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.
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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.