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I love learning about all the great activities happening during <a href="https://alsnewstoday.com/news/fundraising-advocacy-focus-this-years-als-awareness-month-us/">ALS Awareness Month</a>, but I also worry that we’re attracting the attention of unscrupulous health advocates and clinics who target vulnerable <a href="https://alsnewstoday.com/what-is-als/">ALS</a> patients and their families. My health-fraud antenna is on high alert.
Spending 30 years managing the <a href="https://alsandwellness.blogspot.com/2016/05/cam-wellness-als-and-wellness.html">first hospital-based complementary and alternative medicine center</a> in Iowa helped me fine-tune the skill of knowing if a therapy was legitimate or not. If there was valid research confirming the benefits of an alternative therapy, we were allowed to offer it. Thus, I learned how to read research documents inside and out.
Lately, I’ve seen an increasing number of nontraditional <a href="https://alsnewstoday.com/approved-treatments-for-als/">ALS treatments</a> that claim to be legitimate being offered. After flying under the radar for years, these dodgy health advocates have built professional websites and offer webinars, newsletters, and more, just to sell their “cures” to unsuspecting ALS patients.
[recommended-reading id=83422]
<h3>Why are we so vulnerable?</h3>
It’s a loss of trust in the medical system, and I’ve felt it, too. When I noticed my walking was off balance, and after a few falls, I visited my doctor. I had always trusted my doctors to tell me what was wrong, how to fix it, and when I could get back into the swing of life.
After going through an arduous <a href="https://alsnewstoday.com/als-diagnosis/">diagnosis</a> process, my doctor told me it was ALS. But there’s still no prevention or cure, and it might be a long time before scientists discover one.
Like many ALS patients, I felt like the rug was pulled out from under me. The same feelings of shock surface when we’re told the ebbs and flows of <a href="https://alsnewstoday.com/symptoms-of-als/">symptom progression</a> make it difficult to create a long-term medical plan. We’re told, “Let’s wait and see if anything changes in a couple of months.”
This is where many patients feel frustration and desperation. Their body clock is ticking and they can’t wait months or years. They need help now and they tell themselves, “By golly, I’m going to find out how to fix it myself.”
<h3>Who shows up?</h3>
Ranging from well-intentioned health practitioners to totally unscrupulous “experts,” they offer a sense of hope to ALS patients that the medical world can’t compete with.
I’ve read the websites of practitioners who became passionate about a theory. Even though that theory was rejected by mainstream medicine, they found a way to open a business and offer their proposed treatment to desperate patients.
Then there are the totally dishonest businesses that don’t see patients as human beings but as dollar signs. Their online articles and testimonials sound convincing. They lead readers through a convoluted concept of basic nutrition, digestion, and physical science and hope to tap into patients’ beliefs that they can be miraculously cured.
I&#8217;ve been amazed to read that I supposedly have brain fungus, a leaky gut, liver disease, low chi, and my body is overflowing with toxins! I must be the healthiest feeling sick person ever.
Nevertheless, ALS patients have had their dental fillings removed, paid for expensive blood tests, and loaded their kitchen counters with vitamins and powders. It’s visual, it’s comforting, and patients convince themselves that they’re doing something.
<h3>How to avoid the health frauds</h3>
Let’s start with the fact that if and when a cure for ALS is discovered, you will not hear about it first on Facebook, Twitter, YouTube, or the spam folder of your email. It will, however, be plastered on the evening news and in mainstream media.
According to an ALS Association fact sheet titled &#8220;<a href="https://www.als.org/navigating-als/resources/fyi-be-careful-internet-user">FYI: Be a Careful Internet User</a>,&#8221; the third most common reason people use the internet is to seek health information. I encourage you to read this guide, which lists warning signs to look for when considering a form of treatment or therapy.
Another excellent resource is <a href="https://www.alsuntangled.com/">ALSUntangled</a>. This website lists proposed, current, and completed reviews for hundreds of alternative and off-label ALS treatments.
If you are considering any alternative or off-label treatment, always do a thorough research of the business, peer-published articles in respectable medical journals, online complaints, and so on. Again, if something sounds too good to be true, it probably is.
Enjoy the ALS awareness activities during the month of May and support authentic organizations and research facilities. Together we can help fund a cure for ALS and at the same time learn how to live well with it.
<hr />
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.

