Neurodegenerative Diseases Networking Group
About the NDNG
On 26 October 2017, the ACRM Neurodegenerative Diseases Networking Group (NDNG) held its largest business meeting ever at the ACRM Annual Conference at the Atlanta Hilton in Atlanta, Georgia, USA.
Rehabilitation in neurodegenerative conditions is getting increasing attention as an effective treatment to maintain independence and decrease disability. The NDNG has the goal of promoting and facilitating neurodegenerative rehabilitation research and scholarship. As one of the leading neurodegenerative diseases groups in the USA, our mission is to rapidly disseminate knowledge on evidence-based practice for improved health, wellness, and quality of life; and promote innovative biomedical research to identify ways in which these goals can be better translated into clinical practice through physical medicine and rehabilitation.
The NDNG promotes research on Alzheimer’s disease and related dementias, multiple sclerosis, Huntington’s disease, amyotrophic lateral sclerosis, Parkinsonism and many other important neurodegenerative conditions. The NDNG values, commits to, and advocates for inclusion, diversity and equality in research development and practice.
"Our mission is to rapidly disseminate knowledge on evidence-based practice for improved health, wellness, and quality of life; and promote innovative biomedical research to identify ways in which these goals can be better translated into clinical practice through physical medicine and rehabilitation."
The people behind NDNG promote research on Alzheimer’s disease and related dementias, multiple sclerosis, Huntington’s disease, amyotrophic lateral sclerosis, Parkinsonism and many other important neurodegenerative conditions.
The NDNG prides itself on having volunteers who serve as liaisons, and on task forces and committees across ACRM. The assistance of our members enables the NDNG to help further the mission of this specialized group to inform others around the world of advances in rehabilitation research and clinical care for all individuals living with neurodegenerative conditions.
- Serve on the executive committee and/or task forces
- Participate in research collaborations
- Develop or participate in continuing education opportunities
- Help plan educational programs and presentations for the ACRM conference
- Develop industry partnerships
Call for Neurodegenerative Diseases Proposals
The Program Committee invites proposals focused on research evidence and its translation into clinical practice for presentation at the ACRM 2018 Annual Conference in Dallas.
How does ACRM Help Neurodegenerative Diseases?
- Over 415 NDNG members including 216 ACRM members
- Unique Innovative Neurodegenerative publications ( i.e., IE Pages)
- Non-stop content at the annual conference
- A diverse and strong Neurodegenerative Task Forces representation
- Specialized state-of-the-art Instructional Courses and Symposia at ACRM 2017 Conference
Call for Nominations for Co-Chairs-Elect
Are you interested in a leadership role with the Neurodegenerative Diseases Networking Group (NDNG)? The NDNG Executive Committee is looking for interested members to become the 2018-2020 Co-Chairs-Elect of the Neurodegenerative Disease Networking Group. This is a great opportunity to take on a leadership role. Guidance and support will be provided by the current and past chairs.
To share the responsibilities of leading our growing group, we would like to have two (2) Co-Chairs-Elect this year to transition into the following succession plan:
OCT 2018 - OCT 2020 (One chair)
Co-Chair-Elect 1: TBD
Co-Chair-Elect 2: TBD
Past Chairs: Heyn, Backus
OCT 2020 - OCT 2022 (Change to two co-chairs)
Co-Chair 1: TBD
Co-Chair 2: TBD
Co-Chair-Elect 1: TBD
Co-Chair-Elect 2: TBD
Past Chairs: Hirsch, Heyn, Backus
- Participate and help the chair with the monthly business meetings
- Meet with the chair to evaluate and contribute to the NDNG mission, goals, and bylaws
- Support and help the NDNG chair with the NDNG organization and activities (program comm, awards com, etc).
- Help with the collaborations and communications between ACRM networking groups, members-at-large and staff.
- Assist the NDNG chair in identifying and overseeing professional activities for members, such as organizing a collaboration on a journal article or special issue and coordinating activities at the ACRM Annual Meeting.
- Assist the chair in the planning of the business meeting at the ACRM Annual Meeting.
- Organize an NDNG symposium for the ACRM Annual Meeting.
Enjoy the experience!
If you are interested in learning more about the NDNG Co-Chair-Elect role, nominating a respected colleague, or self-nominating, please contact NDNG Chair, Patricia Heyn by 1 June 2018.
