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On February 25, 2013, the United States Food and Drug Administration opened its doors to hear the voices and see the faces of the entire ALS community. At an open hearing in Silver Spring, MD, this was the first time in ALS history that officials from the FDA have welcomed comments, suggestions, and concerns regarding the gaps in care for ALS patients in America. The purpose of the day was to inform those responsible for regulating new ALS drug therapies of the devastation and time essence patients face. All those involved with the illness were invited to take part and share their experiences with the disease first-hand. Patients, healthcare providers, caregivers, physicians, scientists, organization leaders, and industry representatives came together to speak for eight hours about the severity of ALS, while the panel of FDA directors sat quietly and listened intently to our stories.
Among the organizations at the hearing, three of the MDA/ALS Center of Hope team members represetned the ALS Hope Foundation as they shared with the FDA panel. Sara Feldman, PT spoke of her challenges in treating patients with the limited amount of mediciation options to manage symptoms, as well as the need for expanded inclusion criteria in clinical trails and an ALS "fast track" for trial data reviews. She implored the FDA to listen especially to those presently living with ALS and let them guide the FDA's decision-making process.
Mary Paolone, MSRN asked panel members to consider some difficult questions about why there is only one, not so promising, drug treatment available for the disease, when there have been over 140 in existence. Why is the cost of this therapeutic deterringly exorbitant? She clearly proposed that we join the FDA to "modify its policies and procedures to reflect an understanding that ALS is taking human lives at a rate that is simply unacceptable for this day and age." Mary ended her speech by asking the panel to consider if they or their loved ones were diagnosed with ALS, stressing that, "We can do better!"
Finally, Latoya Weaver, PSC and former caregiver of her mother who lived with ALS discussed the increasing needs for assistance and her hope in one day finding a cure. She stated, "For I will continue to speak and spread the word about ALS to be the change we need, and now my voice is louder than ever!"
After all participants expressed their compelling perspectives, with the patients being the real heroes of the day, the central theme was, "There is no time for patients with ALS;" they cannot wait for red tape delays! The FDA must realize the rapidity and severity of this illness and act accordingly. In addition, this population is much more willing to take on risks that other patients would not consider trying. Will the FDA reconsider their Compassionate Use Program policies as well?
The dialogue is not over, and we urge you to submit your thoughts and comments in writing, which the FDA will accept until March 25, 2013. You can submit them online at by clicking here (click on the "Comment Now!" button).
The annual conference, held in Chicago, Illinois this year, began with the 20th Annual Meeting of the Alliance of ALS/MND Associations, which took place on December 2 and 3, 2012. Organizations from around the world were represented by individuals who gathered to "share resources globally, to advance awareness, and to promote support of people living with ALS/MND worldwide," as expressed in the Alliance's mission statement. The attendees heard presentations recounting expereinces with ALS/MND research; new projects, members, and programs; partnerships and collaborations; and advocacy. During the meeting, the ALS Hope Foundation's managing director, Dr. Jeffrey Deitch, began his four-year term as chairperson of the Alliance.
These meetings end with the Ask the Experts session where local residents, including people living with ALS, have the chance to listen to presentations by experts in the field and ask questions.
On December 4, 2012, the Allied Professionals Forum (APF) attracted more than 340 medical professionals from around the globe, encouraging health professionals, like nurses and therapists, to exchange information and ideas, as well as develop a network of like-minded individuals. The MDA/ALS Center of Hope's physical therapist, Dr. Sara Feldman, is part of the program committee for this event, and the ALS Hope Foundation is one of the original sponsors of this exciting program. The diverse and informative presentations covered a range of topics including support for caregivers and staff, assistive technology and electronic options for communication and computer use, palliative care issues, educational programs, clinical management ideas from different members of the multidisciplinary team, and special considerations for parents with ALS/MND. In Dr. Feldman's presentation, entitled "Computer Access Options for Individuals with ALS," she covered the entire spectrum of accessibility options from those available on the computer's operating system to the eye gaze system, emphasizing the otpions commonly used by individuals with ALS. To read more about this year's APF meeting, please click here.
Over the next three days, researchers, clinicians, association representatives, and people living with ALS and their caregivers gathered for the 23rd International Symposium on ALS/MND. This Symposium brings together leading international researchers and healthcare professionals to present and discuss key innovations in their respective fields. It includes a poster session as an additional way of exchanging information and sharing knowledge. We're excited and proud to report that the clinic team was well represented in the poster session. Click here to find a list of presenters and poster titles. The Symposium is organized by the Motor Neuron Disease Association in cooperation with the International Alliance of ALS/MND Associations. Click here to read a summary from Dr. Terry Heiman-Patterson about the clinical trials presented during the clinical track of the symposium.
ALS Hope Foundation board member and founder of the organization Hope Loves Company (HLC), Jodi O'Donnell-Ames, presented her HLC mission at the International Symposium. Click here to read more about Jodi's inspiring experience.
The 22nd International Symposium on ALS/MND was held December 2011 in Sydney, Australia. The Symposium is organized by the Motor Neuron Disease Association in cooperation with the International Alliance of ALS/MND Associations. Terry Heiman-Patterson, MD, Jeffrey Deitch, PhD, Sara Feldman, PT, and Lauren Scull attended the program. The Allied Professionals' Forum and the Ask the Experts sessions were sponsored by the ALS Hope Foundation.
