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I’m not a big believer in making New Year’s resolutions. There’s something that feels bad about setting a goal that’s lofty — learning a new language is one of my perennial favorites, for example — and then not accomplishing it. Plus, I keep a daily to-do list that includes some small self-improvement items, and I work regularly, and with mixed results, to attain those.
As a <a href="https://www.als.org/navigating-als/for-caregivers">caregiver</a> for my late husband, Jeff, I also came to learn over time (and often the hard way) to be kinder to myself, to show myself some grace in what I could and could not reasonably accomplish. Caring for a loved one with a terminal illness is an act of grace unto itself and while it’s the most meaningful thing I’ve ever done, I found it very hard both physically and emotionally.
For all of these reasons, I haven’t thought about New Year’s resolutions in a very long time. But this year I’ve decided to catalog some specific goals for myself as they relate to <a href="https://alsnewstoday.com/what-is-als/">ALS</a>.
<h3>Build my network of ALS community through volunteering</h3>
Before Jeff was <a href="https://alsnewstoday.com/als-diagnosis/">diagnosed with ALS,</a> I did not often volunteer my time. I’d occasionally donate blood or participate in an organized activity through work, but volunteering wasn’t part of my daily life. When Jeff became ill, I felt overwhelmed, isolated, and scared, and realized that I needed to connect with other caregivers and families living with ALS. That led me to the then-newly formed <a href="https://www.iamals.org/">I AM ALS</a>, where I have found a true home and the chance to get and give support through building and participating in community events.
One of the most rewarding for me is participating as a speaker or moderator on <a href="https://www.iamals.org/action/request-a-panel/">Tim Lowrey ALS Panels,</a> named for my friend Tim Lowrey, who created them. These events are complimentary speaking panels that our team delivers to colleges and community organizations to help them learn about the disease.
I AM ALS is the group I found, but there are literally dozens of <a href="https://www.youralsguide.com/resource-list.html">organizations</a> both small and large that rely on volunteer time and expertise to thrive. While I did not have time to volunteer much, if at all, while caregiving, I have found that doing so while grieving and healing is deeply meaningful.
[recommended-reading id=36240]
<h3>Strengthen my support for people living with ALS and caregiving</h3>
When Jeff was diagnosed, a few complete strangers reached out to me. They had lost a parent or spouse to ALS, and instinctively understood the shock and bewilderment Jeff and I were feeling. These new friends were a lifeline to me — from calling to check on me or stopping by to bring me a nice-smelling body scrub, to answering my scariest, most personal questions.
Now, more than three years after Jeff’s death, it feels natural to want to do this for others. <a href="https://www.als.org/navigating-als/living-with-als">Living with ALS</a> can be lonely, and I learned firsthand what a difference it makes when someone who understands reaches out with empathy and kindness to help. I am far from alone in this; so many of my friends in the ALS community are those who have lost a spouse, parent, sibling, or best friend and want to help others feel less alone. Volunteer groups, once again, are a valuable way to meet others to <a href="https://www.iamals.org/get-help/">get or give support</a>.
<h3>Raise money for a cure</h3>
I’m terrible at asking for money and would have made a horrible salesperson, although, recalling my teenage years, my parents would surely disagree. However, when it comes to raising money for ALS it’s much easier because it will take many millions of dollars to further the groundbreaking science currently underway to end it.
This year, I signed on to participate in the <a href="https://www.nyrr.org/races/2023/unitedairlinesnychalf/">United Airlines New York Half Marathon</a> to raise money for the <a href="https://www.als.net/">ALS Therapy Development Institute</a>. This was one of the most memorable aspects of my year. I raised a sum higher than I’d endeavored to do before, and met my goal. On a 28-degree morning in March, I joined a team of other participants in New York to traverse 13.1 miles through Brooklyn and Manhattan, ending in Central Park. I’m not a natural runner and I walked nearly the entire course, but I finished the race. Most importantly, our team raised a significant sum for ALS TDI, and it felt great.
I won’t make any other New Year’s resolutions this year. I’ll keep plugging away at my personal growth in areas like building my fitness, learning new skills and growing as a person. But it feels good to have some specific plans to help end ALS, and to support people living with it and their families.
Thank you for reading my column this year. I wish you and your loved ones a peaceful and happy 2024.
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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 <a href="https://alsnewstoday.com/approved-treatments-for-als/">treatment</a>. 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.

Restarting New Year’s resolutions with 3 goals for the ALS community

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.
[recommended-reading id=84422]
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

