This month, we recognized the 20 year partnership between The ALS Association and Penn State Hershey Medical Center to support ALS care and research. I am humbled and honored to have been part of this collaboration from the start and I am grateful to Sue Walsh and the entire team here at the clinic for dedicating their time, their skills, and their hearts to this worthy cause. Our work is not done and, as you’ve seen in the emails this year, we continue to invest in important research.

We invite you to consider participating in an ongoing research study.  The Penn State Hershey Medical Center is a participating site in a multicenter research study to look at new methods of measuring muscle strength, breathing, motor neuron function, and a variety of other “biomarkers” in individuals with ALS over time to see if these new approaches are better at detecting changes than the currently used methods. The methods that are found to be the most valuable in this study will be considered for use in future ALS clinical studies.

The study will involve multiple visits to our center outside of your usual ALS clinic visits, and will include exams, blood and urine tests, breathing tests, muscle strength tests, electrical tests of nerves and muscles, and questionnaires.  The study will last for approximately 2 years.  Your care will not be affected should you decline to enroll in this study.

Eligible participants should:

• Have breathing capacities of 50% or greater

Eligible participants should NOT:

• Have a diaphragm pacing system
• Be HIV positive or have a history of Hepatitis B or Hepatitis C

Some other criteria also apply. 

Please contact Jen Crossen, our study coordinator, if you are interested and would like further information at 717-531-0003, ext. 280842 or at jcrossen@hmc.psu.edu. 

Sincerely,  

Zachary Simmons, MD
Professor of Neurology and Humanities
Director, ALS Center
Penn State Milton S. Hershey Medical Center

 

The ALS research team at Penn State Hershey Medical Center is dedicated to exploring all avenues of discovery to help find answers to ALS that lead to new treatments and hope for families affected by this disease. With the help of participating patient families, donations through the Walk to Defeat ALS, grants through The ALS Association, and funding through various agencies, our professionals are able to conduct at a wide range of studies in order to understand the mechanisms underlying ALS, and how we can harness that knowledge to improve treatments and care. 

Part of the research mission of the ALS Clinic at the Hershey Medical Center is the study of brain-computer interface (BCI) technology that could allow people to operate computers using just the electrical signals from their brains. These devices, which record brain activity with the help of an electrode  cap, could be very useful for restoring communication.  The system requires some training to learn how to setup and use, and we understand that frequent travel to a research site can be difficult.

Therefore, we invite you to consider participating in a research study assessing the home use of a BCI. This study will enroll patients who have difficulty with speaking or writing, due to limitations of speech or upper limb function, or both. Those who currently use a device for assistive communication, such as an eye tracking system, are especially  encouraged to participate.

This study will enroll patients and their caregivers in a two-month protocol to evaluate the effectiveness of remote, in-home training with this system.   During this time, a member of the research team will deliver the BCI equipment to your home and show you how to operate the system. Over the next two months, we will engage in weekly videoconferences with you to teach you how to independently use the  communication system. At the end of the study, you will interact with a clinical nurse at the Hershey Medical Center and give your assessment of the system.

Although we are sending this information to a large number of people with ALS and their caregivers, it is important that you be aware that  research is a two-way street that requires collaboration and cooperation from you and from us:  You must be interested in participating and we must make certain that you meet very strict rules (“inclusion criteria” and “exclusion criteria” approved by our Institutional Research Board) that will determine whether or not you are eligible to participate.  If you wish to  learn more about this study, or other ALS research programs at Penn State Hershey Medical Center, please contact Research Manager Anne Morris at amorris2@hmc.psu.edu or 717-531-0003, ext 289123, and make sure to forward these emails to anyone in your network that may be interested. Visit www.alsphiladelphia.org to learn more about ALS, services that may be available for your family, and ways that you can get involved in fundraising and awareness.

Thank you,

Zachary Simmons, MD
Professor of Neurology and Humanities
Director, ALS Center

We invite you to consider participating in an ongoing research study.  The Penn State Hershey Medical Center is a participating site in a multicenter clinical trial investigating the medication tocilizumab.  We are conducting this research study to find out if tocilizumab is safe and if it will have an effect in people diagnosed with Amyotrophic Lateral Sclerosis (ALS). 

