Enhancing Access and Continuity of Care for People Living With ALS

Team Gleason has provided over $20 Million in adventure, technology, equipment, and care services to over 30,000 people living with Amyotrophic Lateral Sclerosis (ALS) and countless others through advocacy, support, and, ultimately, bringing an end to the disease. Team Gleason, through its diverse and broad-reaching programming, brings assistive technology, equipment, and robust support services into the hands of ALS patients – with a goal of helping people with ALS not just survive but thrive after a devastating diagnosis.

With the support and partnership from the ALS Finding a Cure and the Leonard P. Rizzuto Foundation, Team Gleason will have the opportunity to provide critical assistance for more people with ALS than ever before. For people living with ALS and other neurodegenerative diseases, mobility becomes a significant issue. Team Gleason provides portable power wheelchairs to the ALS community, but with this grant, we will be able to double that number at no cost to the patient. These wheelchair models are designed with portability and convenience for users and are more compact and portable than traditional larger power wheelchairs.

A Nationwide Network of Compassionate and Financial Resources for Families Living with ALS

In 2009 I watched my dad slowly lose his ability to walk, talk, swallow, and breathe before taking his last breath 18 months after being diagnosed with ALS (Lou Gehrig’s Disease). I’m one of 7 children, and my dad was a veteran, so we had all we needed to take care of him at home. Not long after my dad passed, a good friend’s husband was diagnosed with ALS; by the time he passed away, she was financially devastated. My first thought was, “How do people do this alone?” Taking care of an ALS patient is a 24/7 job. “Where do people turn that can’t afford home care or have to quit their jobs to take care of their loved ones?” When I looked, there were very few resources available for financial assistance and many only helped a specific geographical area. I decided what better way to honor my dad than by helping other

families dealing with this horrible disease, especially those that had no family to support them. We would be their family.

Hark-ALS was formed in memory of my dad, Charlie “Hark” Dourney. To date, we have raised $3 million to provide financial assistance to ALS patients and their families. ALS is often referred to as the “bankruptcy disease” as the cost of caring for an ALS patient at home can exceed $200,000 a year. Our goal is to ease the financial burden for the patient and his or her support system. We provide a myriad of resources including purchasing Hopemobiles© wheelchair accessible vans, securing medical equipment for patients not covered by insurance, providing financial assistance for household expenses and home modifications for wheelchair accessibility, paying travel expenses for ALS patients to visit family, helping families with children during the holidays, and much more. We are one of the few organizations that does this across the country. For more information and to view our documentary, Hope on the Horizon, please visit www.hark-als.org.

Growth for ALS Care in the United States

Compassionate Care ALS (CCALS), a nonprofit located in Falmouth, Massachusetts, currently works with more than 1,500 ALS families in all 50 states and multiple foreign countries. CCALS provides resources including equipment, educational opportunities, Medicare assistance, communication assistance, guidance and awareness with regards to living with ALS, caregiving, and exploring end-of-life when invited, all at no cost to families across the United States. Funding from ALSFAC WE CARE will allow CCALS to provide Glide Care G-5 Lightweight Foldable Electric Wheelchair to many more families than we currently do as well as staffing to deliver, install and train families on use of this piece of equipment.

Mobility Matters Program

ALS Ride For Life was built on one powerful belief: no one should face ALS alone. What began as a small, community-driven effort has grown into a movement fueled by compassion, connection, and an unwavering commitment to those impacted by this devastating disease.

Behind every ALS diagnosis is a person with a story, a family navigating the unimaginable, and a future suddenly filled with uncertainty. ALS Ride For Life exists to stand beside them—raising critical funds for research, increasing awareness, and providing meaningful support to patients and their loved ones.

At our core, we are a patient-driven organization—focused not only on the future, but on helping people today. While we remain committed to advancing the search for a cure, we are equally dedicated to providing immediate resources, programs, and support that make a meaningful difference in the daily lives of those living with ALS.

Every event, every initiative, and every act of generosity helps carry this mission forward. It is a reminder that even in the face of ALS, there is strength in community, hope in action, and power in coming together.

Overview:

ALS Finding a Cure^® is pleased to announce a Request for Proposals (RFP) to support innovative research projects leveraging Artificial Intelligence (AI) and Natural Language Processing (NLP) to advance ALS discovery. This funding opportunity seeks to catalyze transformative research that integrates AI-driven methodologies to improve diagnosis, biomarker identification, disease progression modeling, and therapeutic target discovery in ALS.

Background:

ALS is a devastating neurodegenerative disease with no cure and limited therapeutic options. AI and NLP offer the potential to revolutionize ALS research by enabling the extraction of meaningful insights from complex datasets, including electronic health records (EHRs), published medical literature, clinical trial data, omics datasets, and real-world patient-reported data. Through this RFP, we aim to support high-impact projects that will enhance our understanding of ALS and accelerate novel therapeutic strategies.

Examples of large data sources include but are not limited to:
Answer ALS, ALS Compute, UK Bio Bank. ProACT, NeuroBank, Project MINE

Scope of the RFP:

We invite applications proposing AI and/or NLP-based approaches to address critical challenges in ALS research. Areas of interest include, but are not limited to:

• Drug Discovery and Repurposing: Machine learning-based identification of potential ALS drug targets or repurposed therapies using AI-driven drug screening techniques.
• Biomarker Discovery and Validation: Integration of AI/NLP with multi-omics, imaging, and patient-reported outcomes to identify and validate ALS biomarkers.
• AI-Driven Early Diagnosis: Use of AI and NLP for automated extraction of early clinical features from EHRs, speech and language analysis, or fluid biomarker or imaging data to improve early detection of ALS.
• Pathomechanistic Knowledge Graphs: Integration of NLP tools with the published medical literature for discovery of previously underappreciated mechanistic targets.
• Disease Progression Modeling: AI-based analysis of longitudinal clinical and /or biomarker data to enhance prediction models for disease progression and stratification of patients.
• Optimizing Clinical Trials: AI-powered patient stratification, automated NLP-based extraction of clinical endpoints from records, virtual comparison groups and trial recruitment optimization.