I love inspirational quotes and sayings. Throughout my life, I’ve stumbled upon passages from books or snippets of speeches from public figures and recognized them as a helpful way for me to understand or think about a current challenge in life. In some cases, they’ve served as mantras — easy to recall, and empowering to think about when I need to draw on inner strength.
Before my late husband, Jeff, was <a href="https://alsnewstoday.com/als-diagnosis/">diagnosed with ALS</a>, I had a framed quote in my kitchen that read, “Do one thing every day that scares you.” <a href="https://alsnewstoday.com/columns/facing-fears-als-show-us-whats-important/">Facing fears</a> made me feel strong, vigorous, and healthy until Jeff’s diagnosis, when I discovered that strength is internal, and emotional health can be just as important as physical health — if not more. I retired that quote and haven’t displayed it since.
After Jeff died in May 2020, my first instinct was to put as much distance between me and <a href="https://alsnewstoday.com/what-is-als/">ALS</a> as possible. ALS wasn’t Jeff; it didn’t define him, and I didn’t want this cruel disease to define the memories of our life together. What I quickly realized was that I missed the ALS community that had so fiercely supported us, our hopes, and our quest for <a href="https://alsnewstoday.com/approved-treatments-for-als/">treatments</a> and cures. And so, I returned.
[recommended-reading id=84255]
Today, my favorite mantra is one you’ve likely seen or heard before: “Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it is the only thing that ever has.” This quote by the late American anthropologist <a href="https://anthropologyreview.org/influential-anthropologists/margaret-mead-anthropologist/">Margaret Mead</a> inspires and drives many of us in the tightknit ALS community.
While some might view us as relatively few compared with other disease communities, we are mighty. The ALS community comes together to celebrate wins like the passage of <a href="https://www.fda.gov/news-events/public-health-focus/accelerating-access-critical-therapies-als-act-act-als">new legislation</a> and <a href="https://www.fda.gov/news-events/press-announcements/fda-approves-new-treatment-option-patients-als">approval of drugs</a>, share sorrows when we lose a member of our group, support those newly diagnosed and their families, and provide love and support however we best can.
There are many worthy ALS organizations with which to align; I volunteer with <a href="https://iamals.org/">I Am ALS</a>, a grassroots advocacy organization. Due to our geographic distance from one another and the challenges of travel with ALS, most of our encounters take place virtually, via video call. I Am ALS has, among others, <a href="https://iamals.org/action/">teams</a> for veterans, legislative affairs, community outreach, and even a writers’ group, and we meet weekly via Zoom. Occasionally, though, we&#8217;re able to connect in person.
Last week was one such week.
<h3>A rare and special gathering</h3>
For several days, many members of the <a href="https://alsnewstoday.com/columns/i-am-als-community-provide-vital-support/">ALS community</a> gathered on the National Mall in Washington, D.C., for advocacy, awareness, and fellowship. <a href="https://weartv.com/news/local/northwest-florida-woman-travels-to-washington-dc-to-raise-awareness-for-als">Volunteers planted 6,000 small blue flags</a> on a grassy spot of land in the shadow of the Washington Monument. There, we held a rally featuring numerous speakers, mostly friends and loved ones <a href="https://alsnewstoday.com/living-with-als-2/">living with ALS</a>, their families, and caregivers.
<figure id="attachment_84489" aria-describedby="caption-attachment-84489" style="width: 380px" class="wp-caption aligncenter"><img loading="lazy" decoding="async" class="wp-image-84489 size-medium" src="https://alsnewstoday.com/wp-content/uploads/2023/05/Flags-10-380x285.jpg" alt="A grassy lawn in front of the Washington Monument features 6,000 small blue flags planted in rows, representing people with ALS." width="380" height="285" data-wp-pid="84489" /><figcaption id="caption-attachment-84489" class="wp-caption-text">Six thousand flags on the National Mall in Washington, D.C., represent people diagnosed with ALS each year. (Photo by Juliet Taylor)</figcaption></figure>
Each talk was moving. Speakers shared their hopes, their tears and laughter and resolve, their feelings about our collective progress in seeking treatments and cures, and what greater access to <a href="https://alsnewstoday.com/experimental-treatments-for-als/">new drugs and trials</a> has meant to them. And to be sure, we reaffirmed that we have much more work to do, and much more progress to make. In fact, immediately following the rally, most attendees headed directly to <a href="https://www.als.org/advocacy/als-caucus">Congress</a>, where they’d set up meetings with legislators.
Amid the blue flags, there was so much hugging and genuine joy at seeing one another. There were selfies and inside jokes about <a href="https://twitter.com/boaflouncer">feather boas</a> and grammar. There were impromptu social gatherings and celebrations. There also were quiet, somber walks through the thousands of blue flags, each one representing someone loved who is living with, or has passed from, ALS.
Perhaps most hopeful of all, new connections were made. New connections can invigorate us and help us to help others.
I find this is how the ALS community works. We make a single phone call, or hug, or email, or social media outreach, and before long, we&#8217;re surrounded and buoyed by compassion, understanding, and support. As someone who hadn&#8217;t previously been involved in volunteerism and advocacy, I am each day deeply moved by my friends in what we call “ALS Land.” We agree that none of us asked or wanted to be in this club, yet the love we’ve found here is sustaining and irreplaceable. Last week on the National Mall, that love was on full display.
If you or a loved one are living with ALS and would like greater support and community, please reach out to any <a href="https://www.cdc.gov/als/OrganizationsthatSupportPALS.html">ALS organization</a> until you find one that feels like home. We are here to welcome you, and we hope to see you in Washington, D.C., next May.
<figure id="attachment_84438" aria-describedby="caption-attachment-84438" style="width: 380px" class="wp-caption aligncenter"><img loading="lazy" decoding="async" class="wp-image-84438 size-medium" src="https://alsnewstoday.com/wp-content/uploads/2023/05/als-restaurant-380x380.jpg" alt="Seven people stand in a row with their arms around each other's shoulders. They're all wearing a T-shirt that says &quot;I Am ALS&quot; on the front in orange lettering, and they appear to be standing inside a restaurant." width="380" height="380" data-wp-pid="84438" /><figcaption id="caption-attachment-84438" class="wp-caption-text">Friends in the ALS community meet for lunch during a day of advocacy. (Courtesy of Juliet Taylor)</figcaption></figure>
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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: ALS community

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How hope is everywhere when our community gathers

Why last week was special in the ALS community