MDA/ALS Educational Seminar

The Muscular Dystrophy Association (MDA) and ALS Hope Foundation were pleased to offer a seminar on topics related to ALS on Saturday, July 15, 2017 at Temple University Hospital’s Erny Auditorium. The day was divided into five sessions related to varying aspects of ALS care and several members of the MDA/ALS Center of Hope Team presented.

Ken Slavik, Family Support and Clinical Care Coordinator for the Eastern PA/Delaware MDA, was the moderator for the day. The first speaker, Sara Feldman, PT, DPT, ATP, discussed assistive technology as a way to maintain independence. She reviewed the many types of mobility devices available and when each might be appropriate.

Kelli Smith, RN, presented valuable information about nutrition and ALS including the best foods to prevent choking and how to conserve energy for mealtimes. She also provided smoothie recipes and online resources to help make dietary adjustments a little easier. The video on PEG tubes cleared up some misconceptions about making the decision to transition to a feeding tube. This video and other educational videos can be found on our YouTube channel.

The afternoon session started with Dr. Terry Heiman-Patterson providing an update on ALS research. She discussed the importance of gene discovery in ALS, mentioning more than 30 have been identified since 1993 and additional genes continue to be identified. This is a critical tool in the fight against ALS. She also discussed biomarkers as a way to measure the progression of the disease and some of the challenges in conducting clinical trials including delayed diagnosis, genetic heterogeneity, multiple targets and enrollment and retention. One of the most interesting portions of the presentation was on stem cell research. Dr. Heiman-Patterson encouraged the audience to ask questions and to stay informed about the newest developments in ALS research.

Dan Mergner, RT was the next presenter and chose to delve into the use of the word inspire in both the respiratory and psychological sense. He fielded questions and encouraged participants to contact him at any time if they could use assistance navigating respiratory care.

Nancy Briggs, family therapist, was the final speaker of the day. She discussed the ways in which families cope when a loved one is diagnosed with ALS. Caregivers should not overlook their own mental health; small adjustments can help maintain a healthy relationship. She suggested taking breaks as short as 10 minutes, laughing, and not being afraid to say “no”. Preserving familial relationships is key and while it is a challenging, it can be an opportunity to strengthen those relationships that may have fallen to the wayside.

The ALS Hope Foundation thanks everyone who was able to make it out to the event and thanks those who followed our live Twitter and Instagram feeds. We are grateful to this dedicated community for striving to be as involved and educated as possible. We are also thankful to the MDA for hosting this event. As most of our speakers mentioned, collaboration and education are key to providing care and a cure for ALS!

RESNA 2017 AT Innovation Across the Lifespan

The Rehabilitation Engineering and Assistive Technology Society of North America (RESNA) held its annual conference, RESNA 2017 AT Innovation Across the Lifespan, in New Orleans June 26-30, 2017.  As an Assistive Technology Professional, Sara Feldman, PT, DPT, attends the conference as part of her certification and to learn about the technology that is not only available today, but also on the horizon for the future. The attendees include Rehab Engineers, PTs, OT, SLPs, researchers, suppliers, manufacturers, end users and other individuals working with assistive technology.

The week began with two half day Instructional Courses. The first was on Electronic Aides to Daily Living (EADLs) and was given by Brian Burkhardt, a Rehab Engineer with McGuire Veterans Medical Center in Richmond, VA, and Antoinette Verdone, a Rehab Engineer from ImproveAbility. They provided an excellent overview of the many products that are available both as commercial AT products dedicated to EADLs and consumer products that are not specifically geared toward people with disabilities but are being used as environmental controls.

The afternoon session was on 3D printing and how people are beginning to use it for custom AT options. Ben Salatin, a Rehab Engineer also with McGuire VA, described the steps involved with using a 3D scanner, design software and the printers. The most common materials used are plastics, but industry is using 3D printers for intricate metal work and biotech is experimenting with human tissues! Brian Burkhardt presented some of the work he has been able to do at the VA to customize or adapt devices to increase the ease of use for people. These examples included adapted utensils; an iPad key guard; a handle to turn a knob more easily; and joystick adaptations. They are currently working on a lightweight custom wrist splint. Richard Pasillas, of Cushmaker.com, showed examples of wheelchair positioning pieces they have custom printed for individuals…and even wheels/wheelchairs for dogs!

The conference was kicked off by Alex Mihailidis, PhD, PEng, whose Plenary presentation, “Disrupting the Aging and AT Landscape,” challenged everyone to rethink the current AT landscape for older adults and the aging population. He is the Scientific Director of AGE-WELL Network of Centres of Excellence, which focuses on the development of new technologies and services for older adults. His message is that the most disruptive and inspired ideas are the ones that move the field forward and he challenged us to not just focus on the current AT needs, but to look to, and design for, the future.

