CRLI: One PALS Perspective

Written by Educator, CRLI Attendee, and PALS Todd Kelly

At the conclusion of the ALS Hope Foundation’s 2019 Clinical Research Learning Institute, the participants (patients, caregivers, and specialists) earned their certificates and bright pink lanyards as ALS Research Ambassadors. More importantly, we left the 2-day conference with new friendships, a deeper understanding of the disease and its particular complexities for research, and a renewed commitment to advocate for multiple issues that the ALS community faces.

    The conference on August 23-24 was free to participants at the Inn at Villanova, including the three meals as well as overnight accommodations if requested.  The seminar’s goal was to educate the participants and arm them with the tools to share this knowledge about clinical trials, current treatments, therapies, and drugs in the FDA “pipeline,” and methods for advocacy. We learned that one factor limiting research is low participation from PALS themselves (with an average of only 2 PALS per center per month). Another obstacle is that ALS, unlike most diseases, lacks clear biomarkers, necessary to prove/test a treatment’s success and efficacy. While the FDA does an excellent job in protecting the lives of patients, this means that the drug discovery process is incredibly expensive and often lasts 12 or more years.

    When some of the topics were scientifically complex and riddled with unfamiliar acronyms, the presenters did their utmost to use effective analogies, answer our questions and supported each other’s presentations with elaboration. The group carefully and critically read a published research paper and together uncovered serious flaws in its methodology and conclusions. We learned to distinguish between false hype and authentic hope. In the end, we shared ways in which we could individually and collectively pursue advocacy goals. And, of course, the opportunity to meet with other ALS patients and their caregivers was extremely valuable as we shared stories, frustrations, strategies, advice, and empathy.

Each presenter covered different topics reflecting their overlapping areas of expertise as practitioners, clinicians, researchers, biopharma representatives, organization advisors and directors, and advocates. All were highly knowledgeable, allowing them to respond to our questions as well as those of their peers. However, what fully united them was their compassion for the families of ALS patients and their passion for fighting this disease. The conference was inspiring, and I would encourage anyone impacted by this pernicious disease to participate in future offerings.

Report on RESNA 2019 #RehabWeek

The Rehabilitation Engineering and Assistive Technology Society of North America (RESNA) 's annual conference, #RehabWeek, was held in Toronto, Canada, June 24-27, 2019. Sara Feldman, PT, DPT, ATP, the Assistive Technology Professional at the MDA/ALS Center of Hope, attends the conference every year to keep up on the newest developments in assistive technology. The conference attendees include users, Rehab Engineers, PTs, OT, SLPs, researchers, suppliers, manufacturers, students, and other individuals working with assistive technology. Here Sara shares her experience: 

The RESNA Conference is a combination of keynote lectures, panel discussions, poster presentations, and workshops happening throughout the day. This year's conference, #RehabWeek, involved five other organizations concurrently holding their conferences:

 • the International Functional Electrical Stimulation Society (IFESS) 

• the International Conference on Rehabilitation Robotics (ICORR) 

• the International Industry Society in Advanced Rehabilitation Technology (IISART) 

• the American Congress of Rehabilitation Medicine (ACRM) 

• the International Society for Prosthetics and Orthotics (ISPO Canada)

This collaboration increases the numbers and diversity of both presenters and topics!

The Keynote Speakers:

The first speaker was computational neuroscientist, David Putrino, PT, Ph.D., (Mt Sinai HC, NYC). His lecture on "How to be an Innovator: Exploring rehabilitation and human performance in the 21stcentury" was excellent and showed us what is possible if you have the right mindset. For more on the work, he and his collaborators are doing see Putrino Lab and Not Impossible Labs. 

Deborah Backus, PT, Ph.D., is the director of MS research at the Shepherd Center (Atlanta, GA) and her topic, "Why Technology Innovation does not Equal Technology Adoption: Strategies for Successful Uptake," discussed opening the communication between the people in research and the people who use assistive technology. When deciding what AT to use, clinicians ranked "Evidence" as number one and users ranked "ease of use" as number one. She wants to bring these two closer together. When it comes to the process of idea to design to test to launch, only 2% of ideas ever make it to the intended users. Our role as clinicians is to help it to happen.

Mark Stephan, Board of Directors, Shirley Ryan Ability Lab, (Chicago, IL) spoke on "Recovery," and told his story of rehabilitation following a spinal cord injury. His story is inspirational and amazing and full of hard work and grit. He was the inspiration behind the Shirley Ryan Ability Lab, a place where "clinicians, scientists, innovators and technologists will work together in the same space, applying or "translating" research real-time."

Edward Lemaire, Ph.D., Ottowa Hospital Research Institute, presented on "Wearable and Wear-Nothing Approaches for Digital Transformation" which described using smartphone Apps to track patients' progress and transforming standard clinical spaces into "smart" spaces.