The 19th Annual Meeting of the Alliance of ALS/MND Associationswas held prior to the Symposium on November 26-28, 2011. Organizations from around the world were represented by individuals who gathered to exchange innovative ideas for increasing awareness of ALS, improving care, and generating funding to support ALS research. The attendees heard presentations describing experiences and special programs, latest projects and strategies for fundraising, PALS support and advocacy. Sara Feldman, PT, reported on her meeting with the ALS clinical staff in Israel and her Assistive Technology presentation at the conference organized by IsrALS. Jeffrey Deitch, PhD, was selected as the Chairman-Elect of the International Alliance and his four-year term begins with the next annual meeting.
These meetings end with the Ask the Experts session where local residents have the chance to listen to presentations by experts in the field and ask questions. This session is sponsored by the ALS Hope Foundation.
November 29, 2011, was the Allied Health Professionals' Forum. This event is sponsored by the ALS Hope Foundation and Sara Feldman is on the program committee. Over 250 individuals attended this session which brings together allied health professionals from around the globe and allows them to learn from and network with each other. The varied and thought-provoking presentations covered a wide range of topics including respiratory management, advanced care planning, educational programs, support of staff, and electronic or assistive technology solutions for individuals with ALS/MND.
The 22nd International Symposium for ALS/MND was over the next three days. This Symposium brings together leading international researchers and healthcare professionals to present and discus key innovations in their respective fields. Terry Heiman-Patterson co-chaired the "Translating Evidence into Practice" session with Jeffrey Rosenfeld from UCSF, California. Sara Feldman presented on the results of her computer accessibility study "Computer accessibility:Recommending healthcare professionals as a resource for individuals with ALS."
The symposium includes a poster session as another means of exchanging information and sharing knowledge. The following posters were supported by members of our team: Jeffery Deitch and Terry Heiman-Patterson presented "TDP-43 pathology in mice expressing a very low copy number of the mutant human G93A SOD1 gene with a very slow disease progression." Lauren Scull, biomedical engineering student at Drexel /university, presented a poster on her work with the Brain Computer interface, "P300-based BCI use by people with ALS: A comparison of presentation methods and cognitive strategies" with Terry Heiman-Patterson and Sara Feldman as co-authors.
We left with the knowledge that information was shared, ideas were stimulated, partnerships, collaborations and friendships were formed, and the world was brought another day closer to a cure for ALS/MND.
Dr. Jeffrey Deitch accepting questions from the audience.
The 21st International Symposium on ALS/MND was held December 2010 in Orlando, Florida. The Symposium is organized by the Motor Neuron Disease Association and the International Alliance of ALS/MND Associations and the ALS Hope Foundation sponsors the Allied Professionals' Forum and the Ask the Experts session.
Leaders of organizations from around the world convene first for the International Alliance of ALS/MND Associationsmeeting. Dr. Jeffery Deitch presented an overview of RNA and the research surrounding it at this meeting. He was also elected as Treasurer of the International Alliance of ALS/MND Associations.
These meetings end with an Ask the Expertssession where local residents have the chance to come and listen to presentations by experts in the field and ask questions. This session was chaired by Dr. Jeffery Deitch.
Then one full day is devoted to the Allied Health Professionals' Forumwhich brings together allied healthprofessionals from around the globe. Sara Feldman was part of the program committee for this event. She and Donna Harris presented "Improving Communication Between the ALS Center and Caregivers in the Community."
The International Symposium for ALS/MND completes the final three days of meetings. Dr. Heiman-Patterson, co-chaired one of the meetings.
The poster session is 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 and Dr. Jeffrey Deitch presented "Neuropathology of Mice Expressing a Very Low Copy Number of the Mutant Human G93A SOD1 Gene Associated with ALS" with support from co-authors Rachel Masel and K. Kocher. Vincent Petaccio, a biomedical engineering student at Drexel presented a poster on his work with the Brain Computer Interface, "Comparing the Efficacy of the Checkerboard Paradigm Versus the Row/Column Paradigm in a P300-Based Brain Computer Interface in Individuals with ALS" with Dr. Heiman-Patterson and Sara Feldman as co-authors.
Dr. Jeffrey Deitch presenting his lecture to the International Alliance of MND Associations.
Berlin, Germany was the setting for the 20th International Symposium on ALS/MND organized by the Motor Neuron Disease Association in cooperation with the International Alliance of ALS/MND Associationsheld in December 2009. Terry Heiman-Patterson MD, Jeffrey Deitch PhD and Sara Feldman PT attended the symposium. The Allied Professionals' Forum and the Ask the Experts sessions were sponsored by The ALS Hope Foundation.
The International Alliance of ALS/MND Associationsmeeting 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' Forumbrings together allied healthprofessionals 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" withsupport 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.
The people that we met, the connections that we made, the individuals that inspired us and the knowledge that we were both able to leave and take away will forever stay with us. The experience reaffirms our drive and desire to continue this fight against ALS.
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.