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Programs

Cultivating Compassion Education Series
House Call Program
ALS Patient, Family and Caregiver Support Program
Van Program
CCALS Medicine Bag
Equipment

Cultivating Compassion Education Series

Our Cultivating Compassion Education Series shares with others the knowledge that we have gained caring for and supporting individuals living with ALS, their families and their communities. Cultivating Compassion helps to improve effective communication among individuals living with ALS, families and healthcare professionals, while shedding light on the realities of living with and dying of ALS. The gatherings and workshops offer a myriad of ideas about caregiving immersed in an experience of connection, belonging and common ground.

The Cultivating Compassion Education Series is designed to provide an honest, open and accepting forum in which to explore various aspects of the ALS experience for everyone involved. Our talented staff will facilitate the discussion and make sure everyone’s voice is heard and respected. At times, experiential exercises will be offered to support participants in connecting deeply with themselves and their peers in a genuine encounter with heart and soul.

Gatherings to be facilitated by CCALS staff: Senior Family Care Liaison, Eileen Garry; Senior Family Care Liaison Erin Lajeunesse MSW; Senior Family Care Liaison, Chris Curtin; Grief and Bereavement Care Liaison, Brenda Fox; Trauma & Spiritual Care Liaison Julie Brown Yau, PhD.; Volunteer Program Director, James Churches; and Founder/Executive Director Ron Hoffman.

Ron Hoffman

Ron Hoffman co-founded Compassionate Care ALS in 1998 and has served as Executive Director ever since. As such he deals regularly with end of life care, including needs evaluation and instruction on ALS disease progression. He facilitates and guides intimate discussions with ALS patients and their families who are nearing death or actively dying around the process of death and dying and the questions that arise, helps them examine their choices, and creates space for dialogue around their beliefs and decisions.

Erin Lajeunesse

Erin joined the CCALS team in January 2012 bringing with her over fourteen years of social work experience. In addition to her significant professional track record in the social services sector, Erin has worked in end-of-life care as a hospice volunteer and as a Reiki energy healing professional. In her role as Senior Client Care Liaison, Erin regularly makes home visits and helps assess the needs of each of our families. This year, Erin became a S.H.I.N.E.(Serving Health Insurance Needs of the Elderly) Certified Counselor. With this certification, she is qualified to advise on Medicare/Medicaid applications and help our families expedite the approval process. Erin holds a B.A. from University of Rhode Island, a M.S.W. from Boston University, and is a licensed independent clinical social worker (LICSW).

Julie Yau

Julie Yau holds a BA in human behavior and an MA in spiritual psychology. For over fifteen years Julie has been studying and teaching in the field of body, mind, and soul. She studied with Roshi Joan Halifax in the Compassionate Care of the Dying Programs for professionals. She coordinates closely with hospital staff, care givers, and chronically ill patients. Julie developed the Cultivating Compassion Education Series for CCALS and offers meditation and contemplative work to those with ALS and their caregivers. She also supports those on the ALS journey through her ongoing psychotherapeutic practice that incorporates her knowledge of somatic psychology and contemplative awareness.

Paul Shea

Paul Shea and Ron have been friends since 1993. He has been a student, teacher and practitioner of Asian healing and contemplative movement arts for the past 28 years. He has studied in China, Los Angeles and New York and he has taught and lectured at various locations throughout the South Shore, Cape Cod, Florida and Los Angeles. Paul founded and developed the Tai Qi program for the National Multiple Sclerosis Society and has taught Tai Qi, Qi Qong and Mindfulness Meditation to MS Patients and caregivers. He is currently helping CCALS develop a similar program for our community and caregivers.

Paul is also a practitioner of Oriental Bodywork Therapy, an staunch proponent of herbal medicine. He is currently working on his certification as a registered somatic movement therapist at the Leven Institute for Expressive Movement in Lenox, Ma. He presently has a private bodywork and teaching practice in the greater Plymouth area.

House Call Program

Since 2017 CCALS has partnered with Massachusetts General Hospital’s (MGH’s) Healy Center for ALS on The ALS House Call Program which gives homebound ALS patients of all socioeconomic situations access to medical services in the home. CCALS and MGH bring high quality and patient-centered care to ALS patients in their own homes. The exciting partnership allows us the ability to introduce our families to the latest research and clinical trials going on at MGH. This initiative is being led by Dr. Merit Cudkowicz, Chief of the Department of Neurology at MGH and CCALS’ Founder/Executive Director Ron Hoffman.

www.massgeneral.org/neurology/als/research/platform-trial

ALS Patient, Family and Caregiver Support Program

When a family receives the devastating diagnosis of ALS, they are faced with an overwhelming array of questions, paperwork, medical advice, financial and logistical challenges, and life-altering changes. Conventional health care does not begin to address the complexity of these needs. That is where CCALS steps in to fill the void in services. Our ALS Patient, Family, and Caregiver Support Program includes making home visits to meet with families face to face; engaging in intimate dialogue around disease progression, dying and death; offering guidance, providing emotional support; helping families obtain durable goods not covered by insurance; and referrals to numerous specialists. In addition to frequently visiting those living with ALS at home, our staff are regularly available for consultation over the phone.

Van Program

Our van program has provided invaluable access to accessible and adequate transportation to our clients living with ALS. We provide wheelchair accessible vans for use for individual clients, caregivers and families, living in Massachusetts and surrounding states. Utilizing these vans allows those dealing with ALS to complete a variety of tasks, from spending the weekend on a family vacation, to being able to attend critical medical appointments. Our van program is essential in helping our clients maintain a higher quality of life, and a service we are proud to offer.

The CCALS Medicine Bag

CCALS has used our many years of experience working with ALS families to put together a collection of the best non-institutional resources that help bring dignity to those living with ALS. Our Medicine Bag is given to all new CCALS families and contains products like Gait Belts and Transfer Slings, that help patients stand and transfer from one space to another, and Pivot Disks, on which the patient stands to move from one location to the next when they can no longer move their legs. It also includes inspirational books and CDs that we have found beneficial. The Medicine Bag contains many items not covered by insurance that families might not anticipate needing when first diagnosed, but will be grateful to have at their disposal down the road.

Equipment

Due to the limited mobility experienced as ALS progresses, our clients require access to a variety of items intended to improve quality of life and help their families and caregivers to better manage the issues associated with this degenerative disease. CCALS provides new equipment, in addition to equipment that was donated and refurbished. The items we offer include; wheelchairs, ramps, bath chairs, mattresses, voice amplifiers and speech augmentative equipment and communication boards.

Equipment Storage

CCALS receives more than $500,000 annually in donated durable goods. We maintain a number of storage facilities where we refurbish and keep this equipment until it is needed by a family. Our storage facilities have received generous support from two communities.

In memory of Claire Gormley Collier

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In memory of Jon Blais

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