ALS FOUNDATION OF HAWAII
STATUS REPORT as of DECEMBER 31, 2021
I. INTRODUCTION
When we developed the concept for the ALS Foundation of Hawaii in 2016-17, we agreed to have one mission: to establish an ALS RESIDENCE that would provide the kind of long-term humane and effective specialty care that people with ALS (pALS) required and deserved using state-of-the-art technology. In the intervening years, however, we quickly learned that the festering need for short-term respite care for family caregivers has not been addressed despite it being a community-wide concern since the1990’s, especially for pALS in the later stages of the disease. ALSA has acknowledged the increase in the number of pALS who were now living longer than the traditionally accepted maximum 5-year average lifespan from diagnosis. We now strongly believe that both needs – long-term residential care and short-term admission of pALS to provide rest for family caregivers – can be met by an ALS Residence.
II. SCOPE
This report covers the years from June, 2017 to December, 2021) and shall attempt to describe activities engaged in to accomplish the five major tasks/objectives, namely: 1) integration in the community; 2) service provision; 3) board development; 4) fund development; and 5) partner/organizational development.
III. TASK/OBJECTIVE: INTEGRATION IN THE COMMUNITY
A. Founding and Grant of 501(c)3 Status
We initially started with four founders. Robert Lundy of the Big Island is a Marine veteran with ALS. He donated the money for the legal help needed to organize the paperwork to set up a non-profit under Section 501(c)3. Since 2004, Katherine O’Connor’s brother, Brian, had been an in-patient at the Care Center of Honolulu (CCOH) – one of only two traditional nursing homes that were, at that time, approved to take in patients on assisted ventilation – for more than a decade. He died in 2019. Katherine was his personal advocate. Ronaele Whittington’s daughter, has ALS and lives in California, with her family. Divina Robillard’s husband Professor Britt Robillard died in 2015 after living with ALS for 31 years. Divina was his full-time caregiver the last two decades of his life.
All four founders were member-advocates of the ALS Residence Initiative (ALSRI) and part of the Hawaii ALS support group, which was sponsored by the MDA-Hawaii, at that time. Soon after helping found ALSFH, Bob Lundy resigned from the Board. Katherine, Ronaele, and Divina remained and continue to be in the Board and acting as its officers.
Non-profit status under Sect. 501(c)3 of the IRS code was granted on June 17, 2017.
B. Marketing Strategies
Soon after grant of non-profit status, the Board of Directors (BOD) sought to increase social media presence by developing a website, a Facebook page, Twitter, a newsletter, and Instagram account. The first two are very active.
Blogs on the website, www.alsfoundationhawaii.org, are posted at least twice a month in the “What’s New” page. The general public are able to send email and donations through the website. To keep followers engaged, blogs are posted biweekly and the FB cover is changed weekly. Instagram is less updated because ALSFH does not have a separate phone number that can be used for the account. A newsletter was started a couple of years ago but have not been pursued in recent months.
C. Cultivating a Community Presence
To disseminate information about ALS and the need for an ALS Residence, the Board met with several people in the long-term care community, health care organizations, and participated in numerous large meetings within the community or small classroom-style discussions. Examples of these events include in-service training meetings with Queen’s Medical Center social workers, a board meeting with the Kaimuki Lions Club, presentations in the UH JABSOM Department of Communication Sciences and Disorders and Waipahu High School, and caregiver training class- both online and face to face – through the St. Francis Healthcare Volunteer Program, to name a few. Before the pandemic, meetings like these were held on a regular basis, as the Board searched actively for groups and leaders in the community whose understanding of the mission would be helpful in attaining its goal.
Since 2014, the ALS Community in Hawaii has worked together to celebrate the month of May beginning with meeting with the Governor to proclaim May as ALS Appreciation Month in Hawaii every year. During the pandemic years of 2020-21, this in-person tradition did not occur. Instead, the Governor signed a paper proclamation, which was picked up from the State Capitol.
Every May since 2014, a “Lei of Remembrance” Memorial Ceremony is held at the Capitol on the last Friday of May before Memorial Day. A “Mahalo, Hawaii” sign-waving to passing rush-hour traffic in front of the State Capitol occurs a half-hour before the ceremony.
Because of the pandemic these past two years, video presentations of the Memorial Ceremony had taken the place of in-person gathering. These videos of what would have been the in-person ceremony were posted on YouTube. Sign-waving was resumed in person only in 2021.