Women in Neurodegenerative Disease Rehabilitation Science Award
The award is given to acknowledge world-class rehabilitation research conducted by a female scientist in the rehabilitation research field of multiple sclerosis, amyotrophic lateral sclerosis, Parkinson’s, dementia, Alzheimer’s or related neurodegenerative disease.
Activities from the 2017 Annual Conference
The NDNG contributed to an exciting program for the annual conference. Unique expertise related to Parkinson's, MS, AD, ALS, HD, cognition, physical activity, arts and sciences were offered to attendees.
The NDNG Business Meeting was held on 26 October.
Neurodegenerative Diseases Lecture Luncheon
The annual Neurodegenerative Diseases Lecture Luncheon was held on 27 October and featured Dr. Erwin van Wegen and his talk titled, Patients as Partners in Research and Community Health Care. Dr. van Wegen is associate professor in neurorehabilitation at the Department’s of Physical Therapy and Rehabilitation Medicine at the VU University Medical Center, Amsterdam.
Dr. van Wegen’s research has been externally funded since 1999 by NINDS, NASA, NIAAA, the Dutch Parkinson disease Patient Society, ZonMw, Internationaal Parkinson Fonds, the European Research Council, and others. His lab uses neurophysiologic techniques (mobile EEG, tDCS), body worn technology against freezing of gait, continuous activity monitoring, and iOS and Android app development for physical activity promotion in Parkinson’s disease.
Dr. van Wegen gained an international reputation through work on the Parkinson study ‘RESCUE’ (Research on Cueing). He is well published in the field of neurorehabilitation research with publication of over 100 international papers and serves on several international editorial boards. He is a fabulous teacher of allied health care professionals within the Netherlands-based ParkinsonNet, and highly respected in the clinical and rehabilitation research community.
Chat with the Experts: Neurodegenerative/Neuroplasticity/ Community-Based Rehabilitation
On 26 October, members of the NDNG participated in a Chat with the Experts panel that engaged attendees on neurodegenerative and neuroplasticity topics, From Neurons to Neighborhoods. The panel included:
- Mark A. Hirsch, PhD, Carolinas Rehabilitation, Department of PM&R, Carolinas Medical Center
- Erwin E. H. van Wegen, PhD, Associate Professor, Amsterdam University
- Patricia Heyn, PhD, FGSA, FACRM, Associate Professor, University of Colorado Anschutz Medical Campus
- Marie Cavallo, PhD, CHC, CHPC, Associate Chief Compliance Officer, AHRC New York City
Neurodegenerative Disease Poster Awards
The NDNG annually recognizes outstanding scientific posters at the ACRM Annual Conference.
- Neurodegenerative Diseases Best Poster Award: Association Between Gait Speed and Cognitive Function in Adults with Cerebral Palsy
Patricia Heyn, Alex Tagawa, Zhaoxing Pan, Amy Bodkin, James Carollo
- Early Career Poster Award for Neurodegenerative Diseases: Relationship between Executive Function Components and Activities of Daily Living in Elderly with Mild Dementia
Moon-Young Kim, Ji-Hyuk Park, Jong Bae Kim, Hae Yean Park
- Neurodegenerative Diseases Networking Group Women & Minorities in Science Poster Award: Relationship Between Muscle Strength and Functional Exercise Capacity in Patients With Multiple Sclerosis
Arzu Guclu-Gunduz, Cagla Ozkul, Taskın Ozkan, Yasemin Aydın, Ceyla Irkec.
One of the most valuable benefits of ACRM membership is the opportunity to participate in the many interdisciplinary special interest groups (ISIG) and networking groups. Please contact the NDNG Membership Officer, Hannes Devos, PhD, DRS or the NDNG Chair, Patricia Heyn, PhD, FGSA, FACRM to learn more about this networking group and ways to participate.
Click the JOIN NOW button to learn more or contact Member Services at +1.703.435.5335 for personal assistance.
NDNG Welcomes Industry and Stakeholder Involvement and Partnerships
The NDNG understands the importance of working in synchronicity with all the key stakeholders involved in the care and cure of neurodegenerative diseases. For this reason, we invite corporate partners, including startup companies, to associate with our networking group as an important contributor.
