NEALS Committees

Advanced Practice Provider (APP) Committee

Chairs: Jourdan Milliard (email hidden; JavaScript is required), Julia Yasek (email hidden; JavaScript is required) and Gabriela Lopes (email hidden; JavaScript is required)
The mission of the APP committee is to foster an environment of learning and growth for APPs serving as clinicians and investigators at the forefront of ALS Care and Research, while evaluating and developing guidelines to improve the care of people with ALS (pALS).

BIG Data Committee

Chair: Alex Sherman (email hidden; JavaScript is required)
The goal of Big Data Committee is to introduce new pathways to capture, aggregate, harmonize, distribute and analyze ALS-related information. Some of the important topics this committee discusses and contributes to are discovery of new data sources, development of new platforms and tools, as well as Common Data Elements, data harmonization, and incentive models for research collaboration and data contribution, consumption, analyses and publishing.

Biorepository Committee

Chairs: Robert Bowser (email hidden; JavaScript is required) and Terry Heiman-Patterson (email hidden; JavaScript is required)
NEALS has established a repository of biofluids collected from numerous clinical trials and clinical research studies. The Biorepository Committee is responsible for the oversight of this repository and the distribution of biofluids and tissues to investigators for scientific research purposes. An on-line application for samples is available at the NEALS website. The Biorepository Committee reviews all applications and judges the potential impact of the study, research design and the investigator. Priority is given to NEALS investigators. Should the committee raise concerns with an application, the applicant is contacted to address the concerns before approval of an application. Publications generated by the use of the repository samples should acknowledge the NEALS Biorepository as the source of samples, and the applicant is advised to further acknowledge or provide co-authorship to the PI of the study that collected the biofluid or tissue samples.

Bulbar Committee

Chair: Gary Pattee (email hidden; JavaScript is required)
The aim of this committee is to investigate and understand the pathology, clinical implications and best treatment strategies of Bulbar MND, including the development of speech and swallowing biomarker parameters throughout disease progression.

FTD/FALS Committee

Chairs: Claire Flaherty-Craig (email hidden; JavaScript is required) and Matthew Harms (email hidden; JavaScript is required) Rita Sattler (email hidden; JavaScript is required)
The FTD/FALS working group focuses on clinical care, research, and clinical trials for these genetic and phenotypically defined subsets of ALS. Given the overlap of ALS and FTD in the most common form of fALS, there are many shared areas of interest between fALS and FTD. The FTD/FALS working group promotes treatment advances in ALS by building on existing relationships with all ALS/FTD researchers, toward the common goal of applying evidence based research to advance clinical treatment.

Imaging Committee

 Erik Pioro (email hidden; JavaScript is required) and Suma Babu (email hidden; JavaScript is required)
The goals of the Imaging Committee are to advance imaging in ALS by standardizing data acquisition parameters between interested NEALS sites and by developing a NEALS Imaging Core of sites ready to participate in multicenter neuroimaging studies. The committee’s main focus is on the discovery, standardization, and application of imaging biomarkers within the scope of ALS drug development and clinical trials. This committee strives to complement the ongoing European/International efforts (NiSALS) and will closely collaborate with related NEALS committees and task forces.

Nutrition Committee

Chairs: Andrea Charvet email hidden; JavaScript is required, Stephanie Dobak (email hidden; JavaScript is required) and Polina  Vorobeychik (email hidden; JavaScript is required)

The Nutrition Committee is committed to advancing interdisciplinary collaboration and conducting innovative research to optimize nutrition care for individuals living with Amyotrophic Lateral Sclerosis (ALS). By harnessing the expertise of diverse professionals including dietitians and other healthcare professionals, we strive to develop comprehensive approaches to address the unique nutritional challenges faced by people with ALS. Through evidence-based practices and collaborative research, we aim to enhance quality of life, nutritional status, and overall well-being for individuals affected by ALS and their caregivers.

Palliative Committee

Chair: Ambereen Mehta (email hidden; JavaScript is required) and Laura Foster (email hidden; JavaScript is required) 
The Palliative Care Committee's mission is to promote and support the development and dissemination of high-quality research that enhances quality of life for people living with ALS and care partners. We strive to foster multidisciplinary collaborations and increase representation of palliative care research throughout the NEALS organization.​

Goals:

1. To understand biopsychosocial needs of ALS patients and family caregivers during different stages of ALS
2. Explore patients, caregivers, and healthcare providers’ perceptions of palliative care for individuals living with ALS
3. To develop palliative care models of care for ALS patients and their caregivers
4. To develop practice model to integrate palliative care within the multidisciplinary ALS clinic
5. To develop care models of providing hospice and comfort care for ALS patients
6. To develop spectrum of continued care model for caregivers throughout the illness and after the patients’ demise

PEACe Committee

Chairs: Rick Bedlack (email hidden; JavaScript is required), Allison Bulat (email hidden; JavaScript is required ) and Nadia Sethi (email hidden; JavaScript is required)

The Patient Education and Advocacy Committee is dedicated to utilizing education and collaboration to empower people impacted by ALS to gain an understanding of, and provide valuable input to, research and the overall ALS drug development process. This committee supports the NEALS Clinical Research Learning Institute (CRLI) Research Ambassador Training Program, and provides opportunities for integration of lived perspective / partnerships between the patient community, academia and industry.

Physical Therapist/Occupational Therapist Committee

Chairs: Michele Weaver (email hidden; JavaScript is required) and Claire MacAdam email hidden; JavaScript is required)
Physical therapists and occupational therapists who have been active in NEALS clinical trials determined an interest in forming a research Physical Therapist/Occupational Therapist committee within NEALS. This highly motivated group developed a mission statement and goals for the committee and elected co-chairs. This committee will be an asset to NEALS not only in the conduction and regulation of clinical trial measures, but also to increase the knowledge base of issues related to movement and function in ALS through independent research.

