A SUPER-powered WP Engine Atlas Test Site

Joe&#039;s Atlas Experimentation Site

The <a href="https://www.mda.org/">Muscular Dystrophy Association</a> (MDA) is marking its seven-decade partnership with the International Association of Fire Fighters (IAFF) with this year’s launch of <a href="https://filltheboot.donordrive.com/index.cfm?fuseaction=donorDrive.event&amp;eventID=546">Fill the Boot</a>, a nationwide yearlong fundraising campaign supporting research, care, and advocacy for people with neuromuscular disorders such as <a href="https://alsnewstoday.com/what-is-als/">amyotrophic lateral sclerosis</a> (ALS). National Boot Day is April 13.
Since 1954, firefighters have hit the streets with boots in hand to raise some $700 million to date for the MDA, which supports people with <a href="https://musculardystrophynews.com/what-is-muscular-dystrophy/">muscular dystrophy</a>, ALS, and related conditions.
The goal this year is $2 million, which will continue to support the organization’s mission to empower those with neuromuscular disease to live longer, more independent lives.
“Traditions are at the heart of the fire service, and the IAFF is proud to celebrate 70 years of ‘Fill the Boot’ campaigns across the United States,” Edward Kelly, IAFF general president, said in a <a href="https://www.globenewswire.com/news-release/2024/04/10/2860775/0/en/International-Association-of-Fire-Fighters-Affiliates-Launch-Fill-the-Boot-Fundraisers-Nationwide-for-Muscular-Dystrophy-Association.html">press release</a>. “Since 1954, our partnership with Muscular Dystrophy Association has advanced breakthroughs in treatments and access to care for families living with neuromuscular diseases. Awareness, research, and support are vital in this fight, and we will continue responding to the call until cures are found.&#8221;
Supporters may <a href="https://filltheboot.donordrive.com/index.cfm?fuseaction=register.start&amp;eventID=546">register</a> for the campaign or <a href="https://filltheboot.donordrive.com/index.cfm?fuseaction=donorDrive.donate&amp;eventID=546">donate</a> online and use the MDA-IAFF <a href="https://firefighters.mda.org/">Fill the Boot locator</a> to find fundraisers nearby. Participating firefighters may <a href="https://forms.office.com/pages/responsepage.aspx?id=GIjAaRdcmkSXkLYKPH5SIptaXvMHAtNCoORSn2N5PV9UQUo1UFNCRExRNFRITzRUUFM1TjVTOUJUUiQlQCN0PWcu&amp;web=1&amp;wdLOR=cF357FD21-8ADA-4222-BDFC-B9FEEF21E126">register their collection dates</a> and order needed supplies.
[recommended-reading id=89869]
<h3>Booting up for ALS</h3>
The longstanding partnership began just four years after the <a href="https://www.mda.org/about-mda/history">MDA’s founding in 1950</a>, with an IAFF proclamation designating the nonprofit as its chosen charity and a pledge to raise awareness and funds until cures are discovered.
“In our journey to end neuromuscular disease, firefighters remain steadfast allies in our mission,” said Donald S. Wood, PhD, MDA president and CEO. “This is a historic American philanthropic partnership. Over the decades, IAFF’s commitment to ‘Fill the Boot’ has galvanized communities to support tangible outcomes, including more than 20 FDA-approved treatments, the growth of the only national network of multidisciplinary care centers, and free summer camp experiences for thousands [of] children with neuromuscular disabilities. As we lead promising medical advances in genetic medicine, the tradition of IAFF support in neighborhoods from coast to coast remains invaluable.&#8221;
The <a href="https://www.mda.org/summer-camp">MDA Summer Camp</a> gives children with neuromuscular disorders opportunities to engage in activities from zip-lining and swimming to dancing and horseback riding. The camps are held nationwide at no cost to families.
The Fill the Boot campaign has <a href="https://musculardystrophynews.com/news/mda-fill-the-boot-campaign-raise-funds-labor-day-weekend/">helped to advance care</a> through the Muscular Dystrophy Association’s <a href="https://www.mda.org/care/mda-care-centers">National Care Center Network</a>, a group of more than 150 healthcare institutions across the nation. It has also helped fund MDA community education and recreation, support, and advocacy.
The Washington, D.C.-based IAFF represents more than 330,000 full-time firefighters and paramedics, members of more than 3,500 affiliate organizations. As a whole, association members serve more than 85% of communities in the U.S. and Canada.
The campaign will be shared on social media channels using the hashtag #FillTheBoot.