I’m promoting a different kind of ALS awareness this month

May has always been my favorite month of the year. Here in Maryland, the trees have filled in with lush green leaves, commercial crabbing boats have begun to quietly travel my small creek in the early dawn hours, and mallard ducks have returned to my yard. The evenings stay lighter longer, allowing for peaceful time to sit in my backyard and appreciate the calm that nature brings. May is the time of year when I feel most optimistic.
When I met my late husband, Jeff, I wasn’t at all surprised to learn that his birthday was in the middle of May. We always celebrated it with an event to welcome the warmer weather, most often a concert, bike ride, or boat trip.
<figure id="attachment_84198" aria-describedby="caption-attachment-84198" style="width: 380px" class="wp-caption aligncenter"><img loading="lazy" decoding="async" class="wp-image-84198 size-medium" src="https://alsnewstoday.com/wp-content/uploads/2023/05/boating-michigan-380x280.jpg" alt="A couple enjoys a boat trip on a lake in Michigan. The woman is leaning over for the photo and smiling, while her husband smiles at her. He's wearing a brimmed hat, glasses, and a life jacket over a pink shirt. We can't see what his wife is wearing, but she has long blondish-brown hair and hoop earrings." width="380" height="280" data-wp-pid="84198" /><figcaption id="caption-attachment-84198" class="wp-caption-text">Jeff and Juliet enjoy a boat trip in Michigan before Jeff&#8217;s ALS diagnosis. (Courtesy of Juliet Taylor)</figcaption></figure>
May is also <a href="https://www.als.org/awareness">ALS Awareness Month</a>, a time when many whose lives have been touched by <a href="https://alsnewstoday.com/what-is-als/">ALS</a> share stories and messages to raise the public profile of the disease. We do this to bring greater visibility to a condition that desperately requires additional research, funding, and advocacy so that we may continue our quest for effective <a href="https://alsnewstoday.com/approved-treatments-for-als/">treatments</a> and cures.
It’s also a time when many in the tightknit and welcoming <a href="https://alsnewstoday.com/forums">ALS community</a> choose to come together, both virtually and in person as our circumstances allow, to shine a light on the disease and ideally inspire others to join in our fight.
[recommended-reading id=83835]
Every day, I wish that ALS hadn’t entered our family’s life. Every life has rhythms and seasons of joy and sadness, and Jeff’s <a href="https://alsnewstoday.com/als-diagnosis/">ALS diagnosis</a> came at a time when our life was idyllic. We loved our home and our family and our life together, and Jeff was optimistically launching a new security consulting venture. We had so much to look forward to. His ALS diagnosis devastated us, our family, and our friends.
At the same time, I recognize that our time living with Jeff’s disease — not the disease itself — brought us some unexpected gifts. Our shared attitude of embracing every day, of finding joy in moments small and large, instilled in me a sense of permanent gratitude and wonder. Witnessing Jeff’s bravery in the face of fear taught me life lessons about strength, hope, and resiliency. And having Jeff trust me with his <a href="https://iamals.org/get-help/caregivers-start-here/">caregiving</a> was an honor that left me with a new appreciation for that role. Caregiving is a feat of herculean proportions that&#8217;s impossible to understand until you’re living it.
An equally important gift has been the ALS community and the people in it. Many choose to leave ALS behind them after their loved one has passed, and I respect this understandable choice. ALS is painful and devastating. In my case, staying connected with the ALS community has been healing and rewarding. Through these people, I’ve found, and given, empathy, support, compassion, and kindness.
On Wednesday, many of us in the ALS community <a href="https://iamals.org/alsindc-2023/">gathered at the National Mall in Washington, D.C.</a>, to plant more than 6,000 blue flags bearing the names of loved ones living with, or who have died from, this disease. Yesterday, we gathered amid those flags to speak publicly about our loved ones. The flags will remain at the Mall through Saturday to raise awareness of ALS among those visiting the city&#8217;s monuments. My next column will share details and photographs from the event.
Next week will mark three years since Jeff died here at home after a beautiful, warm, and sunny May weekend. We had celebrated his birthday the week before, and days earlier I&#8217;d begun a planned <a href="https://www.dol.gov/agencies/whd/fmla">family medical leave</a> from work so that Jeff and I could enjoy a long, peaceful summer together. When he took a turn for the worse the day after his birthday, our friends and family gathered that weekend to sit at his bedside, play classic rock music, and share stories.
