17th Annual NEALS Meeting

The 17th Annual Northeast ALS Consortium (NEALS) meeting was held October 2-4, 2018 in Clearwater, Florida. NEALS now has over 100 member sites, including centers in Lebanon, Israel, Mexico, Canada, Australia and Italy, and there were researchers, clinicians and allied health professionals from throughout the country in attendance.

Dr. Terry Heiman-Patterson, Dr. Justin Kwan, Dr. Ossama Khazaal, Sara Feldman, PT, DPT, and Kathleen Hatala, RN, represented the MDA/ALS Center of Hope at Temple University.

The team presented the following posters, click on the link to see a pdf of the:

Physical Therapy Evaluation in the ALS Clinic: A Survey of Clinical Practice Patterns

Measuring the Rate of Decline in Pulmonary Function in ALS from the ALS Nutrition/NIPPV Study Group

Validation of a Staging System in ALS: Comparison of the US and European Populations

The mission of NEALS is to rapidly translate scientific advances into clinical research and new treatments for people with ALS/MND. To this end, they offer a full day of Outcome Measures and Site Management training. As part of the research team here at Temple, Sara Feldman and Kathleen Hatala attended and assisted with the training sessions and attended multiple study specific and committee meetings. It is an excellent setting to discuss issues and share information!

The General Session started the following morning with an update of the past year. Then the presentations started with a Right to Try and Expanded Access discussion lead by James Russell (Lahey) and Jinsy Andrews (Columbia) to inform the audience of the differences and implications. The next session was updates on NEALS trials and included Timothy Miller’s (WashU) update on C9ORF72 Natural History and Biomarkers; Jeremy Shefner (BNI) on ALS Testing Through Home-based Outcome Measures; Brian Waigner (MGH) on the Retigabine study; Shafeeq Ladha (BNI) on the Tocilizumab study; and Jennifer Roggenbuck (OSUMC) on the results of a survey on Genetic Testing Practice at NEALS sites.

The afternoon session was dedicated to the Abstract Platform presentations. These included Emily Plowman (UFla) Best Clinical Screening Tools for Early Detection and Accurate Monitoring of Dysphagia in ALS: Development of the Physiologic Risk Index of Swallowing Impairment; Richard Smith (CNS) Computer Assessment of Speech in a Successful ALS Treatment Trial; Jeremy Shefner (BNI) Use of a Time to Event Strength Measure in a Phase 3 ALS Trial; Stephen Goutman (UMich) High Plasma Levels of Organic Pollutants Negatively Impact Survival in ALS; K Kukulka (UMissouri) on Framing a Palliative Approach to ALS: Eliciting Stakeholder Perspectives on the Realities of Living with ALS; Colin Quinn (UPenn) onInteruser Reliability of the Penn UMN Score in ALS; G Sadri-Vakili (MGH) Cromolyn Sodium Treatment is Neuroprotective and Delays Disease Progression in SOD1G93A Mouse Model of ALS; and L Hochberg on BrainGate Pilot Clinical Trials: Harnessing Motor Cortical Signals for the Control of Communication Devices by People with ALS. The poster session followed.

The next morning session then moved on the Science Update and was chaired by Robert Brown (UMass), Jeffrey Rothstein (Johns Hopkins) and Timothy Miller (WashU). The presentations then started with Bruce Miller (UCSF) discussing ALS and FTD; Orla Hardiman (Trinity, Dublin) adding her thoughts on Cognitive and Behavioral Changes in ALS; then Christopher Coffey (UIowa) presented an innovative statistical design and analysis.

Sara Feldman and Peggy Allred stepped down as the co-chairs of the Physical Therapy Committee which they co-founded in 2012.

When the NEALS meeting ends, the Clinical Learning Institute (CRLI) begins. The goal of the CRLI is to educate and empower people with ALS to become “Research Ambassadors.” Dr. Heiman-Patterson is one of the CRLI instructors and is looking to bring it to the Philadelphia region again.