It’s year 70 for ‘Fill the Boot’ MDA fundraisers nationwide

Is it feasible to remotely collect health data from people with <a href="https://alsnewstoday.com/what-is-als/">amyotrophic lateral sclerosis</a> (ALS)? And would doing so help in gauging disease progression among patients?
That&#8217;s what a remote observational study called ALS Go-Digital is now trying to assess.
If validated, the approach could pave the way to fully remote decentralized clinical trials that require little to no travel to study sites. That potentially could significantly increase the number of patients who are willing or able to participate in clinical studies, which, in turn, may accelerate <a href="https://alsnewstoday.com/approved-treatments-for-als/">treatment</a> development.
The ongoing research study, launched in September, is a collaboration between the <a href="https://www.mda.org/">Muscular Dystrophy Association</a> (MDA) and <a href="https://www.mt-pharma-america.com/">Mitsubishi Tanabe Pharma America</a> (MTPA), which markets the ALS therapies <a href="https://alsnewstoday.com/radicava-edaravone-for-als/">Radicava</a> and Radicava ORS.
&#8220;We are excited to be collaborating with Mitsubishi Tanabe Pharma America on this important study,&#8221; Sharon Hesterlee, PhD, chief research officer at the MDA, said in a <a href="https://www.mda.org/press-releases/mda-announces-collaboration-with-mitsubishi-tanabe-pharma-america-for-remote-digital-technology-research-study-for-amyotrophic-lateral-sclerosis-als">press release</a>, adding, &#8220;This could save countless hours and valuable resources which participants must spend at research sites, when they could be spending time with loved ones.”
[recommended-reading id=75938]
<h3>Study tapping into MOVR database to improve remote assessments</h3>
For its part, MTPA said it&#8217;s &#8220;proud&#8221; to work with the U.S.-based nonprofit on this study.
&#8220;MTPA has supported MDA in their work to empower those living with ALS for several years,&#8221; said Yasutoshi Kawakami, MTPA president.
&#8220;Patients are at the forefront of everything we do, and I look forward [to] learning more about how remote data can help support those living with ALS and their caregivers,&#8221; Kawakami said.
ALS is a neurodegenerative condition marked by progressive muscle weakness, which renders patients less able to perform their regular daily activities over time. As the disease progresses, patients&#8217; ability to move on their own and travel also is impaired, so many are not able to participate in clinical trials that require constant in-person monitoring.
Remote assessments could provide an alternative for these patients, enabling more people to participate and posing less of a burden — even for those willing and able to travel long distances to a clinical site.
However, to date, many measurements collected remotely are still not validated as good alternatives to in-person assessments performed by a neurologist.
The researchers in this study aim to address that, with a goal of validating such measurements and determining the best method of data collection for tracking disease progression at a patient&#8217;s own home.
[quote=&#8221;center&#8221;]Repurposing the data collected by MOVR during regular clinic visits lays the foundation to validate and increase acceptance of outcomes for fully remote, decentralized ALS clinical trials, which require little to no travel time on the part of participants.[/quote]
The study is recruiting 75 people from the 2,000 ALS patients currently enrolled in the MDA&#8217;s 10-year-old <a href="https://www.mda.org/science/movr">NeuroMuscular ObserVational Research</a> (MOVR) database, which gathers longitudinal data from patients&#8217; medical records during routine visits to <a href="https://www.mda.org/care/mda-care-centers">MDA Care Centers</a>. There are more than 150 centers across the U.S.
Over one year, digital devices will be used to monitor a number of measures, such as physical activity and sleep, <a href="https://alsnewstoday.com/als-symptoms/">ALS symptoms</a>, and changes in hand and finger dexterity.
Fitbit smartwatches will be used to track daytime physical activity and sleep patterns. The fine motor function of participants&#8217; hands and fingers will be assessed by a proprietary MTPA-developed smartphone app called ALS HANDS. Finally, an app-based electronic Clinical Outcomes Assessment platform will monitor ALS symptoms using self-reported, gold-standard ALS measurements.
This remote data will be paired with the clinical data gathered in the MOVR database to determine if the digital measures are accurate enough to replace some of the clinical measures that are currently employed.
&#8220;Repurposing the data collected by MOVR during regular clinic visits lays the foundation to validate and increase acceptance of outcomes for fully remote, decentralized ALS clinical trials, which require little to no travel time on the part of participants,&#8221; Hesterlee said.