IV. TASK/OBJECTIVE: SERVICE PROVISION
A. Information and referral
Strictly speaking, until the Residence starts operating, the mission does not include provision of service. Until direct, hands-on care is started, the Board takes every opportunity to teach the larger community about ALS and its consequences as well as refer them to resources requested. The website, launched in 2018, serves as the base for providing information about the organization and ALS.
The Board also tries to maintain close relationships with the other two ALS-related organizations present in Hawaii: ALS Association (ALSA) and ALS Ohana (ALSO). Except for the past two Christmases during the pandemic, all ALS-related service providers coordinated activities with each other and celebrated a yearly Christmas event for pALS and their families together.
B. Assistance with traveling pALS
On occasion, out-of-state people with disability, especially ALS, reach out for assistance in locating accessible places to stay and equipment to use during visits to the islands. About five pALS were assisted in this way, services ranging from personal involvement in local tours and assistance with pALS care to referral of their needs to appropriate state agencies.
C. Advocacy for veterans with ALS
The Board is greatly concerned about military personnel who have twice the risk of an ALS diagnosis than those who have never served. Right now, there is no known specialty care center for veterans in Hawaii. Because of this, tveteran with ALS (vALS) are either relocated to the nearest Veterans Administration (VA) facility offering skilled nursing care in the mainland or placed among the elderly residents of traditional long-term care facilities locally. Both are hard pills to swallow for vALS and families. Those who opt to move to the mainland have to uproot themselves from neighborhoods, friends, and other support systems that they have already built locally. Those who stay and are placed in local SNF’s find themselves housed with elderly patients who are the traditional residents of such SNF’s and whose reasons for admission are much different than those of pALS. Although they share the need for basic personal care and hygiene, and instrumental activities of living, their intellectual and developmental needs are different.
Giving voice to families of veterans, the Board met with local VA leaders to discuss this concern discuss the specific needs of vALS in an attempt to influence the design of the longterm care facility the Department of Defense is planning to set up on Oahu. The Board has also volunteered occasionally when requested by local VA.
D. Coordination with ALS-service providers in Hawaii
The Board maintains a cordial and cooperative relationship with the other agencies providing services to our ALS community. Information about activities are shared with them to avoid schedule conflicts that affect the same population served. ALSA local contact/case managers have provided important community demographic information to share during presentations. As stated earlier, a Christmas party is organized by and celebrated together with all ALS-service providers to the ALS community on Oahu, until the pandemic hit the islands.
V. TASK/OBJECTIVE: BOARD DEVELOPMENT
This is an area of concentration that has lagged because of the initial need to create awareness of the organization’s mission in the community, as well as developing the treasury. These next three years (2020-23) will be centered on developing policies and procedures related to Board membership and possibly, create the staffing structure needed to take the basics of the organization to a more robust, rationalized level. Increasing the number of directors is expected to widen organizational support network and the ability to distribute operational and administrative responsibilities for the organization. The expected increase in income would raise the organization’s credibility as a serious partner to achieve this much-anticipated resource in the ALS community.
VI. TASK/OBJECTIVE: FUND DEVELOPMENT
A. Sources of Funding
To date, income has been largely generated from fundraisers that were participated in by the Board’s personal networks. The Board is aware of available philanthropic and governmental support, but it also has neither the skill for grant-writing nor the resources to hire grant-writers and other professionals. The few competitive grant possibilities that were attempted did not prosper. It is hoping to address this negative asset in the ensuing three years.
B. Fundraising Activities
Most of current income, now at $86,000, has come from donations of personal friends ranging from $5 to $1,000. In the early days, a pALS’ personal friend donated $10,000 providing the capital to build and maintain the website.
Small fundraisers, such as a bowling competition, in cooperation with Pali Lanes, a small business co-owned by a relative, netted the biggest income so far, at $8,000. With Oahu Nursery Growers Association’s (ONGA) help, $2,000 was raised. ONGA was a connection provided by the husband of a deceased pALS.
The most fruitful (and numerous) have been several fundraisers through Facebook, generating as much as $9,000 total. Another person familiar with ALS from another state donated $5,000 recently.
The Board has been a very careful steward of the donations and money earned. Most every dime is saved, using money only to keep operations going such as website domain use and mailing expenses.