RESNA 2018 #IngenuityATWork

The Rehabilitation Engineering and Assistive Technology Society of North America (RESNA) held its annual conference, RESNA 2018 #IngenuityATWork, in Crystal City, VA July 11-15, 2018.  Sara Feldman, PT, DPT, ATP, the Assistive Technology Professional at the MDA/ALS Center of Hope, attended the conference and shares her experience:

The Annual RESNA Conference is an amazing conference with attendees that include Rehab Engineers, PTs, OT, SLPs, researchers, suppliers, manufacturers, users and other individuals working with assistive technology. I have been a member of RESNA for over ten years, and attend the conference to keep abreast of the technology that is available today as well as to learn about the technology that is on the horizon for the future.

The pre-conference began with two half day Instructional Courses. The first was on “Using Brain-Computer Interface (BCI) as an Access Method” and was given by Theresa Vaughan, National Center for Adaptive Neurotechnologies; Peggy Dellea, Boston Children's Hospital; and Marcia Scherer, Institute for Matching Persons and Technologies. They provided an excellent update on the state of the BCI system in the US today as well as allowed for hands on time for trial and demonstration. We have been working with the BCI at our clinic since 2001, so it was great to see the enthusiasm of the other participants and see what research the other centers were engaged in. One really interesting research project is work they are doing in collaboration with TobiiDynavox to connect the two systems. We are all looking forward to hearing how that is progressing!

The afternoon session was on “Hands-free Tech, Access from A to T: A Comprehensive Discussion of High-level, High-efficiency, Hands-free Access” given by James Gardner and Olivia Erickson, University of Utah. The session included hardware and software options for the computer; hands-free access to phones; the latest in Apps; home automation; and mounting systems. Watch for a more detailed description of the products shown on our website in the near future! Some of them are also included in the information below.

The main conference then began with the Plenary Session, “AT Around the World” with speakers from Australia, Brazil and the UK. Natasha Layton, PhD, the President of Australia Rehabilitation and Assistive Technology Association (ARATA), Evandro Guimaraes, PhD, MS, AT, Ministry of Human Rights, General Coordinator of Assisitve Technology for the Secretariat of People With Disabilities Rights (Brazil) and Lord Chris Holmes, of Richmond MBE (United Kingdom) Co-chair of the All-Party Parliamentary Groups on Assistive Technology made up the panel. They each spoke on the state of AT programs and advocacy in their own countries and the importance of organizations such as RESNA.

The RESNA conference was filled with many excellent presentations. Here is a description of them with a few links for you to check out!

“Introduction to Accessibility of Phones, Tablets and Computers” was presented by four occupational therapists from MedStar National Rehabilitation Network in the DC area. They discussed options from Low Tech (Handizap 6th Digit, Shapedad) to High Tech (QuadJoy, Glassouse, Tecla-e). This was my first introduction to Sesame Enable, a new App that allows fully hands free access of an Android phone or tablet!

There were two presentations on Home Automation and Environmental Control, each with a slightly different focus. The use of consumer products for home automation and environmental control was demonstrated using the Amazon Echo, one presentation (“Amazon, Google and Bears, Oh My” by Antoinette Verdone, ImproveAbility, and Brian Burkhardt, McGuire VAMC) giving a broad overview and one (“Environmental Control Redefined” by Charles Sammartino and Arman Rowshan, Inglis House) using a case study. It is amazing how these new smart speakers are making environmental control more accessible!

The Access and Communication Technology Special Interest Group held their workshop on “Sharing Solutions, Igniting Ideas” on new, innovative products, either commercially available or built by them or their students. The BreakBoundaries bed control caught my attention as a new option for alternate access to the bed controls.  The Vysor App allows you to control your Android phone via your computer. The JBL Clip 2 blue tooth speaker is a durable, waterproof, portable speaker you wear on a lanyard around your neck so your voice appears to be coming from you versus your device. The Gboard App can use a Morse code keyboard for iOs and Google! They also shared the Craig Hospital Assistive Technology website.  