The next three days were filled with a variety of presentations. Here are few of the highlights of the meeting: 

Our friends at Inglis House, also here in Philadelphia, gave a great presentation “Is there an Echo in Here?” on using the Amazon Echo as part of their independent living smart home design.  Charles Sammartino and Michael Strawbridge described how they set up a smart apartment for individuals to increase their independence.

In the “Introduction to the Internet of Things,” LeighAnne Davis, Duke University, explained Smart Homes, Smart Communities and Smart Health and how they were different, but how they were connected, too.  A Smart Home is one that has automation controlling various actions such as turning on/off lights, controlling the thermostat, or playing the television or music. This technology can really assist someone with limited physical function/ability. A Smart Community is when there are systems in place that can make decisions based on traffic flow or weather that are set-up to run automatically. This would be helpful for determining where handicapped/accessible parking is available. Smart Health is a way of monitoring your health through devices, similar to a Fitbit. An example of the systems working together in the future: You aren’t feeling well and your Smart Health sensors pick-up that you are dehydrated. When you go to the kitchen, you receive a message from your Smart Home to drink water and the refrigerator measures the amount you drink during the day. A message is sent to your daughter, which includes the fastest route to get to your house based on traffic through the Smart Community. Exciting or scary?

A panel discussion on Emergency Preparedness told the Louisiana story of Hurricane Katrina and the changes made to their system in the aftermath. A voluntary organization, Emergency Management for Disabled and Aging Coalition (EMDAC) organized following Katrina and Rita. They had recommendations for others who work with people dependent on AT including not only education for the users themselves, but also for the local first responders and shelters. Part of the presentation was given by two amazing women, Jessica Michot and Angela Lorio, from Trach Mommas of Louisiana. Their stories come from their experience of having to evacuate and not knowing what to do. They never wanted another parent to go through that alone.

There were a few great research and clinical projects presented their work in progress, too. CARE-RATE, a website designed to make finding information on the web easier and more accurate was presented by AGE-WELL investigator Jen Boger. Kudos to their group for all of the hard work and thoughtfulness they are putting into this project! Kamilya Gosmanova, from Albany, NY, described their work on getting BCI access to the MyTobii software and device. They are having some success and are continuing to move forward. There were student designs including a U-shaped adaptor to an electric toothbrush; steps to attach to a wheelchair for ease of access from the floor; and an adjustable height grab bar for public restrooms

Blair Casey accepts the Honorary Fellow Award on Steve Gleason's behalf.

An additional highlight of the meeting was the presentation of an Honorary Fellow Award to Steve Gleason for his work in moving assistive technology forward. Steve Gleason was diagnosed with ALS in January, 2011, and has been a strong advocate for AT during his journey. Blair Casey accepted on his behalf, and spoke passionately about the difference AT can make in the life of someone with ALS.

Steve Gleason has been quoted as saying, “Until there is a medical cure for ALS, technology will be that cure.” This conference gave attendees the tools they need to help make make a difference using technology. 

Hope Advances - Radicava™ Approved to Treat ALS

A message from Dr. Terry Heiman-Patterson

On Friday, May 5, Radicava was approved by the FDA for the treatment of ALS. As the first drug approved in more than 20 years, Radicava gives hope to our entire community - clinicians, researchers, and people with ALS - that we are making progress in slowing down this disease. Our dream is to stop it in its tracks.

The trial history of Radicava in Japan (trials narrowed their focus to study PALS early in disease progress) shows us the value of exploring responder groups in studies of new drugs. The fact that testing was focused on a subset of PALS does not mean that the drug does not work in others, but simply allows us to detect an effect that might otherwise have been missed. 

This is fast becoming the age of individualized medicine. It will require that we understand disease mechanisms and individual differences in active disease processes and use this information to target drugs to PALS that we predict will respond. The discovery of ALS biomarkers (measurable, physiological signs that change as the disease progresses) will be critical to this process. This underscores the importance of ongoing efforts in the research community to collect tissue samples and DNA to define individual differences between PALS so that we can enhance our understanding of this complex, heterogenous disease. 

We are on the precipice of major breakthroughs! This is clearly a time for celebration of the approval of Radicava and a new era in ALS therapeutic development.

Both the FDA and MT Pharma America are to be commended for their commitment to ALS and to accelerating the drug approval process. The MDA/ALS Center of Hope at Temple University will be working actively to set up a process for receiving Radicava once it is available.

For more information, click here. 