Tocilizumab has been approved by The Food and Drug Administration (FDA) for the treatment of moderate to severe rheumatoid arthritis (RA), a disease of the human immune system.  Tocilizumab is a humanized monoclonal antibody, which may help to treat other diseases of the human immune system, including ALS.  The FDA has not approved tocilizumab to treat ALS.    
 
This research study will compare the use of tocilizumab to placebo.  The placebo will look exactly like tocilizumab, but will not contain tocilizumab.
 
The study will involve multiple visits to our center outside of your usual ALS clinic visits, and will include exams, blood tests, breathing tests, lumbar punctures, and questionnaires.  The study will last for approximately 19 weeks.  Your care will not be affected should you decide not to enroll in this study.
 
Eligible participants should have ALS symptoms for 36 months or less, breathing capacities of 60% or greater, and should have no other known immune compromising illness, among other criteria.
 
Contact Travis Haines, our study coordinator, if you are interested and would like further information at 717-531-0003, Ext. 287666 or thaines@hmc.psu.edu.

Thank you,

Zachary Simmons, MD
Professor of Neurology and Humanities
Director, ALS Center

Last December, I started to provide you with monthly updates about ongoing ALS research projects at Penn State Hershey Medical Center. However, the professionals at Hershey Medical Center have been leading ALS research initiatives for years. In fact, 2016 will mark the 20th year that we have been an ALS Association Clinic and everyone at our program is proud to do all that we can, both from a research and patient care perspective, to tackle this disease from all fronts.

Last year, The ALS Association and Columbia University Medical Center announced a collaboration to understand the differences and commonalities in how genes influence ALS with a goal of finding a basis for developing individually tailored therapies through precision medicine. This massive project is called the “Genomic Translation for ALS Care” (GTAC) and will involve genetic sequencing and phenotyping from 1,500 people with ALS from across the country.

“We want to bring genomics right to the point of care in ALS where instead of focusing on retrospective DNA samples with limited clinical information, we focus on patients who are under active clinical management,” said ALS Association Chief Scientist Lucie Bruijn, Ph.D., M.B.A in a press release from 2015 announcing the GTAC study. “By focusing on patients seen by participating ALS clinics, this project will allow investigators to ask how different genetic causes of ALS translate into different clinical consequences.”

Recently, as a result of funding from the famous Ice Bucket Challenge, researchers discovered a new ALS gene, NEK1, which will help to get us another step closer to knowing the differences in people with ALS and hopefully developing effective treatments. Click here to read the story from The ALS Association about this breakthrough.

The NEK1 gene discovery is an important next step in learning about the influence of genes in ALS progression and in creating personalized therapies. Penn State Hershey Medical Center is joining with institutions from across the country for the GTAC study to continue the progress made through the recent gene discovery. What I am most excited about is that GTAC is a major step forward in fostering collaboration among large ALS research centers, with the common goal of understanding the genetic causes of ALS and how to create therapies that work. We are proud and excited to be a part of this endeavor.

In the coming months, we will inform you of how you can participate in this study through Penn State Hershey Medical Center and give you updates on progress. Eventually, treatments for ALS could be determined by a person’s own genetics, as is already occurring for some diseases.  It is my hope that the GTAC study will contribute toward making such “precision medicine” a reality for ALS.

I hope that you will be interested in this study and that you will want to learn more about other ALS research programs at Penn State Hershey Medical Center. If you have questions or comments, please contact Research Manager Anne Morris at amorris2@hmc.psu.edu or 717-531-0003, ext 289123, and make sure to forward these emails to anyone in your network that may be interested. Visit www.alsphiladelphia.org to learn more about ALS, services that may be available for your family, and ways that you can get involved in fundraising and awareness.

Thank you,

Zachary Simmons, MD
Professor of Neurology and Humanities
Director, ALS Center

As we move into late July and August, the summer heat is a good reminder of the value of our ongoing research projects at Penn State Milton S. Hershey Medical Center. This month, we would like to highlight our ongoing work in telemedicine.