In addition, we have several opportunities for the industry to contribute and sponsor important activities related to the science of neurodegenerative diseases. If you are involved with the ND industry and you would like to participate in the NDNG as a member, please contact Terri Compos. If you are interested in sponsoring NDNG activities, please contact Jenny Richard.
About the NDNG Leadership
The leadership of the Neurodegenerative Diseases Networking Group consists of a rich and diverse specialized group of professionals each contributing with their unique expertise to the activities of the NDNG.
The EXECUTIVE COMMITTEE
CHAIR (2016 - 2018)
Patricia Heyn, PhD, FGSA, FACRM
Associate Professor, Physical Medicine & Rehabilitation
Senior Scientist, Center for Gait & Movement Analysis (CGMA), Anschutz Medical Campus
University of Colorado
Mark A. Hirsch, PhD
Senior Scientist, Physical Medicine & Rehabilitation Director, Carolinas PM&R Core Lab Director, Resident Rsearch Education (PM&R)
Carolinas HealthCare System
Hannes Devos, PhD, DRS
Director, Laboratory of Advanced Rehabilitation Research in Simulation
Kansas University Medical Center (KUMC)
Department of Physical Therapy & Rehabilitation Science
Kansas City, KS
SOCIAL MEDIA OFFICER
Julie Faieta, MOT, OTR/L
School of Health and Rehabilitation Sciences
Graduate Research Associate, Division of Occupational Therapy
Ohio State University College of Medicine
ACRM COMMUNITY GROUP LIAISONS
International Liaison Officer:
Early Career Networking Group Liaisons:
ACRM Program Committee Liaisons:
ACRM Awards Committee Liaison:
NDNG Task Forces
ALZHEIMER'S DISEASE TASK FORCE
CHAIR: Julie Faieta, MOT, OTR/L
PhD Student, School of Health and Rehabilitation Sciences
Graduate Research Associate, Division of Occupational Therapy
Ohio State University College of Medicine
The Alzheimer’s Disease Task Force aims to develop and disseminate up-to-date and clinically relevant research on the treatment of both at risk and diagnosed Alzheimer's disease (AD) populations. Building on the current body of evidence, the group works to produce meaningful literature for those living with AD, their caregivers, and the healthcare team.
The primary goal of these endeavors is to enhance the quality of life for those affected by AD through production and dissemination of high quality and clinically-applicable research. Roles within the group will include co-authoring peer-reviewed journal articles, developing patient/caregiver targeted information and education pages, and producing scholarship on the work being produced by the task force.
In addition, members will have the opportunity to participate in monthly meetings to discuss the status of current work and to deliberate on future aims. Outlined below are a number of anticipated projects to support the previously described goals:
- Systematic review of the current literature on non-pharmacological interventions for the treatment of AD
- Literature describing the role of rehabilitation professionals/clinicians in the treatment of AD populations
- Information/education pages describing topics such as AD stages/symptoms, and environmental supports and community resources relevant to AD populations
- Investigation into assistive technology, such as virtual reality, cognitive support, and environmental support technology, that has the potential to positively impact the quality of life and well-being of individuals affected by AD
- Survey members for additional project ideas during annual /monthly meetings
To learn about upcoming opportunities to participate, contact the chair, Julie Faieta.
AWARDS TASK FORCE
In 2016, the Awards Task Force developed three NDNG Poster Awards, including:
- NDNG Early Career Poster Award
- NDNG Best Poster Award
- NDNG Women & Minorities in Science Poster Award
The NDNG Poster Award recipients are selected each year by the Awards Task Force to promote and acknowledge excellence in rehabilitation research and scholarship. See past recipients >>
In 2017, the Women in Neurodegenerative Disease Rehabilitation Science Award was established. The award is given to acknowledge world-class rehabilitation research conducted by a female scientist in the rehabilitation research field of multiple sclerosis, amyotrophic lateral sclerosis, Parkinson’s, dementia, Alzheimer’s or related neurodegenerative disease. Learn More >>
EDUCATION TASK FORCE
CO-CHAIR: Michele York, PhD, ABPP-CN
Baylor College of Medicine
The Education Task Force has the goal to provide opportunities to members to develop and publish neurodegenerative related materials designed to provide consumer-friendly information on topics relevant to rehabilitation medicine, including basic background or overview as well as provide opportunities for members to work collaboratively in scientific peer-review publications. These can be targeted toward people with disabilities, caregivers, clinicians; policy makers and researchers.
