About Compassionate Care ALS

Who are We?
Compassionate Care ALS is a 501(c)(3) nonprofit that offers individualized support to ALS patients, families, and caregivers.

What is ALS?
ALS, also known as Lou Gehrig's disease, stands for Amyotrophic Lateral Sclerosis. It is a neuromuscular disease that can attack any person regardless of race, gender, wealth, education, or geography. People with ALS progressively lose control of the voluntary muscles of their body. The cause of the disease is not understood. There are no effective treatments, and there is no known cure.

Our History
Compassionate Care ALS grew out of the work of the Gordon T. Heald ALS Fund, which was founded by Gordon's wife Elizabeth Heald and caregiver Ron Hoffman. Gordon was an entrepreneur and philanthropist who was diagnosed with ALS in 1997. Donations garnered from his obituary served as seed money for the fund. In 2003 Hoffman founded Compassionate Care ALS, encompassing the Heald Fund and expanding its services to include families, caregivers, and health care professionals – in addition to ALS patients. Since 1998, the Gordon T. Heald ALS Fund and Compassionate Care ALS have helped guide more than 600 families in Massachusetts, New England, across the country and around the world impacted by ALS by assisting with:

• the purchase of high-cost items for daily living assistance
• connections to others impacted by ALS
• access to integrative therapies
• support for the quality of life for patients and their immediate circles of care.

Why do ALS Families Need Support?
Research increasingly suggests that supporting caregivers and families helps reduce the distress and fear faced by the patient and improves his or her health and quality of life. Since ALS attacks without warning and often progresses rapidly, patients and their families are confronted with unanticipated challenges that can shift daily. In addition, the stress of managing this illness, frequently in combination with the responsibility of earning an income, caring for a family, and addressing grief issues, takes a strenuous economic and emotional toll. Conventional medical support is grievously inadequate to address these needs.

What does Compassionate Care ALS Offer?
Our range of services helps individuals to live as fully as possible within the parameters of the illness, and to gracefully experience the end of life with conscious choice and compassion. Our work is tailored to meet the individual needs of each patient and family. Types of assistance we offer include:

• Emotional Support – Our staff listens and suggests options. We visit families at home, facilitate gatherings for caregivers, offer counseling, match caregivers with caregivers & patients with patients to foster intimate dialogue at home or in other safe settings.
• Integrative Therapies – We subsidize massage, acupuncture, craniosacral therapy, self-inquiry, energy work, contemplative practice such as meditation, and we promote self-care for both patients and caregivers.
• Contemplative Practice – We work one on one with caregivers and families, teaching meditation and visualization techniques to help alleviate fear and anxiety and to promote well-being.
• Education – We lead workshops on "Cultivating Compassion" for health care professionals, caregivers, and the community about investigating conscious choice, living and dying with terminal illness, practicing self-care, and other topics related to ALS.
• Van Service – We loan a wheelchair-accessible van for everyday needs and special trips.
• Youth Program – Children of ALS patients are offered rites of passage programs and other supportive resources.
• Gordon T. Heald ALS Fund – We subsidize the purchase of home care equipment such as communications devices and wheelchair ramps, and assist with prescription costs and other living expenses as needed.
• Other assistance – We are responsive to a broad spectrum of special requests to ease the family burden of living with ALS.

How Can I Help?
Send your tax-deductible donations to: Compassionate Care ALS, P.O. Box 1052, West Falmouth, MA, 02574 or contact Ron Hoffman at 508-444-6775 or ron@ccals.org to inquire about donating goods, services, or volunteering your time.