This report covers the year 2022 from January 1 to December 31. It shall attempt to describe activities held 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.
TASK/OBJECTIVE: INTEGRATION IN THE COMMUNITY
Continuing to Cultivate a Community Presence. Even with reportedly better containment of the virus worldwide, the effect of the pandemic on social interaction has lingered through the first four months of the year. Extent of precautions differed from one social arena to another, the decisions regarding maintenance and extent of precautions becoming more of an individual issue than mandatory.
Reflecting this general attitude, the BOD maintained a cautious attitude: continuing to meet virtually and not seeking face to face interactions within the community, relying on social media to keep its presence in the community alive.
The month of May – traditionally celebrated as ALS Month – was configured to move towards loosening of precautions, wherever possible. State Capitol entry was still restricted. Thus, instead of a ceremony at the Capitol, the Proclamation document was picked up and posted on the website. On the other hand, the Memorial ceremony was held in person for the first time since the pandemic. It was attended by some pALS and representatives from local ALS service providers. A total of 294 names of pALS who have died were read solemnly. About 18 names were added since the same time last year – more or less, equal to the Incidence Rate of 21 per year.
An open-to-the-community 5k run/walk was attempted for the first time, successfully, with the help of Julie Hess, a local Project ALS volunteer and collaborator of many years. It followed Julie’s template of the annual Project ALS “With Grace,” which she headed for many years until it was discontinued following the honoree, Jeff Madelone’s death in 2019.
Samie Solina, a KHON TV reporter, created a three-part documentary series on chronic disability based on interviews with Katharine O’Connor, the Fuimaono family, and Divina Robillard. It aired in Jun/July and has since been available online. The showing was announced on both FaceBook and the website.
Marketing Strategies. Notable individual meetings included those with Dr. Nancy Walch (Executive Director, Philippine Nurses Association of Hawaii) and UH West Oahu student Kiri Hirota. They paved the way for collaboration with the local chapter of the Philippine Nurses Association of America and the Future Health Professionals (formerly HOSA – Health Occupations Students of America). The result of the discussion with PNAH was a booth at the Membership Appreciation Day and Family Fair of PNAH held in September. Hirota arranged for a zoom presentation with some members and the faculty adviser of the HOSA regarding ALS and the role of the ALSFH as a future health resource for the Hawaii ALS community. Hirota is also the first UH West Oahu intern, ongoing this Spring semester, 2023.
Online presence was maintained through Facebook page and the website. FB covers were changed a total of 23 times. Three blogs on various subjects were also posted on the “What’s New” page of the website.
TASK/OBJECTIVE: SERVICE PROVISION
Information and referral. Five emails received through the website requiring assistance with care were forwarded to ALSA. An additional two referrals were travel-related (loan of durable medical equipment).
Education. There were two inquiries about internship: one fell through (student did not follow up); the other one is ongoing. Both were from UH West Oahu.
Continuing collaboration with other ALS service providers on Oahu. The most successful collaboration continues to be the two major events of the ALS community. The “Lei of Remembrance” Memorial celebration was held in person at the Capitol Courtyard with ALSA and ALS Ohana represented. The Christmas party was also held at the Honolulu Central SDA Church lanai after three years of cancellation. It was attended by a significant number of families. Major (Ret.) Ramon Sumibcay of PNA Hawaii provided the entertainment by singing Christmas carols solo and with small groups.
TASK/OBJECTIVE: BOARD DEVELOPMENT
On becoming a focus. 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 (2021-24) will be centered on developing policies and procedures related to increasing Board membership number and involvement in organizational affairs. An area that needs to be explored is creating a staffing structure needed to take the basics of organization development 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.
Progress to date. The beginning of the year concentrated on identifying names and then, later, reaching out to 10 invitees. The following Hawaii residents accepted the invitation:
- Ms. Nieva Elizaga
- Melody Calisay, PhD
- Ms. Jade Guess
- Patricio Abinales, Jr., PhD
- Raymund Liongson, PhD
- Julie Hess, RPT
Ms. Elizaga was trained as a home economics major at the University of the Philippines (UP). In the US, she worked as a hospital nutritionist before she became her physician-husband’s clinic manager. She now works parttime. She has three grown-up children and 3 grandchildren.
Dr. Calisay is a retired State of Hawaii DOH environmentalist. She operates a business importing food products from the Philippines to Hawaii. She graduated with her PhD from the University of Hawaii in Soil and Agriculture. She is married to a local Part-Hawaiian.