In “AT Solutions for Individuals with Motor Impairments,” the team from Shepherd Center in Atlanta and Courage Kenny Rehab in Minneapolis discussed the variety of ways they help the individuals that they see.  New information included: The Plantronics Voyager Legend is a completely hands-free blue tooth earpiece. The Bixby App allows you to use a Samsung phone hands-free, including hanging up! The Honeybee is a new proximity switch. Instamorph is a moldable plastic. They also shared their Pinterest site with us!

The “Novel Clinical Application of Virtual Reality Technology Through Community Partners” was a big hit. Erin MacNamara and Brian Ricks QLI Omaha discussed and demonstrated Virtual Reality. I even had the chance to try it!

During the “Emerging and Innovative Technologies Show and Tell” the use of 3D printing at the Hunter Holmes McGuire VA in Richmond VA was brought up and there was a lot of interest in how people were using it to help out clients. Here is a video showing their work.

During the Poster Session, I had the chance to catch up with Adriana Klein, an OT from Brazil that we first met back in 2006 when the ALS Hope Foundation and ABrELA participated in a Partnership Program together. It was great to see both her and the work she is doing on an App for Seating Devices Prescription to be used by therapists in Brazil.

The final Plenary Speaker was Gregg Vanderheiden. He discussed the previous work that he and his team had done including ensuring that accessibility features stayed in the Windows operating system! His advice to newcomers to the assistive technology field was simple:

“You will never regret what you did with your life when you spend it in service to others in a way you enjoy.  Just pick something (anything) you love that helps people and do the best job you can. You will never be sorry.”

Mission Story Slam

Mara Nissley, Communications and Events Manager for ALS Hope Foundation, won the $100 second prize for Mission Story Slam. on May 22 The event was hosted by PWPVideo at Yards Brewery  in Philadelphia. The evening was an opportunity for representatives and supporters from various non-profits and triple bottom line companies to tell their story about "that moment". Participants were not allowed to use notes or props and were restricted to telling their story in 5 minutes or less. The 3 judges then determined the first prize, $250 award and the second prize, $100 award. 

Click the video on the left to view Mara's winning story about her grandfather. We are so grateful to have had this opportunity during ALS Awareness Month to share our story. Well done to all the other participants and to the wonderful individuals and organizations making a difference in the Philadelphia area! 

In June, Mara was a guest on The Greater Good Project on 1520 WCHE in West Chester to talk about her experience. She was joined by the first prize winner, Karen Singer, the creator of the story slam, Michael Schweisheimer and Greater Good Project host Donna Saul. They had a great conversation about the stories they shared as well as the power of storytelling, especially in the non-profit world. 

We encourage everyone, even though it might be hard, to share their experiences. Stories help people connect on a personal level and make it easier to spread awareness and promote support. 

You can listen to the full broadcast here.

The next Mission Story Slam will be held on September 28th, 2018 at Yards Brewing Company in Philadelphia. You can purchase tickets here and learn more about Mission Story Slam here. 

17th Annual Research Update and Awards Luncheon

The 17th Annual Research Update and Awards Luncheon was held on Sunday, May 6, 2018 at the Philadelphia Marriott West in Conshohocken. We are grateful to our friends at InfuCareRX for their generous sponsorship of this year’s event!

This event is an opportunity for everyone to learn more about the current state of ALS research and for us to thank our wonderful supporters from throughout the year. Nearly 160 people attended this year’s event! We are grateful for the amazing level of support our community has shown our organization.

Our keynote speaker, Dr. Jeffrey Rosenfeld, presented “Understanding ALS: Sorting Apples and Oranges”. Dr. Rosenfeld has the unique gift of translating complicated science and data into easily understandable language. He suggested that ALS may not be just one disease but in fact a combination of diseases and if this is true, we need to approach finding treatments and a cure in an entirely new way. His presentation can be found on our Youtube channel shortly.

