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NEWSLETTER The 20th International Symposium for ALS/MND The ERICA eye gaze system versus manual letter board to aid communication in ALS/MND 19th International Symposium for ALS/MND International Alliance of ALS/MND Associations Needs and Offers program The 18th International Symposium for ALS/MND  Berlin, Germany was the setting for the 20th International Symposium for ALS/MND organized by the Motor Neuron Disease Association in cooperation with the International Alliance of ALS/MND Associations held in December 2009. Terry Heiman-Patterson MD, Jeffrey Deitch PhD and Sara Feldman PT attended the symposium. The symposium itself is divided into three parts: the first is the International Alliance of ALS/MND Associations meeting with the Ask the Experts segment; the second is the Allied Professionals’ Forum; and the final three days are the scientific and clinical presentations for the International Symposium. 
The Allied Professionals’ Forum and the Ask the Experts sessions were sponsored by The ALS Hope Foundation. The International Alliance of ALS/MND Associations meeting convenes leaders of organizations from around the world to discuss issues impacting individuals with ALS wherever they live. Dr. Jeffery Deitch presented at this meeting on “How to answer the question “Is there any progress in finding a cure.”” The Allied Health Professionals’ Forum brings together allied health professionals from around the globe. It is an important meeting for these health professionals such as nurses and therapists to learn from each other and network with others providing care. Sara Feldman gave a presentation on “The P300 Speller; Using a Brain Computer Interface for Communication” during which she described the research being done at the MDA/ALS Center of Hope using the Brain Computer Interface. During the symposium, Dr. Heiman-Patterson, along with Dr. Jeffrey Rosenfeld from UCSF, California, chaired the clinical session “Translating Evidence into Practice.”  The poster session was another means of exchanging information and educating others to the work being done at the MDA/ALS Center of Hope. The following posters were supported by members of our team: Dr. Terry Heiman-Patterson presented two posters 1) “Quantitative Trait Loci (QTL) Linked to Phenotype in the G93A SOD1 TG Mouse” with support from co-authors Dr. Elizabeth Blankenhorn, Dr. Guillermo Alexander, Matt Myerson and Dr. Jeffrey Deitch in the laboratory and 2) “Effects of NIPPV Initiation on Pulmonary Function Testing in ALS Subjects” along with Dr. Michael Sherman, Sara Feldman, and Melonie Mitchell from the Center. They were also co-authors on “ Factors Associated with Non-Invasive Positive Pressure Ventilation Compliance in ALS/MND Patients” presented by Dr. Carlayne Jackson from University of Texas Health Science Center, San Antonio, Texas. Sara Feldman presented a poster on the work done by her biomedical engineering student Jennifer King on “An Examination of the Effect of Ground and Reference Electrode Placement on the Accuracy of the P300” with Dr. Heiman-Patterson as a co-author. 
Back to Top "The ERICA eye gaze system versus manual letter board to aid communication in ALS/MND" Donna Harris , Mark Goren British Journal of Neuroscience Nursing Volume 5, Issue 5; 08 May 2009, pp227-230 The 19th International Symposium for ALS/MND organized by the Motor Neuron Disease Association in cooperation with the International Alliance of ALS/MND Associations was held in Birmingham, England in November 2008. Terry Heiman-Patterson MD, Jeffrey Deitch PhD, Sara Feldman PT, Mark Goren OT, Donna Harris SLP, and Jennifer King, biomedical engineering student, attended the symposium. The symposium itself is divided into sections, the first is the International Alliance of ALS/MND Associations meeting with the Ask the Experts segment; the second is the Allied Professionals’ Forum; and the final three days are the scientific and clinical presentations for the International Symposium. The Allied Professionals’ Forum and the Ask the Experts sessions were sponsored by The ALS Hope Foundation.  Dr. Jeffery Deitch and Sara Feldman presented at the International Alliance of ALS/MND Associations. Sara Feldman’s presentation was “ABrELA-ALS Hope Foundation Partnership” where she discussed the ongoing partnership between ABrELA in Brazil and the ALS Hope Foundation. In July of this year, Adriana Klein, the occupational therapist from ABrELA came to Philadelphia. This is an important exchange of information, knowledge and expertise. The ongoing commitment on both sides to continue the partnership was discussed with plans to continue to develop an interactive educational CD. Dr. Deitch’s presentation “Needs, Offers and Exchanges: The Iceland ALS Hope Partnership” reviewed the trip to Iceland in August of 2008 as part of the Needs and Offers program of the International Alliance of ALS/MND Associations. At the invitation of Guðjón Sigurðsson, president of the MND Association of Iceland, Sara and Jeff toured the clinic and hospital facilities where people with ALS/MND receive their care and met with other clinicians and officials to discuss the database, research and on-going care of individuals with ALS. We know that these two partnerships are an important part of our participation in the worldwide clinical and research effort to improve the lives of people living with ALS and move us closer towards the goal of curing ALS. 
 Dr. Jeff Deitch (L) and Sara Feldman (R) The Allied Health Professionals’ Forum brings together allied health professionals from all over the world. It is an important meeting for professionals such as nurses and therapists who do not have the same level of contact with others treating individuals with ALS as the researchers and physicians do. Sara Feldman gave a presentation on “Computer Accessibility Options for Individuals with ALS” which educated the attendees on the variety of options available to individuals with ALS to access their computers as they begin to have difficulties using a standard keyboard and mouse. Mark Goren and Donna Harris presented on “Comparing the Erica Eye Gaze System to the Manual Letter Board for Communication Purposes in the ALS Population.” This study was a follow-up to their previous study which looked at the Cyberlink system and is part of an on-going examination and comparison of the different ways individuals communicate. 