If you have an idea for a publication or want to join the NDNG Education Task Force, please contact Michele York.
EVIDENCE-BASED PRACTICE & OUTCOMES RESEARCH TASK FORCE
2018 Goals include:
- Identifying and promoting the best available Dementia Prevention research
- Encouraging increased communication and collaboration among investigators contributing to this work.
PSYCHOSOCIAL TASK FORCE CHAIR
CHAIR: Cherie Hyder, Pharm D, JD
Sr. Medical Science Liaison
Avanir Pharmaceuticals Inc.
HEALTH & WELLNESS TASK FORCE
CHAIR: POSITION OPEN
PEDIATRIC TASK FORCE CHAIR
CHAIR: POSITION OPEN
Members in the Spotlight
Dr. Shilpa Krishnan Receives NIDILRR Switzer Research Fellowship
Congratulations to NDNG Secretary, Dr. Shilpa Krishnan, who was awarded the 2017 NIDILRR Switzer Research Fellowship to investigate a Patient-Centered Pressure Ulcer Outcome Preferences: A Mixed-Methods Study.
Ray of Hope Award honored Dr. Mark A. Hirsch and Dr. Sanjay S. Iyer
This award is given annually by the Parkinson Association of the Carolinas to a person who has supported its mission “to serve as a resource for individuals and their families affected by Parkinson’s disease in the Carolinas through education, community outreach, and direct support.”
The honorees Sanjay S. Iyer, MD, Danielle Englert, MD, and Mark A. Hirsch, PhD, were presented the award during the 2016 Bill & Betty Ray Awardees Luncheon and Awards Ceremony in recognition of their dedication to research and treatment of Parkinson’s Disease and support of the Parkinson’s Association of the Carolinas.
ND Related Information/Education Pages (IEPs) >>
These fact sheets are published in the ACRM journal, Archives of Physical Medicine & Rehabilitation, as tear-out pages. They are designed to provide consumer-friendly information on topics relevant to rehabilitation medicine, including basic background or overview, or brief how-to suggestions. They are targeted toward people with disabilities, their caregivers, or clinicians and are designed to be torn out of the journal and and copied (or downloaded) for distribution.
- Coping With Caregiver Burnout When Caring for a Person With Neurodegenerative Disease: A Guide for Caregivers
- Physical Activity Recommendations for the Aging Brain: A Clinician-Patient Guide
- Decisions About Driving for Persons With Neurodegenerative Conditions
- What Is Mild Stroke?
- Brain Gaming: A User's Product Guide for the Clinician
- Pseudobulbar Affect
- Memory and Traumatic Brain Injury
- Cognitive Problems After Traumatic Brain Injury
- Emergency Preparedness for People With Disabilities
- Guide to Living With Aphasia
ND Related Organizations and Societies
- Alzheimer's Association
Information on Alzheimer's disease and dementia symptoms, diagnosis, stages, treatment, care, support resources, research and grants.
- Alzheimer's Foundation
Information about care, caregiving resources, training and education for both consumers and professionals.
- Dementia Society of America
Dementia education for all-dementia conditions, for the families and caregivers. Present a variety of resources and programs and have several educational resources about dementia.
- Brain Health
Learn about brain health and how you can make the most of your brain as you age. This website is sponsored by the HHS ACL.
- NIA Health & Aging
Offers a rich variety of research-based information and resources related to health and aging.
- International Parkinson and Movement Disorders Society
- Upcoming Courses & Conferences for ND
- International Association of Parkinsonism and Related Disorders
- American Academy of Neurology
- International Parkinson Network
- Northeast Amyotrophic Lateral Sclerosis Consortium
In ParkinsonNet, over 3,000 medical and allied health professionals are collaborating. They are supported by an enthusiastic team at the ParkinsonNet coordination centre at the Radboud University Nijmegen Medical Centre lead by the ParkinsonNet initiators, Prof. dr Bastiaan Bloem and Dr. Marten Munneke.ParkinsonNet is endorsed by professional healthcare organizations (e.g. for physiotherapy, speech and language therapy and neurology) and the Dutch Parkinson patient's society.
- National Multiple Sclerosis Society (NMSS)
- MS Foundation
- MS Association of America
- HealthCare Journey