ALS Foundation of Hawai'i

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Establishing A Smart Home for People with ALS

ALS (Amyotrophic Lateral Sclerosis or Lou Gehrig’s disease) is a disease that kills the nerves that control one’s ability to move. It is both a rare and an orphan disease. It is rare because it affects less than 200,000 people in the US. It is “orphan” because the pharmaceutical industry has little economic incentive in “adopting” the disease for development of treatment: it is not as profitable as those diseases that affect people more commonly. ALS is difficult to diagnose because there are no tests that confirm its presence. It is a complex disease in that, because its pattern of progression is very individualized and difficult to foretell, there is no straightforward management for it. There is no known cause; and no cure. It affects anybody regardless of race, gender, economic status. All people with ALS (pALS) are paralyzed as the disease progresses and eventually need artificial ventilation to survive.

The unceasing, unpredictable, and stark onslaught of loss of function is a constant threat to the integrity and the physical/emotional/mental health of the family and pALS. In many cases, the 24-hour care required - by the inability to move and/or breathe independently - gives the pALS and family few options to choose from: to continue to impose on the resources of the family or to live in a nursing facility ill-equipped to provide the specialized care that pALS need to live with a reasonable quality of life. In the face of these unpalatable alternatives, many refuse assisted ventilation. Those who do go on to live in institutions, face a life staring at ceilings, with few prospects of leaving the facility except to deal with frequent acute episodes of pneumonia in hospitals, and little opportunities to interact meaningfully with their environments. It is a life they live, the end of which they merely wait for, in their shell of a body.

In 2014, the four of us, individually and independently, signed up as Super Advocates in the website of the ALS Residence Initiative (ALSRI). We shared the same dream: to establish an ALS Residence in Hawaii. Being in a small ALS community in a small state, we all knew each other as people whose lives had been irrevocably touched by ALS. Divina Telan Robillard’s husband passed away in 2015 from ALS complications, after living with it for 31 years. Robert Lundy, diagnosed in 2011, is a Marine veteran who lives in the Big Island of Hawaii. Ronaele Whittington’s daughter in California was diagnosed in 2000. Katherine O’Connor’s brother Brian has lived 12 out of 17 years with ALS in a nursing home. Brian’s life as a pALS in a nursing home and Kathy’s life as his caregiver/advocate constantly remind us that WE NEED AN ALS RESIDENCE IN HAWAII.

In 2016, we formed an Ad Hoc committee to make our dream come true. One of us traveled to Massachusetts to visit the first ALS Residence established in the country and to meet our Maine counterparts. Later that year, one of us donated the money to hire an attorney to formalize the applications for incorporation and federal tax exemption. In February 2017, the ALS Foundation of Hawaii was incorporated. Four months later in June 2017, it was granted 501(c)3 status. We, the four founders - Telan Robillard, Lundy, Whittington, and O’Connor -formed its first Board of Directors and officers, as President, Vice-President, Secretary, and Treasurer, respectively.

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