After his death, we learned that he’d found time that weekend, even without a voice, to summon and talk with each of us privately and share his love, hopes, and wishes for us. I still marvel that he made this happen. Jeff died as he lived — resolute, strong, loving, reassuring, and always thinking of others first. He was in many ways a contradiction — stern yet soft, serious yet hilarious, quiet yet deeply powerful.
May is still my favorite month of the year, but for different reasons now. I still love the natural beauty of the month, and the optimism and joy that come with it. But May now also reminds me of Jeff, the month of both his birth and his far-too-soon death. May reminds me of the grace and love and connection within the ALS community and our collective desire to shine a light on it, to let those <a href="https://alsnewstoday.com/living-with-als-2/">living with the disease</a>, their families, and those grieving know they’re not alone.
<figure id="attachment_84197" aria-describedby="caption-attachment-84197" style="width: 380px" class="wp-caption aligncenter"><img loading="lazy" decoding="async" class="wp-image-84197 size-medium" src="https://alsnewstoday.com/wp-content/uploads/2023/05/national-mall-1-380x285.jpg" alt="Two men and two women stand together with their arms around each other's shoulders. They're all wearing the same dark gray T-shirt with the orange &quot;I Am ALS&quot; logo on the front. In the background, thousands of blue flags representing people with ALS are planted on a sprawling lawn." width="380" height="285" data-wp-pid="84197" /><figcaption id="caption-attachment-84197" class="wp-caption-text">Members of the ALS community gather in Washington, D.C., in May 2022. (Photo by Juliet Taylor)</figcaption></figure>
<hr />
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.

What the month of May now means to me

Recognized each May, ALS Awareness Month provides an opportunity for people living with <a href="https://alsnewstoday.com/what-is-als/">amyotrophic lateral sclerosis</a> and their families — as well as healthcare professionals, researchers, experts, and advocates — to increase awareness and education in the community at large, and to raise funds, all in the hope of ending ALS.
ALS Awareness Month has been observed in May in the U.S. <a href="https://www.presidency.ucsb.edu/documents/proclamation-6426-national-amyotrophic-lateral-sclerosis-awareness-month-1992">since 1992</a>. This year&#8217;s efforts will continue to unite and support those living with the neurodegenerative disease, which is estimated to impact around <a href="https://rarediseases.org/rare-diseases/amyotrophic-lateral-sclerosis/">30,000 people</a> in the U.S., with about 5,000 new cases being diagnosed each year.
Globally, ALS affects approximately <a href="https://pubmed.ncbi.nlm.nih.gov/31797084/">four per 100,000 individuals</a>, and the numbers are on the rise, partly due to an aging population worldwide.
But ALS awareness isn’t only about the statistics, so ALS News Today is using this year&#8217;s awareness month to highlight the stories of people living with the progressive neurological disorder. Its new campaign, “ALS Community Spotlight,” will focus on these individuals and their hopes, struggles and treatments, and overall quality of life.
The project will give people the opportunity to raise awareness about what life is like with ALS, to highlight the charitable organizations that support them, and to raise funds for continuing research into treatments.
[recommended-reading id=83581]
<h3>MDA to host wide range of ALS Awareness Month events</h3>
The <a href="https://www.mda.org/">Muscular Dystrophy Association</a> (MDA), a nonprofit that has advocated for more than 70 years for people living with neuromuscular diseases, has planned multiple educational and fundraising events throughout May.
A five-week virtual education program, starting May 4, will feature keynote speaker Doreen Ho, MD, a neurologist at the Sean M. Healey and AMG Center for ALS at Massachusetts General Hospital, in Boston. Ho will speak about recent research and promising clinical trials for ALS.
The virtual learning series will offer sessions on research updates and ongoing clinical trials, physical therapy and adaptive equipment, respiratory care, and financial planning. There also will be a drug development roundtable and an ALS caregiver panel run by a mental health nurse.
“MDA’s strategic focus on ALS research has led, directly or indirectly, to the development of [five] approved treatments for ALS &#8230; but we’re not stopping there,&#8221; Donald S. Wood, PhD, MDA&#8217;s president and CEO, said in a <a href="https://www.globenewswire.com/news-release/2023/04/24/2652746/0/en/Muscular-Dystrophy-Association-Announces-Programming-for-ALS-Awareness-Month.html">press release</a>.
