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On June 3, the Greater Chicago Chapter of the <a href="https://www.als.org/">ALS Association</a> will host its <a href="https://secure2.convio.net/alsa/site/TR?pg=informational&amp;fr_id=15349&amp;type=fr_informational&amp;sid=7502">2023 Chicago Walk to Defeat ALS</a> fundraiser, with an aim of supporting patients and families living with <a href="https://alsnewstoday.com/what-is-als/">amyotrophic lateral sclerosis</a> (ALS).
The 1.5-mile event will <a href="https://alsnewstoday.com/news/als-association-chapters-raise-funds-one-goes-to-bat-against-disease/">again take place</a> at Cantigny Park in Wheaton, Illinois. Funds raised through the Sunflower Field of Dreams-themed walk — the sunflower is the chapter&#8217;s official symbol — will support vital services provided to the ALS community in the greater Chicago area.
Specifically, monies will go to caregiver education, support groups, an equipment lending program, ALS multidisciplinary clinics, and more. So far, more than $263,000 has been raised toward this year&#8217;s goal of $550,000.
&#8220;The Chicago Walk to Defeat ALS is more than just a walk; it&#8217;s a powerful community event that brings hope and raises funds to combat Amyotrophic Lateral Sclerosis (ALS), also known as Lou Gehrig&#8217;s disease,&#8221; the nonprofit stated in a <a href="https://www.prnewswire.com/news-releases/grand-slam-for-a-great-cause-walk-to-defeat-als-at-cantigny-park-on-june-3rd-301829878.html">press release</a>.
&#8220;By participating in the Walk, you are making a significant impact on the lives of individuals and families facing this devastating neurodegenerative disease,&#8221; the organization said.
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<h3>Monies raised in ALS fundraiser stay in Chicago area</h3>
Participants may <a href="https://secure2.convio.net/alsa/site/TR?fr_id=15349&amp;pg=entry">register for the event</a> online or by contacting the organization at 312-932-0000. Walkers may join a team or go solo. Check-in for the free family-friendly event — aimed at patients and supporters of all ages — opens at 8 a.m. and the walk will begin at 10 a.m.
In addition to supporting the ALS Association&#8217;s Greater Chicago Chapter, the <a href="https://secure2.convio.net/alsa/site/SPageServer/?pagename=WLK_landing">nonprofit&#8217;s signature fundraiser</a> offers an opportunity to come together with friends, family members, colleagues, and others to support the ALS community. The event also seeks to heighten ALS awareness.
&#8220;This year, we invite you to step into a Sunflower Field of Dreams as we come together to support those affected by ALS,&#8221; the organization stated.
While there is no fundraising minimum, those who raise at least $90 for the ALS Association will receive an exclusive event T-shirt. Those raising more than $300 also will earn a long-sleeved shirt with the organization&#8217;s theme logo.
[quote align=&#8221;center&#8221;]This year, we invite you to step into a Sunflower Field of Dreams as we come together to support those affected by ALS.[/quote]
An hourlong <a href="https://youtu.be/8GOyxLVD-ng">webinar about the event</a> is available, and the chapter will provide pledge sheets, social media tools, and other resources. Those who are unable to make the June 3 event are encouraged to participate in a chapter &#8220;<a href="https://secure2.convio.net/alsa/site/TR/Walks/Chicago?sid=11730&amp;type=fr_informational&amp;pg=informational&amp;fr_id=15349">Mini-Walk</a>&#8221; — which can be done anywhere, at any time, and for any distance.
&#8220;As we gather in the Sunflower Field of Dreams, we celebrate the vibrant symbol of the sunflower, which embodies strength, resilience, and hope &#8211; qualities that mirror the spirit of our ALS community,&#8221; the organization notes. &#8220;Inspired by the legacy of Lou Gehrig, who courageously faced ALS in 1939, the Sunflower Field of Dreams represents our collective dream of a world without ALS.&#8221;
For more information, send an email to kendra@alsachicago.org.