New study testing feasibility of remote data collection for ALS trials

Renowned neurologist and <a href="https://alsnewstoday.com/what-is-als/">amyotrophic lateral sclerosis</a> (ALS) investigator Merit Cudkowicz, MD, of Massachusetts General Hospital has been named this year&#8217;s recipient of the <a href="https://www.mda.org/">Muscular Dystrophy Association</a> (MDA) Legacy Award for Achievement in Clinical Research.
The award, which recognizes outstanding accomplishments in neuromuscular research, will be presented March 20 at the 2023 MDA Clinical and Scientific Conference in Dallas.
<a href="https://www.mdaconference.org/">Registration</a> is open for in-person and virtual attendance of the March 19-22 event, which this year will focus on emerging technologies in genetic medicine.
[recommended-reading id=81739]
&#8220;We at the Muscular Dystrophy Association are extremely proud to honor Dr. Cudkowicz with the 2023 MDA Legacy Award for Achievement in Clinical Research,&#8221; Sharon Hesterlee, PhD, chief research officer at MDA, said in a <a href="https://www.mda.org/press-releases/mda-announces-recipient-of-2023-mda-legacy-award-for-achievement-in-clinical-research-is-merit-cudkowicz-md-msc-renowned-neurologist-and-clinical-researcher-in-als">press release from the organization</a>.
&#8220;Dr. Cudkowicz&#8217;s work throughout her career has been innovative and has led to incredible progress in our ability to test new therapies for ALS efficiently through clinical platform trials to accelerate treatments. Through her collaboration with researchers, medical teams, and patients at the center of it all, her work has inspired hope and the development of new therapies,&#8221; she said. &#8220;We&#8217;re proud to have been a supporter of her work since she was a fellow, and to continue to support our shared vision for a world without ALS.&#8221;
The award will be presented by Cudkowicz&#8217;s long-time mentor Stanley H. Appel, MD, a researcher and neurologist who serves as the director of MDA&#8217;s <a href="https://www.mda.org/care/mda-care-centers">ALS Care Center</a> at Houston Methodist Neurological Institute.
&#8220;It&#8217;s an honor for me to receive the 2023 MDA Legacy Award for Achievement in Clinical Research, particularly at the MDA Clinical &amp; Scientific Conference in front of the global neuromuscular community. I&#8217;m grateful as well to have this presentation by one of my mentors, Dr. Stan Appel,&#8221; Cudkowicz said. &#8220;I received my very first grant from the Muscular Dystrophy Association, and Stan reviewed the first grants I ever wrote in ALS — and both have supported me throughout my career.
&#8220;I&#8217;m grateful for the continued commitment and dedication to finding a cure for ALS by the Muscular Dystrophy Association and for this recognition of the work we&#8217;re doing to accelerate treatments and find a cure to end this devastating disease.&#8221;
<h3>Innovations in ALS treatment</h3>
Director of the Sean M. Healey &amp; AMG Center for ALS, Cudkowicz is chief of neurology at Massachusetts General Hospital and is the Julieanne Dorn professor of neurology at Harvard Medical School. She is one of the founders and a previous co-chair of the Northeast ALS Consortium, a group of more than 134 clinical sites globally conducting collaborative ALS investigations.
Through innovations, Cudkowicz has helped accelerate development <a href="https://alsnewstoday.com/als-treatment/">ALS treatments</a>, including <a href="https://alsnewstoday.com/ionis-sod1-rx-biib067/">tofersen</a>, the first antisense oligonucleotide therapy for ALS associated with SOD1 mutations. She also has helped develop adaptive clinical trial designs and is principal investigator of the Clinical Coordination Center for <a href="https://neuronext.org/">NeuroNEXT</a>.
In addition, Cudkowicz <a href="https://alsnewstoday.com/news/first-patients-enrolled-pivotal-healey-als-platform-trial/">launched</a> the <a href="https://clinicaltrials.gov/ct2/show/NCT04297683?term=HEALEY&amp;draw=2&amp;rank=1">HEALEY ALS Platform Trial (NCT04297683)</a>, the first clinical trial in ALS testing multiple treatment candidates simultaneously with a goal of accelerating the development of therapies.
A mentor to many young neurologists in the field of ALS, Cudkowicz received an undergraduate degree in chemical engineering from the Massachusetts Institute of Technology, and a medical degree from Harvard Medical School.
&#8220;The Healey &amp; AMG Center for ALS at Mass General Hospital has worked collaboratively with MDA since the day we were formed and every advance in ALS has come with the support of MDA, including critical support of our clinic for multidisciplinary care, personalized care for patients and families, support for the Northeast ALS Consortium and innovative support for platform trials in ALS for patients,&#8221; said Cudkowicz. &#8220;This award helps shine a spotlight on our mission to accelerate how treatments are developed and find cures for people with ALS.&#8221;

Tag: MDA

It’s year 70 for ‘Fill the Boot’ MDA fundraisers nationwide

New study testing feasibility of remote data collection for ALS trials

ALS researcher Merit Cudkowicz to receive MDA legacy award