Until medicine proves otherwise, technology IS the cure.
ANNOUNCEMENT: Professional Caregiver ALS Educational Video Series
Is coming early 2019
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The ALS Residence Initiative is working on a BIG project this year. Yes, we are still trying to find sponsors to open up to 7 more ALS Residences here in the Boston area and yes, we are still advocating for others to open more ALS Residences around the country like NFL's Steve Gleason did in New Orleans but it is not happening fast enough. You wouldn't believe the number of applications we receive from people with ALS (pALS) and their families from across the country who are desperate to live here. If only there were a way to improve the quality of life for pALS in a traditional nursing home. Wouldn't it be nice if there were an easy way to educate caregiving staff at long term care facilities how to provide appropriate care to pALS? There soon will be. :)
I don't want this to be too long so I'll get to the point. Early next year, there will be a series of short, educational videos specifically focusing on training certified nursing assistants (CNAs) how to care for pALS. My theory is that quality of life suffers at traditional long term care facilities, not for lack of compassion but for lack of education about pALS needs (and money). I can't do much about the money angle other than recommend only considering non-profit facilities. Education is something ALSRI is uniquely qualified to do. It has long been a goal of mine to produce a video series to educate CNAs how to care for pALS. The dream became reality when PatientsLikeMe and the ALS Association made a generous grant so I can hire a professional filmmaker and illustrator to bring the project to life. I think it is my fear of being warehoused that motivates me to help institutional pALS so there will soon be a educational resource for pALS living in, or are considering moving to, a long term care facility. It will be free with no commercials on YouTube.
Please support the ALS Residence Initiative and the ALS Residences at the Leonard Florence Center for Living. Our 10th annual Walk for Living will be September 30. A $5 donation will be considered a "thank you, keep up the good work" kind of handshake/fist bump. Thank you for your continued support.
Professional Caregiver ALS Educational Video Series