Dr. Terry Heiman-Patterson continued the research discussion by discussing the basic research occurring at the Neurosciences Lab at Temple Health. She is starting an exciting new collaborative project that will involve researchers from around the country. Enrollment is also open for several clinical trials for new treatments and therapies for ALS at the MDA/ALS Center of Hope.

The awards portion of the day is our way of personally thanking our supporters. Todd Kelly, who has been greatly involved with our organization over the past few years, was the recipient of the Sunrise Award. His incredibly poignant speech at our 2nd Annual Gala of Hope moved us all to tears. He has participated in our Hope Educates program, told his story for our Season of Hope, and shows up at many different events! We are truly grateful for his dedication and commitment.

The Courageous Heart Award is given to those who have taken a proactive role in the fight against ALS, supporting both people living with ALS and the ALS Hope Foundation, while courageously battling ALS themselves. Our awardees this year were Steven Anoia, Jack Buzby, Joy Carducci, Ross Doughty, Tom Rodgers, John Sweeney, Patricia Vitkow and Brian Zubatch. Mr. Sweeney asked that his wife, Jennifer, receive his award instead and David Buzby received the PopPop’s best helper award.  

Our Community Heart Award was presented to Avanir Pharmaceuticals, Greenstar Exteriors, PatientsLikeMe and Stuart Wallet, DDS & Karen Wallet, DMD. Each of these community partners have shown outstanding support of our organization over the past year. Their partnership enables us to strengthen ties to the community as well as grow our programs and services.

The Promise of Hope Award is presented to young people who are making a change in their community through advocacy for people with ALS. This year’s recipients were Maria Lombardi, who participated in our Hope Educates program to learn more about ALS for her school project, and Dana Sweeney, who designed a fully functional ALS research facility, clinic and office space for her Capstone Senior Design project at a Philadelphia University. These young ladies have shown a level of maturity and understanding well beyond their years. They will undoubtingly continue to be change makers and make a lasting impact on the ALS community.

Thank you so much to everyone who came out as well as all the people who work with us to continue the care and search for the cure of people with ALS. Photos from the event can be viewed here. 

Philly Ad Club Give Back Breakfast

Mara Nissley, Communications and Events Manager for ALS Hope Foundation, and Sara Feldman, Physical Therapist at the MDA/ALS Center of Hope, attended the Give Back Breakfast sponsored by Philly Ad Club held at 6abc studios April 19, 2018. 

The event was an opportunity for six non-profits to receive free marketing advice from a range of young marketing professionals. We were honored to have been selected as an organization to attend the event and are looking forward to implementing the advice we were given!  

Thank you to everyone at Philly Ad Club for having us out!

2nd Annual Gala of Hope

The second Annual Gala of Hope took place on Friday, January 26, 2018 at Water Works in Philadelphia. Thank you to all of our friends and supporters who came out to mark the first anniversary of our move to Temple Health. 

Dr. Terry Heiman-Patterson welcomed our guests for the evening's main program. She noted how well the MDA/ALS Center of Hope has settled into its home at Temple Health and thanked representatives from Temple and MDA for making the transition run smoothly. She also thanked this year's  sponsors: Mitsubishi Tanabe Pharma America, PatientslikeMe, InfuCareRx, Ramona and Frank Gwynn and Soleo Health. 

After dinner, the program began with remarks from Ken Slavik, Family Care Specialist at the Muscular Dystrophy Association.  Slavik noted that collaboration and cooperation are the keys to providing for the care and cure of people with ALS. 

Dr. Paul Katz, Acting Chairman of the Department of Neurology at Temple Health, remarked on Dr. Terry Heiman-Patterson's valuable contributions in the field of neurology, ALS research and collaboration on the national and international level. He is delighted that Dr. Heiman-Patterson, as well as Dr. Deboo and Dr. Kwan, have joined the Temple Health team and are making a difference in the lives of PALS and their families. 