This year’s Chicago Walk to Defeat ALS set for Wheaton’s Cantigny Park

<a href="https://cytokinetics.com/" rel="nofollow">Cytokinetics</a> has awarded $20,000 grants to five patient advocacy organizations, including two serving the <a href="https://alsnewstoday.com/what-is-als/">amyotrophic lateral sclerosis</a> (ALS) community, under its fifth annual Communications Grant Program.
Each grant is intended to support the nonprofit&#8217;s <a href="https://alsnewstoday.com/news/als-patient-groups-others-encouraged-apply-cytokinetics-grants/">outreach, engagement, and awareness efforts</a>, allowing the organizations to broaden their work in underserved and other communities, launch educational programs, and help patients with access to disease conferences.
Grant recipients were the Boston, Massachusetts-based <a href="https://neals.org/">Northeast Amyotrophic Lateral Sclerosis Consortium</a>, or NEALS, and the <a href="https://webpa.alsa.org/site/PageServer?pagename=PA_homepage">ALS Association Greater Philadelphia Chapter</a>, and three organizations focused on people living with heart failure and hypertrophic cardiomyopathy.
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<h3>Groups recognized for &#8216;meaningfully&#8217; addressing patient and caregiver needs</h3>
“We are continuously impressed by the quality of proposals we receive, and this year’s recipients were particularly impactful, reflecting the unique needs of the patient communities they serve,” Mary Pomerantz, Cytokinetics’ senior director of patient advocacy and engagement, said in a <a href="https://www.globenewswire.com/news-release/2023/01/30/2597451/35409/en/Cytokinetics-Announces-Recipients-of-Its-Fifth-Annual-Communications-Grant-Program.html">company press release</a>.
“As more in-person gatherings resume this year, along with digital connections, we are pleased to support these valuable communications initiatives to bring enhanced awareness to and meaningfully address the unmet needs of patients living with heart failure, HCM, and ALS and their caregivers,” she added.
NEALS, an academic research consortium, works to swiftly translate scientific discoveries into clinical testing and, potentially, into new therapies for those with ALS and motor neuron disease.
It will use the funds to develop and put in place a pilot program called the ALS Clinical Research Communication and Outreach Tour, building upon existing education and awareness efforts with in-person visits to underserved ALS communities across the U.S.
The ALS Association Greater Philadelphia Chapter plans to put its award toward more and better educational communications, via new professional videos, targeted mailings, and website upgrades.
The chapter, which serves about 1,200 ALS patients and their families in eastern Pennsylvania, Delaware, and south and central New Jersey, wants to make patients and caregivers more aware of the family assistance it offers, and of ALS in general to support earlier diagnosis and treatment initiation.
Other grant recipients are the HeartBrothers Foundation, Mended Hearts, and the WomenHeart: the National Coalition for Women with Heart Disease.
Cytokinetics&#8217; program focuses on advocacy organizations working in ALS, hypertrophic cardiomyopathy, and heart failure. A call for 2024&#8217;s grant applicants will be announced this fall.
The biopharmaceutical company is developing <a href="https://alsnewstoday.com/ck-2127107/">reldesemtiv</a> to slow muscle function decline in people with ALS.
A ongoing Phase 3 clinical trial, <a href="https://clinicaltrials.gov/ct2/show/NCT04944784?term=reldesemtiv&amp;draw=2&amp;rank=1">COURAGE-ALS (NCT04944784)</a>, is evaluating oral <a href="https://alsnewstoday.com/news/analyses-support-design-courage-als-trial-testing-reldesemtiv/">reldesemtiv&#8217;s safety and efficacy</a>, against a placebo, over 24 weeks in up to 555 adults, ages 18 to 80, recently diagnosed with ALS. It is currently <a href="https://clinicaltrials.gov/ct2/show/NCT04944784#contactlocation">recruiting eligible patients</a> at sites in North America, Europe, and Australia, and it is expected to conclude in March 2024.
Those who complete COURAGE will be able to enter its <a href="https://alsnewstoday.com/news/new-als-study-reldesemtiv-investigating-longer-term-safety-efficacy/">open-label extension study</a> called <a href="https://clinicaltrials.gov/ct2/show/NCT05442775">COURAGE OLE (NCT05442775)</a>, where all will be given the experimental therapy for about one year. They also could have the option of enrolling in a compassionate use program, allowing them to continue treatment pending reldesemtiv’s potential regulatory approval.

Tag: ALS Association chapter

This year’s Chicago Walk to Defeat ALS set for Wheaton’s Cantigny Park

Cytokinetics’ Communications Grants Awarded to 2 ALS Groups