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 Sinnottthe 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

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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 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 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.

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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.

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! 

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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