Our final speaker of the evening was H. Todd Kelly, a person living with ALS. Kelly began by reciting a poem by Adam Lindsay Gordon: 

“Life is mostly froth and bubble,
Two things stand like stone.
Kindness in another's trouble,
Courage in your own.”

He said it is easy to get caught up in daily life: "When all this is swept away, what sustains us is kindness and courage." We cannot thank Mr. Kelly enough for sharing his story with us. Please watch his full length speech on our YouTube channel. 

This year's event raised over $50,000 to support the MDA/ALS Center of Hope! We are honored to have such wonderful supporters in our corner. Each year we are reminded just how remarkable it is to have so many people keeping Hope on the Horizon. 
 

Photos from the event can be viewed here. 

28th Annual Symposium on ALS/MND

The 28th International Symposium on ALS/MND was held in Boston, Massachusetts this year and the ALS Hope Foundation was honored to be co-host of the conference along with ALS-TDI.  This event attracted record numbers, with over 1300 attendees, including scientists, clinicians, association members and PALS/CALS from around the world. This symposium is put on annually by the MND Association of England, Wales and Northern Ireland and is a full week of meetings, presentations and posters. Dr. Heiman-Patterson, Dr. Justin Kwan, Sara Feldman, Donna Harris, Kathleen Hatala, Tee Ropars and Mara Nissley from the team all attended and many volunteered!
 
The International Alliance of ALS/MND Associations meeting, held on December 5 and 6, 2017, brought 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 2001 and Sara Feldman, PT, DPT, ATP is on the Board of Directors.  Click here for more information on the meeting and the Alliance.
 
The Ask the Experts event was held the second day of the meetings, December 6, 2017; this year’s panel was moderated by Dr. Terry Heiman-Patterson and included Dr. Jonathan Glass (Emory), Dr. James Berry (MGH) and Dr. Steven Perrin (ALS-TDI).  Thanks to ALS-TDI and ALSHF, this event was lived streamed so people unable to attend the conference were able to participate in the discussion.
 
The Allied Professionals Forum was held on December 7, 2016. This was a day-long session developed for Allied Health Professionals and the ALS Hope Foundation has been a committed supporter for many years. Sara Feldman is co-chair along with Steve Bell (MND Association). Please see the videos of the presentations here including Sara Feldman’s presentation on “Making Your Home a Smart Home Using Consumer Based Products.”
 
The 28th International Symposium on ALS/MND took place on December 8-10, 2017. Sally Light (MND Association) opened the Symposium and ALS-TDI 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. She chaired the session on Autonomy and Quality of Life with Dr. Orla Hardiman (Ireland). Sara Feldman had the opportunity to tour Steve Saling ‘s amazing home in the Saling-McDonald Residence just outside of Boston.  Kathleen Hatala and Tee Ropars volunteered for the Clinical sessions and kept the people moving and the microphones ready. See Mara Nissley’s write-up of her experience!
 
The International Symposium on ALS/MND is the largest medical and scientific conference specific to ALS/MND and this year leading researchers, clinicians, PALS/CALS, and associations all gathered to collaborate and share; to network and connect; to plan and dream; to support and grow. We all leave with a renewed sense of purpose, fresh ideas, and that ever present urgency. For we know time living with ALS/MND is all too precious and short.
 

Dr. Heiman-Patterson Honored with Diamond Award

The 17th Annual MDA's Wings Over Wall Street Gala was held on October 26, 2017 in New York City. We are pleased to announce Dr. Terry Heiman-Patterson received the the Diamond Award at this amazing event. The award is named in honor of Toni Diamond, Warren J. Schiffer's late wife, and is given to a "scientific leader dedicated to the eradication of ALS." Dr. Heiman-Patterson has spent the majority of her career in service to people with ALS and continues to work to provide the highest level of care. 