Many research projects at Hershey Medical Center are focused on the causes and potential treatments for ALS, and those studies are very important. It is also extremely important for us to research the best ways to deliver care and make sure that people with ALS and their caregivers have the resources and knowledge they need to navigate life with this disease.

For this project, we are recruiting people who have ALS and people who provide care at home for someone with ALS. This research is being done to find out if video conferences from a health care provider to an ALS patient and their caregiver in their home can be an effective method of health care delivery. These are called telemedicine visits. Up to 50 ALS patients and their caregivers will take part in this study at Hershey Medical Center. We are currently able to offer this service only to patients already attending Penn State Hershey Medical Center ALS clinic. If it proves successful, we hope to expand that in the future, although no such plans have yet been made.

There are many reasons why telemedicine may prove to be a useful resource for those living with ALS. Our research has shown that the biggest advantages perceived by our patients for ALS clinic over a standard visit to a doctor’s office is the presence of high levels of expertise among the clinicians and the ability to have an evaluation by multiple clinicians during a single appointment. However, the disadvantages cited most frequently are the long, exhausting days, including travel time and time in clinic. There are other challenges to coming to clinic: Weather conditions, such as heat in the summer or snow in the winter, may make it hard to travel to the clinic. Your primary caregiver’s work schedule may pose challenges for scheduling. It may just be difficult to leave the house for an extended period of time. This project will help evaluate whether telemedicine is a positive addition to our caregiving tools.

Should you choose to become involved, you will have 1 to 4 telemedicine visits during the study using video conferencing software over the Internet. Your telemedicine visit will not be recorded or videotaped. After each telemedicine visit, you will be asked to complete a short post-visit survey online, which are confidential. The results of this research may lead to more routine uses of telemedicine in the future.

I hope that you will find this study and our other ALS research programs at Penn State Hershey Medical Center interesting and useful. Please contact Research Manager Anne Morris at amorris2@hmc.psu.edu or 717-531-0003, ext 289123, to find out how to participate. Visit www.alsphiladelphia.org to learn more about ALS, services that may be available for your family, and ways that you can get involved in fundraising and awareness.

Thank you,

Zachary Simmons, MD
Professor of Neurology and Humanities
Director, Neuromuscular Program & ALS Center

The summer has officially begun, but we at Penn State Milton S. Hershey Medical Center know that there is no vacation from ALS for our patients and their families. With that in mind, our team at Hershey Medical Center is working harder than ever to advance our current research projects and develop new studies.

Our research includes investigations of possible causes of ALS as well as treatments that we hope will result in a cure.  However, much of our time and energy is focused on ensuring that we are providing the best possible care for our ALS patients and families who are living with the disease now. Many patients think of research in terms of scientific laboratory experiments or clinical drug trials, but our work at Hershey Medical Center extends past that and includes the development of new practices for clinical care.  In fact, we are constantly asking ourselves how we can improve the care that we provide. Our team identifies a clinical concern and reviews all of the relevant literature in order to devise an approach that results in the best possible practice. You and all of our patients and families are an integral part of this research process. We often ask for the input of patients and families as we work to find an effective way to address our clinical concerns. 

Once a project is developed and piloted with patients and families, we include them again in the evaluation process. We want to tailor our clinical program to the unique needs of our ALS patients. After we collect feedback and determine the usefulness of a clinical intervention, we incorporate it into our standard of care in our clinic.

Some of our clinical care research projects include:

• Assessing quality of life in ALS
• Caregiver assessment and support
• Improving end-of-life care
• Caring for patients with cognitive changes and their families 

We encourage feedback and are always looking for new ways to improve. Please feel free to reach out to me or any member of our team with any concerns, questions, or comments.

I hope that you will continue to participate in our ALS research programs at Penn State Hershey Medical Center. Please contact Research Manager Anne Morris at amorris2@hmc.psu.edu or 717-531-0003, ext 289123, to find out how to participate.  Visit www.alsphiladelphia.org to learn more about ALS, services that may be available for your family, and ways that you can get involved in fundraising and awareness.

