FACT Relief, Quiet Hero Party bring needed ALS awareness, support
My family is grateful for efforts to assist patients and caregivers
On Feb. 17, a party was thrown in Atlanta, Georgia, in celebration of ALS patients and their caregivers. It was a chance to promote awareness about the ongoing needs of the victims of this treacherous and unrelenting disease.
A party for ALS? Why not?
Like the Ice Bucket Challenge, the ninth annual Quiet Hero Party displayed both sides of the ALS journey: the tragedies and the triumphs; the victims and the victories; the burdens and the blessings.
Upon hearing about the $200 million or so raised by the Ice Bucket Challenge, I called for some of that money to be given to affected families. Care for an ALS patient can cost as much as $150,000 per year, an unthinkable amount for most people to accommodate.
Little did I know that, in partnership with the Quiet Hero Party, the organization FACT Relief does just that. FACT Relief, which stands for Families and Communities Together Relief, gives direct grants to ALS patients and others facing injury or disability to help with their medical expenses. Please watch the informative video at the organization’s website to learn more about their work.
A delicate balance
Our family was one of two recognized at this year’s Quiet Hero Party, and even though I couldn’t attend, my wife, Sylvia, spoke on our behalf. My daughter and other family members were there as well.
It is comforting to know that organizations understand the importance of raising funds for individuals in addition to cures. Oftentimes the victims get lost in the hoopla of fundraising events. When the excitement ends for the participants, ALS sufferers go back to the harsh reality of physical, psychological, and financial struggle.
Something is disconcerting about the delicate balance between finding a cure and providing comfort to the victims. I know it’s a difficult task, and I truly appreciate all of the organizations and people who support families and search for answers.
Getting back to the Quiet Hero Party, it was a fantastic affair. My wife showed me a video of portions of it and I await more from my daughter and others.
I was impressed by the organizers and the professionalism in how they produced the event. The warmth and sincerity in that room were palpable. I know it was a relaxing occasion because of how easily my wife took to the stage.
Despite being unsure if she could do it — public speaking is not her forte — she did an outstanding job. I am so proud of her for stepping out of her comfort zone. Maybe being an ALS spokesperson is in her future.
Kudos to FACT Relief for throwing a great party and thanks for inviting us. Here’s to next year’s party, and more importantly, the valuable work you do throughout the year.
Note: ALS News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of ALS News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to ALS.
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Comments
Doris Sutherland
So enjoyed the Quiet Hero Party article. Atlanta, GA, has it going on for pALS. I’m a caregiver for my husband, and I know firsthand how treacherous this disease is. My husband was diagnosed on September 13, 2022, but symptoms started maybe 10 years ago. His physical abilities have gradually declined, mostly his speech. He’s in a wheelchair now but I’m so grateful that his last pulmonary and swallowing test have remained unchanged for the past 3 months. pALS and their caregivers are living, what seems like, a nightmare sometimes. But it’s the support from ALS friendly organizations, family, friends and caring people that make the difference in a good day and a terrible day. I’m so thankful for the help we have received since his diagnosis. It ain’t easy but it could be far worse. Hang in there pALS and caregivers.
Chris DeVito
James,
I ran across your blog and was reading your column about the Feb. 17th Hero Party.
I read that you said your wife got up and spoke at the event. Getting out of her comfort zone.
Well this is what I am going to have to do next week as my husband was invited to a "Blue Tie Gala" an event hosted by the Phi Delta Theta Ohio Mu of Ashland Ohio University. This fundraiser is put on annually to benefit the "Live Like Lou Foundation which focus on a cure for ALS.
My husband is no longer able to speak and although we could type in his speech and play it on his TobiDynovac, I feel that I should get up and say some words as well.
Would you ask your wife if she would be willing to share her speech with me. I would love an example of what to say.
God Bless you and Thanks for sharing your life's trials and journey as you go through the Life of ALS
Sincerely Yours,
Chris DeVito
Ben Mattheis
Thank you James for your consistently uplifting commentary. Those of us the continue to hold ALS at bay continue to be inspired by your example!V