowicz, MD and a Science Advisory Council of international experts, we are reimagining how to develop and test the most effective therapies to treat the disease, identify cures and, ultimately, prevent it.

The key to our success is our tightly integrated research and clinical efforts, encouraging opportunities to bring the challenges our patients face every day into our laboratories, focusing investigations on finding solutions that will make a meaningful difference to our patients without delay. Our collaborative efforts are designing more efficient and effective clinical trials while broadening access to these trials for people with ALS.