For questions about Radicava™, please feel free to contact the following services set up by the company:

Searchlight Support™ at 1-844-SRCHLGT (1-844-772-4548)

You can also sign up to receive updates about Radicava™, including when it will be available for your healthcare provider to prescribe at: https://www.radicava.com/patient/

BREAKING NEWS: Radicava (edaravone) Approved by FDA

BREAKING NEWS:
The US Food and Drug Administration has approved Radicava (edaravone) to treat people with ALS in the United States. 

This is important news for the ALS community. Radicava (edaravone) was approved today by the FDA to treat people with ALS. “After learning about the use of edaravone to treat ALS in Japan, we rapidly engaged with the drug developer about filing a marketing application in the United States,” said Eric Bastings, M.D., deputy director of the Division of Neurology Products in the FDA’s Center for Drug Evaluation and Research. “This is the first new treatment approved by the FDA for ALS in many years, and we are pleased that people with ALS will now have an additional option.”

We at the ALS Hope Foundation would like to congratulate MT Pharma America on this latest development. The neurologists at the MDA/ALS Center of Hope clinic are looking forward to having a new treatment option. For more information on Radicava, please visit their website, www.radicava.com, or read the press release.

We also want to thank YOU for donating and advocating for people with ALS and their families, not only during ALS Awareness Month, but everyday. You helped make this possible! Thank you for your support! 

New Video Series Aims to Provide Visual Aid in Understanding ALS

ALS Hope Foundation is pleased to announce a brand new Educational Video Series! The goal of the series is to provide valuable educational tools for people with ALS (PALS) as well as their caregivers. The 14 video series covers practical advice ranging from how to increase computer accessibility to advice for supporting nutrition. In one video, a staff member touts the benefits of using PEG (Percutaneous Endoscopic Gastrostomy) tubes to assist those who have difficulty eating. The video aims to provide a detailed explanation of the process, starting with when to consider a PEG tube to a demonstration of the physical device, followed by best practices for maintenance. The information is presented in an easy to understand format in a concise 8 minute video. The aim of the series is not to provide all possible data on the subject but to deliver easily accessible and relevant facts to help PALS and caregivers make informed decisions.

Other practical videos include splinting and seated leg exercises as well as facts regarding speaking and swallowing difficulties. The information in these videos is paramount to the Foundation’s goal to provide educational support. The videos are free and easily shared so that the public, as well as PALS and caregivers, can learn more about the disease and the steps taken to combat its effects.

To view the videos, follow this link. Remember to subscribe to our YouTube channel by hitting the red Subscribe button.

The beginning of a beneficial partnership: Inaugural Gala of Hope commemorates the ALS Clinic's move to Temple Health

ALS Hope Foundation's first annual Gala of Hope was a resounding success! Thank you to our PALS, friends, families and supporters who came out to the event. The evening began with a cocktail hour where guests chatted with friends old and new while enjoying delicious hors d'oeuvres. The party migrated into the ballroom where shimmering chandeliers and champagne-inspired decorations greeted guests as they took their seats. 

Dr. Terry Heiman-Patterson opened the evening by thanking MT Pharma for their generous sponsorship of the Gala as well as thanking Robert Rosti and Jean Hubble for attending the event on their behalf. She also extended a warm thanks to Temple Health for their new support of the MDA/ALS Clinic of Hope and the ALS laboratory. She stressed the importance of collaboration and teamwork in fighting ALS as working together is the only way to find a cause and cure for this devastating disease.

Dr. Patterson introduced our 2016 Season of Hope ambassador, Dr. Jeffrey Kramer, to speak about his experience with ALS. The speech was marked by Dr. Kramer's quiet strength and dignity in dealing with the disease. It took a great deal of courage to speak about such sensitive issues in front of a room full of people. We thank him again for sharing his story. 

Remarks from Dr. Ausim Azizi, Professor and Chair of the Department of Neurology at Temple University Hospital and Marissa Lozano, Associate Director of Family Support and Clinical Care from the Muscular Dystrophy Association followed. Collaboration and teamwork were the predominant themes; we appreciate their partnership and thank them for their generosity and dedication.

We cannot thank our guests enough for making an effort to attend this year's Gala. It gives us strength to know we have such passionate and thoughtful individuals supporting our PALS and ALS Hope Foundation. Together, we are keeping Hope on the Horizon!

Photos from the event can be viewed here. Keep an eye on our website for information about next year's event!

Dr terry heiman-patterson (left) poses with dr. jeffrey Kramer, 2016 season of hope ambassador.

The 27th International Symposium on ALS/MND

The 27th International Symposium on ALS/MND was held in Dublin, Ireland this year.  Terry Heiman-Patterson, MD and Sara Feldman, DPT, ATP, spent the week with approximately 1200 scientists, clinicians, association members and PALS/CALS attending meetings, sessions, posters and presentations. This symposium is put on every year by the MND Association of England, Wales and Northern Ireland and was hosted this year by the Irish MND Association.