  The poster session offers another means of showcasing the work being done at the MDA/ALS Center of Hope. The following posters were supported by members of our team: Dr. Terry Heiman-Patterson presented the poster “Non-Invasive Measurement of Mouth to Colon Transit Time in Patients with Amyotrophic Lateral Sclerosis (ALS)” with co-authors from the team; Dr. Anahita Deboo, Research nurse Christine Barr, and students Glenn Russo, Justin Chen and Rayya Saadiq. She was a co-author on the following posters: “The ALS Nutrition/NIPPV Study” and “Factors Associated with Non-Invasive Positive Pressure Ventilation (NIPPV) Compliance in Patients with ALS/MND.” Dr. Jeffery Deitch and Dr. Heiman-Patterson presented the poster “Gender Differences in Survival of G93A SOD1 Mice is not Due to Differences in Mutant SOD1 Expression” with P Sandhu, Guillermo Alexander and Matt Myerson from the lab as co-authors. Jennifer King presented the poster “An EEG Impedance Correlation Study for Brain-Computer Interface” and Dr. Heiman-Patterson, Dr. Anahita Deboo and Sara Feldman were co-authors. 
 Attending the International Symposium on ALS/MND was an extraordinary experience for each of the team members who participated. The formal lectures, the informal lunches, the exchanging of information, the sharing of expertise- all of this with individuals from around the world with the same sense of urgency and the same level of dedication. It was hard not to leave without a new level of optimism and hope for the future in this fight against ALS. International Alliance of ALS/MND Association: http://www.alsmndalliance.org Back to Top Jeffrey Deitch, PhD Assistant Professor of Neurology at Drexel University College of Medicine and Managing Director of the ALS Hope Foundation, and Sara Feldman, the physical therapist and assistive technology professional at the MDA/ALS Center of Hope traveled to Iceland in August of 2008 as part of the Needs and Offers program of the International Alliance of ALS/MND Associations. At the invitation of Guðjón Sigurðsson, president of the MND Association of Iceland, Sara and Jeff toured the clinic and hospital facilities where people with ALS/MND receive their care and met with the staff of the facilities. Sara gave presentations on Assistive Technology and Multidisciplinary Care at the Landspítali Hospital in Reykjavík and the Heilsustofnun NLFI clinic in Hveragerdi. At the clinic we got the chance to see the room they created based on the Dr. Bruce Rosenberg Suite of Hope established by the ALS Hope Foundation at Hahnemann Hospital. These rooms are adapted to accommodate the special communications and mobility needs of people with ALS when they need to stay overnight in a hospital or clinic. Jeff met with Dr. Grétar Guđmundsson, the neurologist in Iceland specializing in ALS, other clinicians, and officials of the Icelandic government, to discuss sharing a database program developed by the ALS Hope Foundation. This database can be used to follow patient progress, provide data for epidemiological studies, and relate biological samples to disease progression for research (i.e., biomarkers). We also met with a representative from deCODE genetics, Inc., to discuss research and development using genetic samples and population mapping to identify genes potentially involved in the risk and/or progression of ALS/MND. We also were given a tour of their well-equipped advanced research facilities. Understanding how care is delivered in different settings helps in evaluating and redefining how we give care here in the US. We hope these two partnerships are just the beginning of our participation in the worldwide clinical and research effort to improve the lives of people living with ALS and move us closer towards the goal of curing ALS.  Pictured: Sara Feldman, Gudjon Sigurdsson, president of the MND Association of Iceland, and Jeff Deitch Back to Top  The 18th International Symposium for ALS/MND organized by the Motor Neuron Disease Association in cooperation with the International Alliance of ALS/MND Associations was held in Toronto, Canada in December 2007. Terry Heiman-Patterson MD, Jeffrey Deitch PhD, Sara Feldman PT, Mark Goren OT, and Donna Harris SLP attended the symposium which included the International Alliance of ALS/MND Associations meeting and the Allied Professionals’ Forum. The Allied Professionals’ Forum and the Ask the Experts sessions were sponsored by The ALS Hope Foundation. Dr. Terry Heiman-Patterson presented two posters, “Adherence to NIPPV in ALS Patients with Mild and Moderate Respiratory Impairment: Preliminary Results of the Pilot Nutrition/NIPPV Study” and “Measuring Rate of Decline in Pulmonary Function in ALS: Preliminary Results from the ALS Nutrition/NIPPV Study Group.” Roseanne Sattazhan RN is the Medical Monitor and Clinical Research Coordinator for the NIPPV study. Sara Feldman presented at the International Alliance of ALS/MND Associations meeting with Dr. Francisco Rotta on the partnership between ABrELA in Brazil and the ALS Hope Foundation. She and Dr. Rotta discussed the importance of exchanging information between our organizations and the ongoing commitment on both sides to continue the partnership. She also presented on “Assistive Technology in the Acute Care Setting” at the Allied Professionals’ Forum. This highlighted the two rooms in Hahnemann Hospital specially equipped for people with ALS and their families. Mark Goren and Donna Harris presented on the “Cyberlink Control System” at the Allied Professionals’ Forum. This presentation reported the findings of a study they conducted at the clinic comparing the Cyberlink system with the letterboard for communication. 
 The participants came back from the International Symposium with both a sense of accomplishment and an affirmation of our purpose. It was a worthwhile trip, made better by sharing it with others with similar energy, passion and focus in the fight against ALS. Back to Top |