Thank you,


Zachary Simmons, MD
Professor of Neurology and Humanities
Director, Neuromuscular Program & ALS Center
Penn State MS Hershey Medical Center 

 

Over the past few months, I have updated you on the progress we are making in the quest to better treat and ultimately find a cure for ALS. Your donations and advocacy have allowed us at Hershey Medical Center to attack ALS from many angles and have also given us new opportunities to collaborate with researchers throughout our region and even throughout the world. From our past emails, I know that many of you want to know more ways that you can get involved now.

With that in mind, I would like to invite you to join a research study about an online mindfulness learning program. This study is a collaboration between Harvard University and the Penn State Hershey Medical Center.

Both people with ALS and their caregivers are eligible to join. The online mindfulness program will take 5-20 minutes of your time every day for 5 weeks. You can access the mindfulness program’s website from your computer or mobile device.

If you choose to participate, you will be randomly assigned to one of two groups – one group will begin the online mindfulness program right away. The other group will be placed on a waiting list for 6 months before they can begin the program.

Both groups will complete online questionnaires at the beginning of the study and again at 5 weeks, 3 months, and 6 months. These questionnaires will take about 20 minutes each to complete. If you have ALS, we may also gather information from your medical record. Each participant will receive $50 at the end of the study.

Eligible participants should have a forced vital capacity (FVC) of at least 50% of predicted. If you are interested in participating or learning more, please contact Anne Morris at the Penn State Hershey Medical Center at amorris2@hmc.psu.edu or 717-531-0003, ext. 289123.

Before I end this email, I want to give an exciting update from our past communications. In late 2015, we announced a special collaboration between Hershey Medical Center and The ALS Association to bring more people into our research programs. As a result, many people who normally would not have known about our initiatives are now able to participate in these programs, making it easier for us to collect data and make significant progress.
  

This is an image of Sarah, who is a person with ALS from Montgomery County, PA. She does not go to our Treatment Center at Hershey Medical Center, but, because of this collaboration, connected with Dr. Andrew Geronimo to participate in his work on Brain Computer Interface. Here is what she had to say about being part of the study: “If you're sad about Prince, hopefully this will make you smile! 19 electrodes reading my brainwaves. Spelling words just by looking at a computer screen. So cool!”

All of us at Hershey Medical Center and The ALS Association are hopeful about the direction of our research, from mindfulness to genetics to Brain Computer Interface and everything in between. Thank you to everybody who has helped.

You can continue to make a difference. Join us at the Hershey Walk to Defeat ALS this June by registering at www.hersheywalktodefeatals.org or learn more at www.alsphiladelphia.org and make sure to email your questions about our research to amorris2@hmc.psu.edu.


Thank you,

Zachary Simmons, MD
Professor of Neurology and Humanities
Director, Neuromuscular Program & ALS Center
Penn State MS Hershey Medical Center

 

 

 
I hope that you have found our recent research updates from Penn State Hershey Medical Center helpful and informative. We want you to be fully aware of the multitude of studies that are ongoing and of how you can participate. Together, we are making serious strides in the fight against ALS. Here is another research opportunity for those with ALS affecting speech and/or swallowing (bulbar ALS).

We would like to invite you to consider participating in an upcoming research study about tongue movement in speech production. The goal is to identify key tongue movements that can help a listener’s understanding of speech produced by adults with motor speech disorders secondary to ALS. With the findings from the study, we may be able to provide services to people with ALS so they can produce clearer speech in the future.

The study will involve one visit to the Penn State Hershey ALS clinic and will include a hearing screening, questionnaires, and speech production with attached sensors. To trace the tongue movement, sensors will be attached on the lower lip, jaw, tongue, and forehead with biocompatible tape and glue. You will wear a headset microphone and be asked to produce multiple single words and sentences. Your height and weight will be measured at the end of the session. Your care will not be affected should you decide not to enroll in this study.