Ms. Guess is a Public Relations graduate of the Hawaii Pacific University currently working with Partners in Development Foundation as Development and Communications Manager. She was the Executive Director of MDA-Hawaii, a long-time provider of care for the ALS community until it ceased operating in Hawaii in 2020.
Dr. Abinales is political historian and graduate faculty of the UH Department of Asian Studies. He has published numerous books and articles in various journals and contemporary media outlets. He is a widower with a college-age daughter.
Dr. Liongson graduated with a PhD from the UP, Diliman campus. He is a retired faculty member of the UH Leeward Community College where he founded the Center for Philippine Studies. He has been a long-time member of the US Commission on Civil Rights Advisory Committee for Hawaii. With his nurse-wife, he has two adult children.
Ms. Hess is a registered physical therapist working with the DOE. She is a native New Yorker but a long-time Oahu resident with two school-age boys. She volunteered for ALS causes and organized the annual “With Grace” 5k Walk/Run for many years until the walk/run honoree, her friend Jeff Madelone, died in 2019 with complications of ALS.
At this time, a New Board Member Orientation session is being planned for March, 2023.
- TASK/OBJECTIVE: FUND DEVELOPMENT
Sources of funding. Income is largely generated from individuals all over the country and local businesses. Individuals from personal networks account for the majority of incoming funds, many of whom are repeat donors sending checks. There are two donors that give a fixed monthly sum through the website’s Paypal account. Facebook directs funds raised on their platform through Network for Good.
Fundraising activities. Activities that have brought in income in the past such as the Christmas letter appeals, Facebook birthday fundraiser and “Very Merry Event,” were repeated in 2022. For the first and only time, ALSFH received a donation raised by a small business (Ohana Sub), partnering with a local credit union that made use of federal pandemic assistance.
For many years, ALSFH has supported the “With Grace” annual 5k/Run/Walk led by Julie Hess. When it was stopped, we asked Julie if she would help us develop a similar fundraiser using her template. When Julie agreed, we started working on the mechanics of setting up an on-line registration site with the help of a web designer. We had envisioned the run/walk to be a family fun fair to create more visibility in the community for ALSFH. Aside from the run/walk, we included a raffle, yoga session, a lei-making station, and a photo booth. PNAH provided a first aid station and the UP Alumni Association assisted with the set-up and take-down. We had a good result from this initial experiment, both impacting treasury and community outreach.
Treasury report. As of the last Treasurer’s Report submitted for the December, 2022 BOD Mtg, the following were in the bank:
| Type of Account | Dates Covered | Ending Balance ($) | TOTAL |
| Checking | 12/04/22-1/04/23 | 3,135.35 | |
| Savings | 108,405.79 | ||
| 111,541.14 |
Total income from all sources for the year 2022 was $17,673.78, with total expenses at $2,049.29.
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.
- TASK/OBJECTIVE: PARTNER/ORGANIZATIONAL DEVELOPMENT
The end of 2021 saw the Board in a waiting mode for St. Francis Healthcare System CEO Jerry Correa to pick up where the discussion was left. He was waiting for the right time to take up a new project with his Board of Directors. The right time, according to Correa, was for the newest SFHS project, the assisted living facility on the Kupuna Village to reach 50% occupancy.
In March, the Board followed up the status with a letter of inquiry to Correa. Correa did not respond.
Meanwhile, Lt. Gov. Josh Green entered the race for Governor of Hawaii and started a campaign. In his own words, LG Green said his win would put him “in a better position” to act on the project.
While working with these two gentlemen, pivotal to the project, was put on hold, two things happened. In late October, Jerry Correa died unexpectedly. Early in the next month, LG Green was elected Hawaii’s governor, as expected.
- PLANS FOR THE YEAR 2023
Board development. ALSFH enters a new era with the expansion of Board membership, planned in late 2022. As of this writing (February, 2023), Two men and four women have accepted the invitation as BOD of ALSFH. New Board Member Orientation is set for March, 2023. It is expected that the newly configured Board will tackle the review of current plans and activities and redirect as necessary.
Continue current activities. The Board shall continue working on all task areas, where success has been proven. These include the 5k Run/Walk in May, FB fundraiser in August, and the Christmas Letter Appeal late in the year. Traditional events, such as the Proclamations and Memorial in May and the Christmas Party in December, will also be carried out. The new Board will pick up the thread of discussion for partnership with SFHS Interim CEO Melissa Ah-Ho Mauga with the now Governor Josh Green. Ms.Mauga had been present in our early discussions with Jerry Correa as his VP of Operations.
Divina Telan Robillard,
President/Member, Board of Directors,
ALS Foundation of Hawaii
27 February 2023