For as long as I can remember, the fifth month of every year is celebrated as ALS Awareness and Families Appreciation Month in our community. And May is in a few days! The celebrations always start with the Governor issuing a proclamation to that effect and since the first proclamation, it had been always been held in the Governor’s Ceremony Room in the State Capitol surrounded by serious looking portraits of former governors hanging from dignified wall panels of koa . Everything about the room speaks of solemnity, understated elegance, and gravitas. Both American and Hawaii Flags stand guard over the large desk in the center of the room. Comfortable chairs spread in a half-circle around the desk, its position in the center designed to  command the attention of each and every guest.

The last Proclamation in 2019 was led by Lieutenant Governor Josh Green, substituting for Governor Ige. Mona and Risa Fuimaono provided the response.

Unfortunately, we won’t be seeing the inside of the Ceremony Room again this year. The Governor will issue a Proclamation on May 6, declaring May, 2022 as ALS Awareness and Families Appreciation Month, but we will neither have the opportunity to listen to the Governor read the Proclamation to us in the audience, nor listen to a response from one of our pALS. The official Proclamation will be ready for pick up from outside the Governor’s office doors, couched in its portfolio on May 6 and will appear in our website soon after pick-up.

On May 21, the very first ALS Residence 5k Run and Fun Fair will be held in front of the Pavilion at Kailua Beach Park at 8am.  For many years, the “With Grace” 5k Walk organized by Julie and Steve Hess was held at the same spot until a couple years ago when its honoree, Hess family friend and pALS, Jeff Madelone, passed away.

The finish line at the last “With Grace” 5k at Kailua Beach with Renee and Shaun Brewer and their supportive friends. The Brewers have since moved to California to be nearer their Renee’s relatives.
Julie Hess, devoted friend and volunteer fundraiser for Project ALS, presides at one of the six “With Grace” 5k that she and husband, Steve, pioneered.

Not willing to let the spirit of the event just fade away into oblivion, the Hess Family is teaming up with ALSFH to organize the walk. The goals for donation and participants are   $5,000 and 100, respectively.  There will be informational as well as fun and service booths to complement the walk, in support of the return to community socialization following the two-year pandemic.  Come and join the fun! Registration costs $30 and there is opportunity to put together teams. To participate in the walk, which will begin and end in Kailua Beach Park and loop around Lanikai, just click on this site:

The cover page of the first ALS Residence 5k Walk and Fun Fair race website.

Finally, the last traditional event in the month of May for our community is the sign-waving and “Lei of Remembrance” Memorial Ceremony at the State Capitol, held the Friday before Memorial Day, May 27. At 4:40, we will gather in front of Father Damien’s statue and wave our thanks to the community for celebrating the month in honor of our pALS, living and dead, and their families.  At 5:00, we return to the courtyard and begin the quietly touching ceremony of reading the names of our dead while a lei is being strung representing them.  Following the short ceremony, we will share a potluck supper.

Part of the group that participated in the yearly sign-waving in front of the State Capitol on Beretania, immediately before the Lei of Remembrance Memorial Ceremony.
The empty wheelchair, a yearly sight in the Memorial Ceremony to signify those whom we lost to ALS.
Kumu Keahi Renaud chants a mele oli, preparing our spirits and hearts for the Memorial Ceremony.

The traditions marking our May celebrations are being kept alive for as long as we are still continuing to battle ALS everywhere in the state.  Let us all spark in the lingering passion to search for a cure and to continue to develop resources such that our ALS community will have access to dignified specialty care – be they in individual homes, hospitals, and long-term settings.

We look forward to enthusiastic participation in these events.