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This past Sunday dawned crisp and cool on the eastern shore of Maryland, with a hint of light rain falling from a few clouds dappled against an otherwise vivid blue sky. I dressed to be outdoors, making sure my orange <a href="https://iamals.org/action/request-a-panel/">Tim Lowrey Panel</a> T-shirt was visible under my jacket, and set out for the morning.
As I pulled into a parking lot just outside downtown Centreville, a family walking by pointed at my license plate, which reads END <a href="https://alsnewstoday.com/what-is-als/">ALS</a>, and cheered. I smiled back, excited, and parked my car, joining the dozens of other people walking and wheeling toward a field at the Route 18 Park.
We were all gathered for the <a href="https://www.als.org/dc-md-va/events/walk-defeat-als-chesapeake-bay">ALS Association’s Walk to Defeat ALS Chesapeake Bay</a>, an event to build awareness and raise funds. It brought several hundred community members together to reiterate our shared commitment to finding <a href="https://alsnewstoday.com/experimental-treatments-for-als/">ALS treatments</a> and cures. Though the cause is serious, the atmosphere on Sunday was celebratory; we were all together and united in taking action toward our shared goal of ending ALS.
And community is what this walk was all about. As I approached the large, grassy field where the <a href="https://www.als.org/dc-md-va">ALS Association</a> had assembled tents and a stage, I immediately saw friends I knew, teams of supporters in colorful T-shirts, and walk participants in power wheelchairs and on foot. I saw teams with dogs, with young babies in strollers, and with kids on their shoulders. I was instantly happy that I’d joined; the feelings of love and hope were palpable.
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I was walking to support my friend Tim’s team. He was walking in memory of his wife, Mary Ann, who died from ALS on New Year’s Day in 2019. Upon arriving, I met one of her cousins along with a dearly loved caregiver, who were there supporting and remembering Mary Ann as well.
Because I wanted to share Sunday’s experience in this week’s column, I started exploring the grounds after I greeted Tim and his team, saying hello to other participants. That&#8217;s when I was reminded of the true power of this community. As I introduced myself and asked about those participants&#8217; stories, I got (and gave) hugs to total strangers and had the chance to hear about their journeys and share mine. I met people <a href="https://alsnewstoday.com/living-with-als-2/">living with ALS</a>, family caregivers, their lifelong friends, and others who are united in their devotion to keep our loved ones alive.
<h3>Why I remain active in the community</h3>
One might think that after losing <a href="https://alsnewstoday.com/columns/how-als-muscle-weakness-made-my-husband-stronger/">my late husband, Jeff</a>, to ALS in 2020 that I’d want nothing more to do with the disease. Many surviving loved ones don&#8217;t, and that&#8217;s a choice I understand and respect.
In my case, however, healing is the reason I and so many thousands of others who&#8217;ve lost our loved ones stay in the fight. It gives me a sense of purpose and meaning to stay active in the <a href="https://alsnewstoday.com/forums">ALS community</a>, helping to advocate for awareness, treatments, and cures as well as to support others with ALS and their families. There&#8217;s nothing so meaningful to me as spending time with those who understand the ALS journey.
<a href="https://www.als.org/blog/is-als-really-that-rare#:~:text=With%20a%20prevalence%20rate%20(number,identified%20as%20a%20rare%20disease.">ALS is considered a rare disease</a>, but in my opinion, it’s really not. Ask most people, I find, and they&#8217;ll know someone who&#8217;s living with or has died of ALS. Still, it’s not often that groups of us who&#8217;ve been affected by ALS have the opportunity to be together. When we are, I&#8217;ve found the atmosphere is comforting and kind, full of recognition and understanding. I think that’s one reason that Sunday felt so special.
The trait we all had in common that day, and every day, is shared hope. The ALS community is full of individuals from all backgrounds and walks of life, and what unites us is our fervent belief — and willingness to support one another — in ending a disease that takes so much from so many.
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Note: <a href="https://alsnewstoday.com/">ALS News Today</a> is strictly a news and information website about the disease. It does not provide medical advice, <a href="https://alsnewstoday.com/als-diagnosis/">diagnosis</a>, 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.

How hope is everywhere when our community gathers

A widely used saying in the English lexicon, &#8220;Hope springs eternal,&#8221; was coined by the poet <a href="https://www.goodreads.com/quotes/10692-hope-springs-eternal-in-the-human-breast-man-never-is">Alexander Pope</a> to simply suggest that <a href="https://alsnewstoday.com/columns/clinical-trial-brought-meaning-hope-als-fight/">hope</a> is always available to us. It means a great deal to patients with rare, fatal diseases and our loved ones to know that hope is ever-present in our lives.
<a href="https://alsnewstoday.com/what-is-als/">ALS</a> is a condition that tests hope. Because it relentlessly attacks the body, from time to time, we may be tempted to do what Dante ominously wrote in his &#8220;Divine Comedy&#8221;: &#8220;Abandon all hope ye who enter here.&#8221;
When I was <a href="https://alsnewstoday.com/als-diagnosis/">diagnosed</a>, I almost abandoned hope because of the doctor&#8217;s nonchalant manner. I thought I&#8217;d be gone in six months. So the first lesson in hope can be taught in how the doctor breaks the news.
Other lessons include the knowledge that someone is working on our behalf to find answers to our dilemma, the encouragement, the support from family and friends, the access to other ALS patients via <a href="https://alsnewstoday.com/forums/">support groups</a> and online meetings, and the manner in which we live our lives.
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A major reservoir of hope resides in the U.S. Food and Drug Administration, the U.S. Department of Veterans Affairs, and the legislative branch of our government. If not approved by authoritative entities, all advances and <a href="https://alsnewstoday.com/experimental-treatments-for-als/">possible remedies for ALS</a> will continue to languish in limbo. Trials, new <a href="https://alsnewstoday.com/approved-treatments-for-als/">treatments</a>, and funds are essential to ALS patients&#8217; hopes and must be accelerated.
Since I just made a reference to my last column (&#8220;<a href="https://alsnewstoday.com/columns/urgent-call-funding-als-research-patient-support/">Sending out an SOS for ALS advocacy and support</a>&#8220;), let me reemphasize two words I used in that piece: initiate and sustain. Efforts that could lead to positive outcomes must be started and continued. ALS victims can take a lot of hope from that.
ALS patients and those who have similar diseases have two basic choices: We can elect to maintain our hope, or we can abandon all hope. I have chosen the former, but I certainly understand why others choose the latter. This is a horrible disease. It can kill the patient and the caregiver. With hope, however, we can find a modicum of solace, even just day to day.
With hope there is abundance; without hope there is scarcity. With hope there is work; without hope there is complacency. With hope there is peace; without hope there is chaos. With hope there is delight; without hope there is disdain. With hope there is strength; without hope there is faintness.
This column is not just for victims of ALS, but for their families as well. Do everything you can to assure one another that you still have the power of hope, even when things are at their lowest point.
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Note: <a href="https://alsnewstoday.com/">ALS News Today</a> 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.

Tag: Hope

How hope is everywhere when our community gathers

The power of hope for those affected by ALS