“There’s an old joke, um … two elderly women are at a Catskill mountain resort, and one of ’em says, ‘Boy, the food at this place is really terrible.’ The other one says, ‘Yeah, I know — and such small portions.’ Well, that’s essentially how I feel about life: full of loneliness, and misery, and suffering, and unhappiness, and it’s all over much too quickly.”
That is how the lead character Alvy Singer set the stage with the opening narrative in the 1977 film “Annie Hall.” It is also a fair representation of my occasional reaction to life with ALS. While my existence can, at times, be unappetizingly distasteful, I always crave more of it. And so do others facing analogous circumstances.
When I first approached ALS News Today about the possibility of becoming a content contributor, I was asked to submit two items: a writing sample and a proposed byline. My writing was deemed acceptable, my initial suggested column header was not. I attributed the reaction to “Playing Dodgeball With Death” as being too edgy, or macabre.
Four months later, the person who onboarded me died at the age of 30. Serena Lawrence, unbeknownst to me, had been battling pulmonary veno-occlusive disease. The sad news, coupled with the awareness of Serena’s disease state, caused me to rethink the appropriateness of my original idea for a theme title. Perhaps it was not judged as over-the-top. Maybe it was only presumptuously myopic.
Serena, no doubt, was engaged in her own personal juking, ducking, and rolling in an all-out effort to avoid the salvos fired her way from the hands of the Grim Reaper. Like me, she must have thrown her own volleys back, as best she could. In fact, similar war-game scenarios are played out by many of the staff of ALS News Today’s parent company, BioNews. As is the case with anyone suffering from a rare disease.
Feb. 28 is Rare Disease Day.
The U.S. Orphan Drug Act of 1983 defined any disease affecting fewer than 200,000 people as rare. Also called “orphan diseases,” once designated, there is market exclusivity, tax credits, and guidance from the U.S. Food and Drug Administration to be had for firms targeting those illnesses. Per the National Organization for Rare Disorders (NORD), more than 7,000 rare diseases affect up to 30 million Americans. That equates to nearly 10% of the population. No wonder that on every page of the NORD website these words can be found: “Alone we are rare. Together we are strong.”
The main objective of Rare Disease Day is to raise awareness about these afflictions and their impact on people’s lives. Both the general public and decision-makers are targeted, in the hope that enough constituents will rally behind the effort to eliminate these rare diseases, one orphan at a time.
To that end, an abundance of opportunities for engagement are in place for this year’s Rare Disease Day. Anyone whose world is touched by rare disease — be they a patient, caregiver, healthcare worker or researcher — are potential participants.
NORD is sponsoring “show your stripes,” an initiative to showcase the rare disease community via a variety of forums. They also promote the Rare Action Network, which anyone can join. By perusing their state-by-state registry, one can learn what events are planned around the country on or around Rare Disease Day.
NORD is not the only organization investing in the occasion. BioNews is hosting a virtual Rare Disease Day event on Feb. 27. The aim is to foster transparent dialogue relative to the topics of mental health, resiliency, and self-care, specific to the rare disease challenge. The Muscular Dystrophy Association is holding a rare disease policy issues webinar on Feb. 25.
If, by chance, anyone is reading this and does not have the cloud of a rare disease darkening their life, you can still be involved. I invite you to adopt an “orphan.” NORD maintains a database of over 1,200 rare diseases. Pick one. Read about it. Mention it to a friend. Become knowledgeable enough to spot advocacy causes that favor our community. Move the needle.
Of course, if you are sufficiently inspired and have the means, consider a financial stake. As the ALS Therapy Development Institute website states, “ALS is not an incurable disease — it’s an underfunded one.” The same can be said for every other rare disease. No doubt your “orphan” has a charitable association offering support to those in need. Or, if you’d rather paint with a broader brush, NORD also accepts donations.
It’s long overdue. The moment is now to improve the quality of cuisine, even if it’s only one “rare” kitchen at a time. Bon appetit!
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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