The week of meetings began December 4, 2016 when Chairwoman Carol Birks (MND Australia) opened the International Alliance of ALS/MND Associations meeting. The Alliance brings together ALS/MND organizations from around the globe.  The ALS Hope Foundation has been a member of this international group of ALS/MND organizations since about 2001. We are pleased to announce that Sara Feldman was re-elected to the Board of Directors for another three-year term. Follow this link to the Alliance website to read more about the meeting and the Alliance. 

The Ask the Experts event is held the second day of the meetings. This year’s panel included Dr. Jonathan Glass (Emory), Dr. Jeremy Shefner (Barrows) and Dr. Jan H. Veldink (Utrecht). Click here for the archived session.  Thanks to the ALS Association, this event was lived streamed so people unable to attend the conference were able to participate in the discussion.

This year, during the second day, the final judging of the Prize4Life and ALS Associations AT Challenge took place. Terry Heiman-Patterson was honored to be a member of the judging panel for this prize.  Click here to find out more about this challenge and find out who won!

Next, the Allied Professionals Forum was held on December 6, 2016. This is a day-long session developed for Allied Health Professionals and the ALS Hope Foundation is proud to be a sponsor again this year. Sara Feldman is co-chair along with Steve Bell (MND Association).    The presentations from the APF can be found here.

Last, but not least, the 27th International Symposium on ALS/MND took place on December 7-9, 2016. Sally Light (MND Association) opened the Symposium and IMNDA welcomed everyone in attendance. Dr. Heiman-Patterson was a member of the Scientific Review Board for this year’s conference and was on the abstract selection committee; Sara Feldman was on the judging panel for the clinical poster prize.

Dr. Heiman-Patterson presented 2 posters, “Evaluation of an ALS Staging System in a US Population,” and Understanding the Use of Noninvasive Ventilation in the Treatment of ALS: Results of an International Physician Survey.” Sara Feldman, PT, DPT, ATP, presented a poster with Peggy Allred, PT, DPT (Cedars-Sinai) on “Common Powered Mobility Components for the ALS/MND Population.”

Dr. Heiman-Patterson chaired the final session of the Symposium with Kevin Talbot (UK).

Next year, the 28th International Symposium on ALS/ MND will be held in Boston, Massachusetts and the ALS Hope Foundation will be co-hosting with ALS Therapy Development Institute.

The meetings were stimulating and inspiring; motivating and thought-provoking; encouraging and promising. Scientists, clinicians, associations, PALS, CALS, everyone was present and everyone participated in the conversation. We know that for PALS, time is limited and precious and we all feel the urgency. Know that at any given moment, someone, somewhere around the globe is working on better treatment, improved care, and to find a cure for ALS/MND. 

The Temple University MDA/ALS Center of Hope

Things are changing for the MDA/ALS Center of Hope! 

We are pleased to announce that on December 1, 2016 we will be moving to Temple University at the Lewis Katz School of Medicine. Temple University is committed to helping us to continue to provide the best care possible while raising the bar even higher.  To this end, Temple is helping to provide additional breadth to our program with clinic pulmonary services, genetic services, case management and counseling, and wellness programs to supplement our state of the art care. Of course we will continue to have physical and occupational therapy, speech therapy, nutrition, respiratory therapy, nursing, and DME. 

Our MDA colleagues and the ALS Hope Foundation staff will also be there to help support our clinic.  Everyone at Temple, as well as our team members, are excited about the move as we are certain it will enhance our ability to improve the care that we are able to deliver while continuing the friendly and warm feeling that we try to create during clinic visits. The MDA/ALS Center of Hope will be the first step in the development of a Neurodegenerative Disease Institute and our new partners at Temple are engaged and working hard to make it a success. We are looking forward to welcoming you to our new facility and will rely on your input to make our center jump to the next level.

The Temple University MDA/ALS Center of Hope will be located at:
 
Boyer Pavilion, 5th Floor
3509 N Broad St
Philadelphia, PA 19140
Convenient Valet Parking is available at the lobby of the Boyer Pavilion. 

The appointment number will be 215-707-3040

FDA Accepts Mitsubishi Tanabe Pharma’s NDA Filing for Edaravone to Treat ALS

Mitsubishi Tanabe Pharma has announced that the FDA has accepted their NDA filing for Edaravone to treat ALS. Read more about what this means for our PALS by clicking the link below.

http://www.mt-pharma.co.jp/e/release/nr/2016/pdf/e_MTPC160830_RC.pdf