Katherine J. Kuchenbecker Ph.D. directs the Haptic Intelligence Department at the Max Planck Institute for Intelligent Systems in Stuttgart, Germany. Her lecture on "Haptic Interactions Matter" focused on the tactile interaction between people and the environment. Much of her work focuses on giving tactile feedback to surgeons using robotics, but her ideas also translate to other areas of robotics.

Geoff Fernie CM, Ph.D., PEng, CEng, FCAHS gave RESNA's Colin McLaurin Distinguished Lectureship Award Lecture. His presentation, "Prevention is an Important Topic for Rehabilitation Researchers" was an interesting and informative look at small changes aimed at prevention that can make a huge difference in a person's ability. One example was their research into the treads on people's winter boots that lead to Rate My Treads, a website that rates the slip resistance of footwear….preventing slip and falls!

Workshops:

There were multiple workshop-style presentations throughout the week, here are the highlights with a few links for you to check out! 

In "Adaptive and Therapeutic Approaches to Videogaming" Occupational Therapists M Calder (Stan Cassidy Centre for Rehabilitation) and E Muston-Firsch (Craig Hospital) presented on playing videogames, and how to make them more accessible. The first step is to look at what is already available in the software of the system, then the hardware, to look at adaptive controllers and 3D printing. We were all then given a chance to try the different set-ups and play the games with the adapted set-ups. Very cool!

 "Hands-free Mice: What's Currently Available and How to Make the "Right" Choice" was an excellent presentation by H Koester (Koester Performance Research). She has a blog post where she describes her experience at RESNA this year as well as shares her information. Highlights from the 2019 RESNA Conference.

"Unlocking Your Smartphone's Potential: Considerations and Application," was another excellent presentation by K Engstrom and S Sanderstrom (Craig Rehab) and was an across platform look at smartphone accessibility. We will be pulling this information together for our resource section soon, but here is a peek at Craig Rehab’s site. 

 The assistive technology that is available for people with ALS is ever-changing and evolving. The RESNA conference is an excellent place to learn about the newest technology and find out what is truly functional and what is hype. This year was no different!

Annual Research and Awards Luncheon

The ALS Hope Foundation kicks off May ALS Awareness Month with our annual Research Update and Awards Luncheon. This year’s speaker for the luncheon was Dr. Richard Bedlack from the Duke ALS Clinic speaking on his current research into ALS.

Click here to visit our YouTube page to see his video presentation. 

The second half of the luncheon program recognizes individuals who have provided support to the ALS Hope Foundation, The MDA ALS Center of Hope and to ALS Research. Areas of recognition are:

We were honored to have over 150 attendees to learn about advances and new areas of research being explored by Dr. Bedlack and to honor and recognize this year’s honorees. Thank you for your continued support and help in recognizing those who make a difference for the Foundation and in the lives of those living with ALS. For more information and to "meet" our awardees visit our website. 

3rd Annual Gala of Hope

3rd Annual Gala of Hope

Over 400 people joined us for the beautiful 3rd Annual Gala of Hope on Saturday, February 23 at Vie on North Broad Street in Philadelphia. Together, we raised over $58,000 to support the MDA/ALS Center of Hope, education and research initiatives. The evening was truly a success  and we are deeply grateful for the generosity of our guests and supporters. Dr. Robert Sinnott, the evening’s guest speaker, shared a very heartfelt message of hope and what it meant to him as a person battling this disease. Most importantly, Bob shared an encouraging message, “To love harder." 

We are appreciative to Hank Flynn from Fox 29, our Emcee, who not only was an excellent host, but who also put a personal note on the evening in memory of his father-in law. Thank you to all of our sponsors, many of whom have been on-going supporters of the ALS Hope Foundation. Thank you to the many who donated items to the Silent Auction as your generosity truly added to the evening festivities. And of course, a huge Thank You to the staff at Vie who admirably managed a room full of 400 guests with ease and professionalism. The food was delicious, the room was gorgeous, and every one felt welcome and taken care of.

The evening brought awareness to the ALS Hope Foundation and the work of the team at the MDA/ALS Center of Hope and recognized their 20 years of dedicated care for people with ALS.

View additional photos from the event on our Facebook page or via this link.
Watch bob Sinnott's speech and see the Team video below!

3rd Annual Gala of Hope

President’s Message from the Gala of Hope

Dr. Terry Heiman-Patterson

The 3rd Annual Gala of Hope marked the twentieth anniversary of the ALS Hope Foundation, which I co-founded with my friend and colleague Dr. Jeffrey Deitch, who passed away a few years ago. Dr. Deitch was a gifted scientist and humanitarian whose ideals and commitment will forever be part of the ALS Hope Foundation mission. 

I want to take this opportunity to acknowledge the challenges faced by people living with ALS and their families every day.  No one understands the urgency of our cause more clearly than PALS and their loved ones. The courage and grace with which PALS like our guest speaker at the Gala of Hope, Bob Sinnott, and their families face this disease is an inspiration to all of us at the ALS Hope Foundation and the MDA/ALS Center of Hope. Together, the ALS Hope Foundation, the MDA, and Temple Health, along with our team of clinicians and volunteers, are committed to making a difference to the ALS community. 
 

