Kailua, Hawaii. The ALS Community in Hawaii has a long history of being organized around a support group that started in 1998. Joyce Okahashi and I worked with Kathleen Hurtubise-Lin, then Muscular Dystrophy Association-Hawaii Executive Director, to set up the first ALS Support Group. From then, a number of support groups across the state has been organized by the ALS Association (ALSA). Kauai and the Big Island now have regular monthly support group meetings. On Oahu, support group meetings are also held regularly in the Leeward area and in the Care Center of Honolulu, where in-patients and families can participate as well.
In 2014, an informal group of service providers representing MDA-Hawaii, ALSA, ALS Ohana, and ALS Foundation of Hawaii was formed to coordinate activities to celebrate May as ALS Month. Julie Hess, an indefatigable community volunteer conducting the annual “With Grace” 5k Run/walk/roll, also joined the group. Since then, this group has been sharing the responsibility of putting up activities to generate awareness of ALS in the state as well as encourage support for the different services available for pALS and their families.
This year, the ALS Community in Hawaii is set to commemorate May as ALS Month with the following schedule of activities:
- April 23, Tuesday, 10:30 am: Big Island Mayor Proclamation/Visit, West Hawaii Civic Center
- April 26, Friday, 1:30 pm: Kauai Mayor Visit/Proclamation Kauai County Rotunda
- May 2, Thursday, 2:30 pm: Mayo Caldwell Proclamation, Mayor’s Conference Room, 3rd floor Honolulu Hale. RSVP by 12 noon, Wednesday, May 1.
- May 3, Friday, 10:30 am: Maui Mayor Visit/Proclamation, Maui Mayor’s Office
- May 3, Friday, 11:15-11:45 am: Governor Ige Proclamation, State Capitol 4th floor. RSVP by April 22
- May 7, Tuesday, 11:30-am-12:30pm: “Role of Social Workers in pALS Care” Presentation, Queen’s Conference Center Rm 204, 1-hour CE for Queen’s Social Worker Staff
- May 11, Saturday, 8 am: 5th Annual “With Grace” Run/Walk/Roll, Kailua Beach. Register at www.localraces.com
- May 24, Friday, 4:30pm: “Mahalo, Hawaii” Signwaving. State Capitol Curbside.
- May 24, Saturday, 5pm: 5th “Lei of Remembrance” Memorial, State Capitol Courtyard. Potluck follows.
The Sign-waving and “Lei of Remembrance” has also been a tradition from the beginning. These two separate events held back to back are intended to thank the Hawaii community for allowing us to include them in ALS education and activities. Held the Friday before the general observance of Memorial Day, the “Lei of Remembrance” is held to encourage everyone, particularly us in the ALS community, to remember those who have passed on without benefit of a cure and to rededicate ourselves to the cause we all fight for: appropriate services for those who are going to be diagnosed with ALS and those already on their journeys with ALS.
Please join our community in any/all of these events, paying attention to the highlighted information.