The latest disease therapy, Qalsody (tofersen), was granted approval in the U.S. earlier this month for ALS associated with mutations in the SOD1 gene.
&#8220;We are connecting people with ALS to clinical trials through our <a href="https://www.mda.org/care/mda-care-centers">MDA Care Center Network</a>, where cutting-edge research is combined with multidisciplinary care. At the same time, our advocacy team has helped get the historic ACT for ALS signed into law,&#8221; Wood said.
Several other MDA events are slated for May:
<ul>
<li>A golf fundraising event, called the <a href="https://www.globenewswire.com/Tracker?data=B0oBbqlY4yOEbHOz3ESom0v6x8I14XJPOpQDJAuWZ_BwGlt7ZpwwTVpRKCfTAlVzpYP6QEkMM-WYCbSyMXuC3MfQDV2Ohs_UIaShc9H2e9m7vI48mfwXw8me_Cz4PWAaS26rLRlhB6tWoTz_Aw_d1Q==">Arizona Golf Classic,</a> will take place May 4 at the McCormick Ranch Golf Club in Scottsdale. It will feature &#8220;Beat the Pro,&#8221; a golf ball launch, and event swag.</li>
<li>A May 19 fundraising event will be held in partnership with the Dutch Bros Foundation. Funds will be donated to the MDA for each drink sold during the Drink One for Dane event. The program will be announced May 15.</li>
<li>Led by the MDA Advocacy Institute, a <a href="https://mdausa.webex.com/webappng/sites/mdausa/meeting/register/ca250f6cbba14e5e9e70381946f40272?ticket=4832534b00000006c8bf09b0bc8767e3b8ccd1f53b5093a15b3f47128867a28120cc1008b9e19faf&amp;timestamp=1682694106599&amp;RGID=r217ded54413e17b3537789edadc679e6">discussion on legislation</a> to improve care and funding for the ALS community and key ALS programs will be held May 24.</li>
<li>A fundraising dinner called <a href="https://one.bidpal.net/wows/welcome?utm_source=sfmc&amp;amp=">Wings Over Wall Street</a>, to be held at the Hotel Edison&#8217;s The Rooftop at Edison&#8217;s Ballroom, in New York City, will happen on June 1. The event has raised nearly $13 million to fund ALS research over the past 23 years.</li>
<li>An in-person educational <a href="https://www.mda.org/care/community-ed/engage-symposiums/2023/new-jersey">MDA Engage symposium</a> will be held in Princeton, New Jersey, on June 3. It will be chaired by Matthew Harms, MD, a medical consultant at the MDA and a professor of neurology at Columbia University.</li>
</ul>
The MDA also will honor Lou Gehrig Day, June 2, by engaging with the community at Major League Baseball games across the country. Events are being planned with the Boston Red Sox, Washington Nationals, and Arizona Diamondbacks.
[recommended-reading id=41001]
<h3>Events to be held nationwide in May</h3>
Another advocacy organization, <a href="https://iamals.org/">I Am ALS</a>, will be placing <a href="https://iamals.org/action/join-us-for-our-als-awareness-month-event/">6,000 flags</a> on the National Mall in Washington, D.C., from May 10 to 13, to mark ALS Awareness Month. The flags will each bear the name of a person <a href="https://alsnewstoday.com/living-with-als/">living with ALS</a> or lost to the disease, or an individual who is an ALS gene carrier.
During the event, I Am ALS also plans to share stories told by community members, meet legislators, and educate the public about ALS.