Mission Statement: The mission of the physical therapists (PT) and occupational therapists (OT) committee is to promote and encourage involvement of physical therapists and occupational therapists in developing standards of care, evaluation and assessment measures, and research both Physical Therapy/Occupational Therapy specific and for clinical trials.

Recruitment, Retention, and Experience in ALS Research (RRE Committee)

Chairs: Lindsay Pothier (email hidden; JavaScript is required) and Meghan Hall (email hidden; JavaScript is required)
Scientific breakthroughs and the growing pipeline of candidate therapeutics for ALS offer renewed hope that research will soon bring about new options for people with ALS. Yet, for this to occur, it is critical that research projects and clinical trials be completed in an effective and timely manner. The mission of this committee is to develop strategies to maximize the Recruitment, Retention, and Experience (RRE) of participants in ALS research.

With this goal in mind, the RRE Committee at NEALS will:

• identify challenges, barriers and opportunities for PALS participation in research at NEALS;
• work with the Principal Investigators and study teams of selected NEALS studies to boost RRE of ongoing studies;
• create a shared toolbox of resources and templates that can be used to maximize RRE of future NEALS projects;
• collaborate closely with other relevant NEALS Committees and advocacy groups to promote a culture of partnership among all stakeholders in ALS research.

Research Coordinator Committee

Chair: Heidi Runk (email hidden; JavaScript is required) and Brandy Quarles (email hidden; JavaScript is required)
The mission of the Research Coordinator Committee is to promote professional development, foster collaborative coordinator training, develop leadership skills, and create a collective repository of forms and templates to maximize day-to-day clinical trial efficiency within the ALS research community.

Goals:

1. To understand the professional and resource needs of NEALS research coordinators
2. To promote professional development opportunities within the NEALS research coordinator community
3. To create a research coordinator-specific mentor program for new NEALS sites and/or research coordinators
4. To develop shared resource materials for pharmaceutical, federal, and NEALS clinical trials
5. To serve as a resource for pharmaceutical, federal, and NEALS investigators providing site level experience-based advice during the protocol development and implementation phase

Research Nurse Committee

Chair: 
The Nursing Research Committee was established to further nursing science as it relates to ALS, to foster professional development and leadership, and to influence the future of ALS research with evidence-based research. The Committee encourages all nurses in NEALS to participate.

Respiratory Care and Ventilation Committee

Chairs: Christopher D. Lee (email hidden; JavaScript is required), Eufrosina Young (email hidden; JavaScript is required) and Benjamin Rix Brooks (email hidden; JavaScript is required)  

The NEALS Ventilation Committee will advance respiratory care interventions to improve the quality and quantity of life, as well as safety, for patients with Amyotrophic Lateral Sclerosis (ALS).

Technology in ALS

Chairs: Andrew Geronimo, (email hidden; JavaScript is required), Sabrina Paganoni (email hidden; JavaScript is required) Stephen Johnson, (email hidden; JavaScript is required)

Technological advances have brought about emerging opportunities to enhance ALS care and research. Innovative technology solutions are poised to improve clinical outcomes and patient satisfaction while reducing costs, and provide valuable patient-centered research tools.

Opportunities to leverage technology in ALS care and research cluster around three usage domains:

• Telemedicine (defined as clinical interactions with the clinical care team);
• Mobile Health and digital monitoring (to support research and ALS drug development);
• Assistive devices (defined broadly as technological solutions to increase patients’ interaction with the environment and quality of life).

The mission of the Committee is to build a network of NEALS investigators who are engaged in advancing the use and development of Technology across all three domains of ALS care and research described above:

• The Committee will work to increase awareness about ongoing projects and technology adoption among NEALS members.
• The Committee will review the landscape of technology in ALS care and research and identify opportunities for innovation.
• The Committee will foster collaborative multicenter technology-based projects.

Given the nature and breadth of the issues that the Committee strives to address, Committee members will collaborate closely with other relevant NEALS Committees and Task Forces as well as patient organizations and advocacy groups in order to maximize the impact of technology in ALS.

Upper Motor Neuron Committee

Chairs: Sabrina Paganoni (email hidden; JavaScript is required), Jinsy Andrews (email hidden; JavaScript is required) and Hande Ozdinler (email hidden; JavaScript is required)
The NEALS Upper Motor Neuron Disease (UMND) Taskforce committee is dedicated to improving care and quality of life while furthering scientific understanding and developing treatments for people with upper motor neuron (UMN) disorders, including Primary Lateral Sclerosis (PLS) and Hereditary Spastic Paraparesis (HSP).

Veterans Affairs (VA) Committee

Chairs: Colin Quinn (email hidden; JavaScript is required) and Christina Fournier (email hidden; JavaScript is required)
The Veterans Affairs hospitals and clinics are distinct care environments, which function outside of the private insurance system. These environments provide their own unique opportunities and challenges. This proposed committee intends to increase communication and cooperation amount the many physicians and ancillary staff providing care to patients with ALS in the VA. Most VA hospitals are formally associated with their local academic medical center, and thus many of our NEALS members hold joint appointments and provide care for veterans with ALS.

Our initial goals are as follows:

1. To establish our membership numbers and clinic characteristics 

2. To consider the use of common data forms in our clinics 

3. To discuss and support cooperative veteran-centered research projects 

4. To utilize the national infrastructure of the VA system to expand NEALS initiatives into the veteran population.