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).

Watch video from the hearing here.

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.