Meanwhile, chapters of the <a href="https://www.als.org/">ALS Association</a> also are hosting a <a href="https://www.als.org/get-involved/events">number of events</a> in May. Among them are a horse-racing event and a culinary gala:
<ul>
<li>The <a href="https://www.als.org/wisconsin/events/2023-als-hope-derby-gala">2023 ALS Hope Derby Gala</a> on May 6, in Milwaukee, Wisconsin, aims to unite the community and raise money for ALS. It will tie in to the 149th running of the Kentucky Derby.</li>
<li>The <a href="https://alsasd.ejoinme.org/MyEvents/8thAnnualALSFiesta/tabid/1352763/Default.aspx">ALS Fiesta</a>, occurring May 10 in Valley Center, California, will honor the work of caregivers. It&#8217;s being dubbed as &#8220;FIESTA: an evening to benefit the ALS Association,&#8221; and will feature ALS advocate and caregiver Sarah Trott as the guest speaker.</li>
<li>The 14th annual <a href="https://e.givesmart.com/events/vIX/">Bite Nite</a> culinary gala, hosted by the ALS Association Arizona Chapter on May 20 in Tucson, will raise funds and awareness for ALS while showcasing unique foods and live music.</li>
<li>On May 20, the association&#8217;s Evergreen Chapter, which serves Washington, Idaho, Montana, and Alaska, will host a <a href="https://alsa-ec.ejoinme.org/MyEvents/2023TogetherWeAreGala/tabid/1337994/Default.aspx">Together We Are&#8230; Hope, Courage, Love</a> gala. To be held in Woodinville, Washington, the event will feature a dinner and aims to raise awareness about ALS. It will be live streamed for those who cannot attend in person.</li>
</ul>
The second annual <a href="https://www.mascreations.com/hope-lives-art-for-als?fbclid=IwAR2ry_kefV0D2p475_sHqV8CY9bax-bbxIA4UQKtwmLrddL-CYNiTVtMS_8">Hope Lives: Art for ALS</a> will run at the San Francisco Women Artists Gallery from May 2 to 26. The exhibit will showcase 11 artists featuring ceramic sculpture, collage, mixed media, and paintings. A portion of the proceeds from the art sales will be donated to the ALS Association’s Golden West Chapter. The event, now in its second year, was launched by the sister of an ALS patient.
The <a href="https://lesturnerals.org/">Les Turner ALS Foundation</a>, based in the Chicago area, uses ALS Awareness Month to rally around those living with the disease, and to raise funds and awareness. It encourages participation in the <a href="https://www.lewblondrun.org/">Lew Blond Memorial 5K Walk/Run</a>, to be held this year on May 20, in Northbrook, Illinois, and the <a href="https://lesturnerals.org/events/walk-for-life/">ALS Walk For Life</a>.
[recommended-reading id=77109]
<h3>New films about ALS highlight patient journeys</h3>
The <a href="https://www.als.net/alsfilmfest?fbclid=IwAR2_F36oAF3KSE2DNV_XBQqWukomwNlaUhgJPr8Mmc-4_0yEKnx0kdls_N8">Fight ALS Film Festival</a> also is upcoming, with weekly online showings in May followed by panel discussions. The events are hosted by the <a href="https://www.als.net/">ALS Therapy Development Institute</a> (ALS TDI), a drug discovery lab, the advocacy group <a href="https://heralsstory.org/">Her ALS Story</a>, and the biotechnology company <a href="https://brainstorm-cell.com/">BrainStorm Cell Therapeutics</a>.
Week one features an extended trailer for the documentary <a href="https://goonbebravefilm.com/">Go On, Be Brave</a>, about Andrea Lytle Peet&#8217;s attempt to become the first person with ALS to complete a marathon in all 50 U.S. states. Other films include Augie, It’s Not Yet Dark, From the Passenger Seat, and Mind Over Matter.
Independent Television Service&#8217;s film <a href="https://itvs.org/films/matter-of-mind-my-als?fbclid=IwAR3Nr1vgR_5aCwV6xsfUAzXLXHbT861LmH8hCAuA5v4DJ6XOLXfc0NFbrhY">Matter of Mind: My ALS</a>, showing on PBS on May 1, also will feature three people living with ALS as they make complicated choices over the course of their disease&#8217;s progression. Part of the Independent Lens series, the film follows the African-American architect Phil Freelon, former mechanic Charlie Wren, and communications director Michele Stellato.
Finally, <a href="https://www.targetals.org/">Target ALS</a> will hold its <a href="https://www.targetals.org/research/annual-meeting/">annual meeting</a> May 3-5 both in Boston and virtually. Attended by scientists, academics, venture capitalists, and others, it offers networking about the state of ALS research.
Together, advocates say, this month&#8217;s awareness initiatives can help to advance knowledge about ALS — and move closer to a cure.
&#8220;We will continue to work alongside families, guided by a vision of a world without ALS,” the MDA&#8217;s Wood said.

Tag: ALS Awareness Month

I’m promoting a different kind of ALS awareness this month

What the month of May now means to me

Fundraising, advocacy are focus of this year’s ALS Awareness Month