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New member
Jun 10, 2007
Hello to all-

eHope is a startup non-profit organization located in Portland Maine - We facilitate the day-to-day care provided by family, friends, neighbors and co-workers for families caring for a loved one with ALS. In cases where few caregivers exist, we collaborate with community-based organizations to recruit volunteers who step forward to assist in that care that care.

Each family is provided a trained eHope volunteer who facilitates an intitial face-to-face meeting with the family and their extended circle of care, and then leverages the web to streamline the flow of day-to-day communication in a way where no one's life is pulled out of balance and each of the familiy's non-medical physical, emotional and social needs are met. Each of our services are provided free-of-charge.

We currently support 11 ALS families and actively participate in ALS support groups throughout the State of Maine. We are interested in carefully and thoughtfully expanding our ALS care throughout New England and into other regions of the country.

It is our strong conviction that as critically important research presses forward in the effort of finding a cure for ALS, the development of innovative care models are equally important in assisting families with coping with the here-and-now reality of caring for a loved one who faces this dibilitating disease.

None of us is as good as all of us.
sounds good to me
great job
Hi Jeffrey-is hter a charge for these services? If not, how are you funded?
Community-based care

CindyM said:
Hi Jeffrey-is hter a charge for these services? If not, how are you funded?

eHope provides its services entirely free-of-charge and we survive on the strength of private donations. As I may have mentioned in my previous post, we currently support 11 ALS families throughout the State of Maine and are interested in starting additional ALS caring communities in neighboring states (NH, MA, VT, RI, CT) and/or helping other organizations with establishing the same range of care in other regions of the US and Canada.
Hi Jeffrey,

Hi there, What a wonderful program. Home Health Care is very expensive and this would be of GREAT help to the primary caregivers. We live in New Jersey and I know of at least 10 people with ALS within a 20 mile radius. The ALS Assoc. will send someone for 10- 15 hours a week at no charge this is a help but not enough for those who need 24 hour care. Hope we can spread this around the country. Thank you for the info. My Best to you, Beebe
It's possible...

Hello Beebe-

If and where you know of individuals who would be willing to train as volunteer facilitators to lead caregiver groups for these NJ families, we would be willing to help establish an eHope beachhead in your area. Please feel free to contact me by phone if we can help.

See also:

It's important to point out that eHope provides people, not just a secure web site for the families that we support. We spend 85% of our time in person-to-person mode and only 15% online, facilitating through the web. The web provides a tool which allows teams of caregivers (family, friends, coworkers, neighbors, churches and hospice) to effectively communicate and organize the day-to-day care over extended seasons of life.

Imagine the power of mobilizing 20 people who are willing to work as a cohesive team to provide care precisely when and where you need it - in a way where no single individual is overburdened.

In our experience, it takes a village to care for an ALS family. Individuals are typically more than willing to help out inside of a well-organized system if it is clearly communicated. I would be more than happy to put you in contact with ALS families who are currently using this system of care who can provide you with their perspective on how it all works and how it has simplified their lives.
Hi Jeffrey,

Hi , Thank you for the info. I am going to speak to a few people and I will be in touch with you. There is going to be a Benefit for my son-in-law Jack on Saturday July 7th, I thought maybe I could put out a flyer and see if there are people intersted in this program. Thought that would be a start! Last year's Benefit we had over 800 people attending. Unbelievable how many caring people. I will be in touch. If you go to my profile Jack has a web page that may be of interest to you. Who do you care for that has ALS? Have a good day,Beebe
Hi Jeffery and Beebe-I am starting to see how this works. Very creative! Please keep us informed on your progress. Thank you for sharing. Cindy
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