ALS awareness

Celebrating May, 2022: Year Three of the Pandemic

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…

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Our Christmas Message to You: Thank You For Your Support!

At the First Christmas, Mary and Joseph’s task at hand was to find a place where the Messiah was to be born. In some ways, ALS Foundation of Hawaii has a similar mission: search for a place in which a tale of redemption could begin. People with ALS (pALS) who decide to live with ALS need a place where their potential for growth and development, may find fulfillment; not just a place to die in. Despite the relentless wretchedness of…

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Justin Hendrix: “This is the End…NOT!’

Finally! Justin Hendrix’s book has come off the press. “This is Not the End”, a self-published collection of personal experiences, heartwarmingly describes Justin’s life starting from when he heard from doctors in 2012 that he was terminally ill with ALS and what he did with what he thought was left of his life following that grave pronouncement. While working on our brochure in early 2018, four people with ALS agreed to have their images on the brochure as the “faces”…

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The Quest for Donated Wealth: My Take on the Mackenzie Money

The recent news about marital splits among the two wealthiest couples who also happen to be the source of staggering amounts of money given to philanthropy has created a brouhaha amongst us in the non-profit world. We in the Board speculated with interest what the divorces meant – and it’s not because we have in any direct way benefitted from the Bezos or Gates fortune before the splits. We are just too far from the center of wealth to attract…

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May 2021 as ALS Awareness Month

…THEREFORE I, DAVID Y. IGE, Governor of the State of Hawaii, do hereby proclaim May 2021 as “ALS AWARENESS MONTH” in Hawaii and encourage citizens of the Aloha State to join me in raising awareness of ALS, support the efforts to combat the disease, and honor the patients and families who are demonstrating extraordinary resilience and resourcefulness while living with ALS….

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MAY 2021 as ALS Awareness and Families Appreciation Month

We look back with fondness to the time when we were able to gather to celebrate May as OUR month. This coming May is the second during this time of Covid pandemic. Hawaii, like most states in the continental US is still under restrictions for public health security. Thus, our normally highly participated celebratory events are going to be just as quiet like last year’s. However, our efforts at bringing awareness to the community are no less robust and has…

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Her Words, Not Mine

Part of our mission is making people aware about what life with ALS is like for both patient and his family. Prior to the pandemic, I was regularly invited to speak before groups, opportunities which I rarely refuse. I have been a nurse educator all my life and have tried every way of presenting material so it becomes vivid to my audience, so that they come away more understanding of the material. When I come short of that expectation, I…

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Show Your Stripes: Rare Disease Day

I wonder if people are even aware that there is such a community. Probably not; until just a few years ago, our Katherine introduced me to a lady who advocates for this group. I even remember being interviewed, with Katherine, for Olelo to shed light on two of the more than 7,000 illnesses that are considered rare. Katherine talked about glioblastoma and I discussed ALS. Katherine could have covered both – since two of her brothers had rare diseases AND…

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Rita Melville Alarcon: “… Breastless” But SO MUCH more!

In 2015, Rita’s mom, Patricia, started experiencing slurred speech and progressive weakness. Living in Hawaii while her children were in the mainland, Patricia kept her health concerns to herself. When she could no longer keep it a secret, her disability had gone much further along.  When they learned, Rita and her siblings flailed around in shock. Eventually, they were able to negotiate among themselves the best way they could care for Mom, considering many factors, not the least of which…

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