Pat Quinn, pictured above, was honored with the Wings Spirit Award for his efforts advocating for people with ALS through the Ice Bucket Challenge and other initiatives. We commend both of them for their committment to the ALS community!

16th Annual NEALS Meeting Recap

The 16th Annual Northeast ALS Consortium (NEALS) meeting was held October 3-5, 2017 in Clearwater, Florida. NEALS now has 122 member sites and there were researchers, clinicians and allied health professionals from throughout the country in attendance.

Dr. Terry Heiman-Patterson, Sara Feldman, PT, DPT, and Kathleen Hatala, RN, represented the MDA/ALS Center of Hope at Temple University. Dr. Terry Heiman-Patterson is co-chair of NEALS along with Dr. Jonathan Glass of Emory University.  Sara Feldman is the representative for the Clinical Evaluators on the Executive Board of NEALS and Co-chair of the PT Committee with Peggy Allred, PT, DPT of Cedars-Sinai Hospital. Kathleen Hatala, RN, is the newest member and joined the Research Nurse Committee.

The first day began with the Executive Board Meeting. Click here to learn more about the Executive Board of NEALS.

The second day, Outcome Measures training, the Scientific Advisory Board meeting, and the committee and study meetings began; followed by the General Meeting the next day.  Dr. Heiman-Patterson and Dr. Glass opened the meeting and the attendees heard updates from the committees and NEALS trial updates. We heard from Dr. Nick Maragakis (Johns Hopkins) on the Resistance and Endurance Exercise Trial; Dr. Anne-Marie Wills (MGH) on using Electronic-health Application to Measure Outcomes Remotely; and from Dr. Robert Baloh (Cedars-Sinai) on the Human Neural Progenitor Cells Secreting Glial Cell Line-Derived Neurotrophic Factor trial.
 
The afternoon session included platform presentations chosen from the abstract submission. These included: Dr. Gary Pattee (Neurology Associates) Best Practices Protocol for the Evaluation of Bulbar Dysfunction in ALS: Summary Recommendations from the NEALS Bulbar Subcommittee Symposium; J. Raymond (National ALS Registry) Dissemination of Data by the National ALS Registry; Dr. Katherine Nicholson (MGH, NCRI) Gut Microbiome Assessment in People with ALS: An Interval Analysis; E. Beghi (IRCCS, Milan) Randomized double-blind placebo-controlled trial of acetyl-L- carnitine for ALS; Dr. Rick Bedlack (Duke) Final results from an open-label, single-center, hybrid-virtual 12- month trial of Lunasin for patients with ALS; Dr. Angela Genge (McGill) Masitinib as an add-on therapy to riluzole is safe and effective in the treatment of amyotrophic lateral sclerosis; Dr. Carlayne Jackson (UT Health, San Antonio) Clinical Trial Design, Interpretation, and Generalizability of Results: Lessons from the Edaravone Development Program
 
Friday’s session included the Science Symposium; the theme was Neuroinflammation: Basic and Clinical Approaches. The science update was given by Dr. Bob Brown (MGH), Dr. Jeff Rothstein (Hopkins) and Dr. Timothy Miller (WashU), the Scientific Advisory Board Leadership. Dr. Stanley Appel (Methodist Hospital) chaired the Science Symposium and spoke first on Suppressing Neuroinflammation: Cell Based Therapy of ALS; Dr. Nazem Atassi (MGH) spoke on Imaging Glial Activation as a Clinical Trial Outcome; and Dr. Shane Lidlow (Stanford) ended with What do Reactive Astrocytes Do?

With that, NEALS meeting closed and the Clinical Learning Institute began.
The CRLI is lead by Dr. Rick Bedlack (Duke) and the goal is to educate and empower people living with ALS to be “Research Ambassadors.” Dr. Heiman-Patterson (Temple) is one of the instructors.

The mission of NEALS is to “translate scientific advances into new treatments for people with ALS as rapidly as possible.” This open collaboration between both scientific and clinical researchers will certainly move us closer to that goal!