We are proud of our ALS Center which has have made tremendous progress over the last three years at Temple University. Our multidisciplinary team is focused on implementing state of the art care with hope, compassion, and honesty.  We are committed to the future, learning more about ALS, its causes, and drugs that may someday allow us to offer better treatment options. We are also dedicated to educating people about this disease - whether it is people living with ALS, healthcare providers, or the general public We want to accelerate research for the good of all people with ALS through our collaborative efforts within Philadelphia and across the United States. This progress is only possible through the joint efforts of the ALS Hope Foundation, Temple, the MDA and you!

Despite much progress, there is still work to be done. While we have two medications, Radicava and Riluzole, that can slow the progression of ALS, there is an urgent need to find real and tangible treatment while taking care of people living with ALS now. For this reason, the mission of the ALS Hope Foundation includes care, research, and education. Thank you for joining us in this important mission. Please enjoy your evening, and know that your participation in our organization is vital to keep hope on the horizon.

Gala of Hope for ALS - New Venue and Date

We are thrilled to share this exciting news with you regarding our 3rd Annual Gala of Hope, affiliated with MDA/ALS Center of Hope at Temple University.  We sold over 230 tickets in one month!
 
After careful thought, we have decided to move the event to a larger venue to better accommodate our guests. This means we also have to change the date.
 
Please now join us on Saturday, February 23, 2019 at 7pm at Vie 600 N Broad Street in Philadelphia!

All tickets previously purchased will be accepted and no further action need be taken. If you are unfortunately unable to attend, please know that you will be missed.  A response to this email will enable you to receive a full refund. You can also contact Mara at mara@alshopefoundation.org or 215-568-2426 with any questions or concerns. 
 
Thank you for your continued support of the ALS Hope Foundation community. Your donations and assistance make HOPE possible!
 
Looking forward to seeing you on February 23, 2019 at Vie!

If you would like to purchase tickets or learn more about our sponsorship and advertising opportunities, visit this page.

29th International Symposium on ALS/MND

Glasgow, Scotland, UK was the setting for the 29th International Symposium on ALS/MND this December, 2018.  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. This event attracted over 1300 attendees, including scientists, clinicians, association members and PALS/CALS, from around the world. Terry Heiman-Patterson, MD, Justin Kwan, MD, Donna Harris, MA, CCC, and Sara Feldman, DPT, ATP, spent the week attending the many scientific and clinical sessions and meetings.
 
Each day, the ALS Hope Foundation went on Facebook Live to update our followers on the day’s events and presentations. See our Facebook page https://www.facebook.com/ALSHopeFoundation for the videos!
 
Steve Bell (MNDA), Chairman of the International Alliance of ALS/MND Associations opened the week of meetings December 4, 2018 with the 26th Annual Alliance Meeting. The Alliance brings together ALS/MND organizations from around the globe. The ALS Hope Foundation has been a member of this international group since 2001 and Dr. Sara Feldman is on Board of Directors for the Alliance.

The Ask the Experts event is held the second day of the meetings. This year’s panel included Dr. Brian Dickie (MNDA), Professor Dame Pamela Shaw (Sheffield), Professor Orla Hardiman (Ireland) and Dr. Bhuvaneish Selvaraj and Dr. Arpan Mehta (Euan MacDonald Centre). The event was live streamed on social media and the full video and power point slides are available via this link. 
 
The Allied Professionals Forum was held on December 6, 2018. This is 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 Rachel Boothman (MNDA). The presentations will be posted to the Alliance website early in 2019. We are pleased to announce that Dr. Feldman received the inaugural Allied Health Professionals Award!
 
The 29th International Symposium on ALS/MND then took place on December 7-9, 2018. Sally Light (MNDA) opened the Symposium and Craig Scott from MND Scotland, this year’s hosts, welcomed everyone in attendance.  It was three full days of presentations and posters. Please see the full program. Dr. Heiman-Patterson was on the judging panel for this year’s clinical poster prize. Dr. Heiman-Patterson and Dr. Kwan also presented a poster, “Effect of Radicava (Edaravone) on uric acid levels: Preliminary results.” Sara Feldman and Donna Harris presented a poster on “Modifying Cervical Support to Allow Rotation with a 3-D Printed Attachment.” Carlayne Jackson (UTHSC) gave a platform presentation on “Measuring rate of decline in pulmonary function in ALS: Results from the ALS nutrition/NIPPV study group” with Dr. Heiman-Patterson and Dr. Ossama Khazaal as co-authors.
 
The International Symposium on ALS/MND is the largest medical and scientific conference specific to ALS/MND in the world and brings together everyone, leading researchers, clinicians, PALS/CALS, and associations, who dream and believe that one day there will be a world without ALS/MND. We all leave invigorated with a renewed sense of purpose, inspired with new ideas, and driven with that ever present urgency. For we know that for those living with ALS/MND, time is all too precious and short.

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.