Data Subtypes: Use of AI technology to separate ALS from Controls and to find ALS subtypes in the Answer ALS data set by combining clinical, biomarker, genetic and motor neuron omics data.

Eligibility Criteria:

• Open to researchers at academic, medical, and research institutions worldwide.
• Multidisciplinary and collaborative proposals integrating AI/NLP expertise with ALS clinical or biological research are encouraged.
• Prior AI/NLP experience is not required, but partnerships with computational experts are recommended.

Pharmaceutical & Clinical Collaboration: Synergistic collaboration between industry and institutions with data-driven models encouraged

Funding and Award Information:

• Grant Duration: Up to 2 years
• Funding Amount: Up to $400,000 USD total (inclusive of both direct and indirect costs)
• Number of Awards: 3 awarded teams
• Indirect Costs: Maximum of 15%

Application Timeline:

• Initial Letter of Interest (LOI) Submission Deadline: Friday May 23, 2025
• Notification of LOI Submission: July 2025
• Full Proposals Due: Wednesday August 6, 2025
• Project Start Date: Wednesday October 1, 2025

Review Criteria:

Proposals will be evaluated based on:

1. Scientific Merit and Innovation: Potential of AI/NLP methodologies to transform ALS research.
2. Feasibility and Approach: Strength of study design, methodology, and data integration strategy.
3. Investigative Team: Expertise and collaborative potential of the research team.
4. Translational Potential: Likelihood of findings contributing to improved ALS diagnostics, treatments, or patient outcomes.

How to Apply:

Application Process

This will be a two-step process. Applicants will first submit a formal Letter of Interest. Selected applicants will then be asked to submit a full proposal if chosen.

1. First Step – Letter of Intent:

Letter of Intent should be max 2 pages in length and include the following:

• • Proposal Title
  • Team’s highlighted experience
  • Brief overview of project
  • Expected Outcomes

2. Second Step – Expanded Application

• If Letter of Interest is accepted, you will be asked to provide a cover letter addressed to ALS Finding a Cure and the Leandro P. Rizzuto Foundation including:
  • Proposal Title
  • Total costs (15% overhead cap)
  • Number of milestones and related costs (to equal amount above)
  • List of all investigators and institutions
  • Name and contact information for person(s) responsible for contracts
  • Address for mailing of payments
• Provide a study plan including:
  • A brief abstract suitable for media release to the lay public if the application is successful
  • Project Plan, Background, and Timeline (max. 5 pages) including:
  • Study background and rationale/significance
  • Study objectives/specific aims
  • Supporting/preliminary data;
  • Experimental design/research plan;
  • Source of data and confirmation of access;
  • Detailed itemized budget and budget justification
  • Description of study milestones, including the costs associated and timeline of specific deliverables
  • Any research funding from other funding sources that relates to the proposed work
• Signed and dated investigator CVs
• Financial Disclosure Form: use either NIH form https://ethics.od.nih.gov/forms450 ), or institutional form.

Submit LOI to: https://app.box.com/f/33b7d67838bb4bc987eb5e65686411ea

Please submit questions to info@alsfac.org

ALS Finding a Cure^® is committed to supporting cutting-edge research that will drive meaningful advancements in ALS discovery through AI and NLP.

Our Pals for pALS Community Connect Program

One of the greatest wishes of our founder, Kevin Gosnell, after launching ALS ONE and united research and care—and before losing his battle to ALS just 14 months after his diagnosis—was to build a compassionate, connected community for those impacted by the disease. He envisioned a network where individuals living with ALS, those who had lost loved ones, and supporters could come together to uplift one another, easing the journey with shared understanding, support, and even moments of joy.

Our Pals for pALS program brings this vision to life by creating a structured way for our incredible community to connect. While many of these relationships have formed organically, this initiative provides an accessible platform to foster even deeper connections.

Pals for pALS is unique in its kind, uniting families currently navigating ALS with a vast network of resilient, kindhearted individuals who have faced the challenges of the disease firsthand. Whether through offering guidance, emotional support, help with chores, or simply being a companion along the journey, participants share their experiences to ensure that no one faces ALS alone.

Additionally, this program strengthens bonds among those affected—whether individuals with ALS, caregivers, children, or extended family members—helping them find solace in shared experiences. By alleviating isolation and providing meaningful support, Pals for pALS creates a true community of care, compassion, and connection.

We are so grateful to have been named a recipient of the ALSFAC We-Care grant to help expand this program to help all and ensure that no one travels the ALS journey alone.

www.alsone.org

Hope Loves Company (HLC) is a nationally recognized nonprofit that provides support, resources and community to children who have or had a loved one with ALS. We give children and young adult caregivers the tools they need to navigate grief, find joy, and remain hopeful.

Recognizing a gap in support services for young caregivers, Jodi O’Donnell Ames founded HLC to provide critical emotional and educational resources for children and young adults. HLC’s focus is to offer mental health and educational support and caregiving resources through free, year-round, nationwide programs, including Camp HLC, Hugs of Hope, Beyond the Bunk hangouts and more.

To learn more:

Hope Loves Company – Together is Better

Hope Loves Company – About Us