Eligible participants must carry a diagnosis of dysarthria (speech problem) and ALS. Eligible participants must also have good hearing, be native speakers of American English, be able to produce single words in imitation, and be between 18 and 90 years. Participants will be compensated $50 upon research participation completion.

If you might be interested in participating in the research, please contact Dr. Jimin Lee (814-863-5338; JXL91@psu.edu). 

This is one of the many studies going on now at Penn State Hershey Medical Center. Other projects include genetics research, telemedicine, brain-computer interface, mindfulness, and more. If you have questions about these projects and want to learn more, please email Anne Morris at amorris@hmc.psu.edu  or contact her by telephone at 717-531-0003, ext 289123.

Your support for ALS research is needed all year round. Please join me at the Hershey Walk to Defeat ALS® on Saturday, June 4. Register your team at www.hersheywalktodefeatals.org and I encourage you to look into participating in the National ALS Association Advocacy Day in Washington, DC from May 8-10 by registering at www.alsa.org/advocacy/ or by emailing Tony@alsphiladelphia.org for details. 

Our team at Penn State Milton S. Hershey Medical Center is excited about the many avenues of ALS research on the immediate horizon. Some of the projects now being considered are things that seemed like science fiction not that long ago. Yet, because of the support of many donors, volunteers, and persons with ALS and their families who are participating in research, we are rapidly advancing our knowledge and abilities.

One area of research that is particularly encouraging is brain computer interface, or BCI. We are fortunate to have as part of our ALS research team my colleague, Dr. Andrew Geronimo, a graduate of the Penn State Center for Neural Engineering in University Park. As a graduate student and more recently as a member of our ALS research team at Penn State Hershey, he has worked alongside many ALS patients to explore the possibilities of this technology. I am convinced that BCI is a “game changer” that has the potential to provide a new way for people with ALS to communicate and interact with the world after the disease takes their ability to speak or move. I firmly believe that BCI will one day be as common place as eye-gaze systems and other “high-tech” devices that have the potential to greatly improve quality of life for those living with ALS.

“Overall, the availability of enhanced communication tools may even change end-of-life directives for ALS patients, making life-extending interventions, such as mechanical ventilation, more desirable.” –www.pennstatehersheyneuroreport.org

Brain Computer Interface currently works by recording brain signals through an electroencephalography (EEG) cap, which would be worn by an ALS patient. The cap is then hooked up to a computer and Dr. Geronimo records the responses of those brain signals on the screen. It is not reading your thoughts, but it does provide a tool for a computer to  interpret simple commands or, in the future, complex ideas.  It may be able to tell if a subject wants to move their left or right hand or wants to communicate ‘yes’ or ‘no’.

In the future, Dr. Geronimo hopes that BCI will allow a person with ALS who is paralyzed to use a computer mouse or to control a motorized wheelchair. It is no longer a question of “what can this technology do?” Rather, the question is “how do we get there and when?”

The answers to those questions depend on the number of people participating in BCI studies. This is one major reason why we are working with The ALS Association Greater Philadelphia Chapter to maximize participation in this research. This month, The ALS Association awarded The Pennsylvania State University College of Medicine a grant of $197,551 for two years of study on Brain Computer Interface. Through our relationship with The Greater Philadelphia Chapter, we are reaching out to persons with ALS throughout the Chapter region to find individuals interested in participating in this study. Your involvement could help us advance this technology and get it even closer to a mainstream tool for those with ALS patients.

To learn more about this and about how to get involved, please email research Project Manager Anne Morris, MPH at amorris2@hmc.psu.edu or call 717-531-0003 ext. 289123 and don’t forget to listen to Dr. Geronimo on the Chapter Podcast at http://alsphiladelphia.podbean.com/e/episode-38-with-debbie-ihde-andrew-geronimo-and-donna-cleary/ 

Please look out for more information on our ongoing trials and research at Hershey Medical Center in future emails as we work to educate the entire ALS population about this important work and about how you can get involved. 
Don’t forget to join me at the Hershey Walk to Defeat ALS® on Saturday, June 4. Register your team at www.hersheywalktodefeatals.org 