VII. TASK/OBJECTIVE: PARTNER/ORGANIZATIONAL DEVELOPMENT
A. Initial Attempts
The first potential partner met with in 2018, after the granting of non-profit/tax deductible status was St. Francis Health Care System (SFHS) CEO/President Jerry Correa. SFHS meets all the criteria recommended by the ALSRI founders as the ideal partner. SFHS, a non-profit, has a local reputation for being an outstanding healthcare management system and community member.
During the first meeting with Mr. Correa, he shared that part of the vision of SFHS is to establish initiatives to meet the needs of those suffering from some diseases of the elderly such as Parkinson’s, Alzheimer’s, and Diabetes. ALS is one of the target diseases. In the past few years, SFHS also has been building a large campus in Honolulu called “Kupuna” (Elderly) Village. Two years ago, they built a SNF, and in mid-2021, opened an assisted living facility in Honolulu.
The Board also met with other entities that appeared to have the ability to partner with ALSFH: a licensed brick-and-mortar facility with state of the art technology that will meet the specialty care needs of our ALS brethren. These entities included the VA, Queen’s Medical Center, and the University of Hawaii-West Oahu Campus.
The Board also explored possibilities with the Kaimuki Lions Club and the organization’s needs discussed with staff of Senators Hirono and Schatz. Politicians and their staff were also approached. Only Lieutenant Governor Josh Green has been consistent in his interest in the mission and has provided ALSFH with the most support.
B. Continuing meetings with Lieutenant Governor Josh Green and St. Francis Healthcare System President/CEO Jerry Correa
The initial instinct to meet with SFHS CEO Jerry Correa first was the most logical, seeing that SFHS met all the criteria for an excellent partner. The Board is still talking with Mr. Correa, as he gives ALSFH the best chance so far of coming true. However cautiously optimistic he was in his statements, Correa was always seemed open to the idea. On the other hand, LG Josh Green – himself a doctor of medicine who shared that one of his aunts had died with ALS – has personally visited the first ALS Residence in Chelsea, MA on one of his private trips and met with Steve Saling, the pALS/resident who designed the Residence in Chelsea.
In July 2021, the Board met virtually with these two men who have been very helpful: The LG with his words of encouragement and offer of help with SFHS and/or with other possible partners, and Mr. Correa, still hesitant, but not outrightly thumbing down the possibility.
At this point in time, the Board awaits Mr. Correa’s “right time” to take up a the subject of an ALS Residence with the SFHS Board, while LG Green offered to talk to other leaders in the community who can help organize this effort.
VIII. PLANS FOR THE SECOND THREE YEARS: 2021-23
The first three years gave the Board a chance to develop a working relationship. While the Board members have a number of common bonds with each other as relatives of pALS and their caregivers in different contexts and lengths, they had not necessarily worked closely on a project together on a scale and complexity as that of facilitating the establishment of an ALS Residence. As professional career women, each of the board members were not managers. Their collective backgrounds are nurse education and social work, skill sets that were helpful on one-and-one interactions with people who needed some kind of assistance with their health issues. They were not easily translatable to the organizational needs of ALSFH. It was during these early years that the board members realized the need to have additional skills in grants-writing, fundraising, data-base development, and management/accounting.
The two years of the pandemic have also highlighted the need to adapt to going virtual in every manner of contact with potential partners and donors. The newly acquired digital skills of the board members were stretched to the limit. But like most dedicated non-profit workers, they were able to cope with, initially just virtual, then hybrid, kinds of interactions. To this date, the Board has continued meeting virtually, despite easing of the pandemic-related restrictions.
Realizing the need for a more varied skill set, the Board members have opted to increase its membership in order to disperse the responsibilities that come with the huge task which they face. Although this need had been identified much earlier, it had been only the last six months of 2021 that the members focused on identifying people who would meet this need, reviewing policies regarding recruitment for board membership of other similar non-profits, and creating policies that would fit ASLFH.
The Board also feels that it might be necessary to create staff – paid or volunteer – that will provide the day-to-day work of a non-profit, such as data-base management/review/creation, and professional fundraising. As primarily volunteers who are no longer in the pink of youth, the Board recognizes diminishing capability to accomplish what is required by this much anticipated and hoped for development in the Hawaii community.
The Board shall continue all the activities that it has started in all task areas.
Divina Telan Robillard,
President/Member, Board of Directors,
ALS Foundation of Hawaii
7 January 2022