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!

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.