Thank you,

Zachary Simmons, MD
Professor of Neurology and Humanities
Director, Neuromuscular Program & ALS Center
Penn State MS Hershey Medical Center


UPDATE ***

Last month, I informed you of some exciting developments in ALS research here at Penn State Hershey Medical Center, and the potential for collaboration with other ALS centers in our region. Our goal is the same as it has ever been – to improve the quality of life of those living with ALS, and eventually to end ALS for good.  Our strategy for 2016 is to bring together all of those who share these goals, so that we can use our combined power to get closer to these goals.  You have made it clear to us that people with ALS and their families WANT to know more about research opportunities in which they can participate.  This is wonderful, because studies require a variety of subjects in order to produce accurate and usable data.


The way to enhance collaboration between researchers and people with ALS is to inform you of the ALS research opportunities and progress here in our area.  Our goal is to communicate with you on a regular basis with news of our research efforts, including educational videos and podcasts.  In turn, we hope you will be encouraged to participate in these important research initiatives.


Here at Penn State Hershey Medical Center, we have a number of clinical studies getting underway or coming soon. In addition to the more conventional drug studies, our other initiatives center around  brain-computer interfaces, the impact of mindfulness, and speech dysfunction. There are also plans for a large genetics study and another centered on biomarker development in the future. These studies provide people with ALS multiple opportunities to participate.


Thank you to the other ALS centers who have already begun to help us and to all of you who have reached out after my first email to ask how you can get involved. There are an unprecedented amount of funded studies ongoing right now because of your financial support and advocacy.


Please email our Research Manager, Anne Morris (amorris2@hmc.psu.edu ) with your questions or to find more ways to participate. In the meantime, you can learn more about one of our studies, focused on Brain-Computer Interface, by clicking here to listen to a podcast interview with Dr. Andrew Geronimo, an engineer who is collaborating with us on this initiative. I hope you find it informative.


Thank you,


Zachary Simmons, MD
Professor of Neurology and Humanities
Director, Neuromuscular Program & ALS Center
Penn State MS Hershey Medical Center



Right now, there is more action on ALS research than ever before. Across the country and even around the world, scientists from many disciplines are working on new ways to improve the lives of people with ALS and get us closer to a cure. Not only are researchers working on hundreds of proposals at this moment, but scientists and physicians in the ALS community are collaborating at a higher level than I’ve ever seen in all of my years working on this important cause.

We are proud to be part of this collaboration with a variety of big projects right here at Penn State Hershey Medical Center. Right now, we are participating in drug therapies, and our researchers are developing studies on genetics, mindfulness, and new technologies like Brain Computer Interface for people with ALS. Our goal is to improve the lives of people with ALS and end the disease once and for all. This is a goal that we share with ALS families, The ALS Association, and all neurologists and healthcare professionals in the field.

One sure way to accelerate the race toward this goal is to engage more individuals with ALS in research studies. Our surveys show that most people with ALS are strongly interested in research, but are not currently participating in any research studies! We would like to change that, which is why, starting in early 2016, we will be working to expand research participation by persons with ALS served by The ALS Association Greater Philadelphia Chapter. Through our partnership with the Chapter, I have been in contact with my colleagues at other ALS treatment centers in our region to design ways to inform all of our patients about every opportunity for research participation. Sometimes our projects require people with ALS to be in our clinic. Sometimes our projects can take place remotely. By expanding our reach beyond our clinic borders, we hope to speed the pace of research and get us closer to accomplishing our goals.

There is a great deal of enthusiasm to work together toward our common mission on behalf of all ALS families. Today is step one, but our plan is to communicate with you regularly throughout 2016 and beyond to educate our families and friends about ongoing projects, the state of research at the clinics, and how you can get further involved. 

I look forward to working with you to defeat ALS. 

Happy Holidays,

Zachary Simmons, MD
Professor of Neurology and Humanities
Director, Neuromuscular Program & ALS Center
Penn State MS Hershey Medical Center


 

The ALS Association Greater Philadelphia Chapter
321 Norristown Road - Suite 260, Ambler, PA 19002
215-643-5434

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