October 3, 2017
Introduction
There
are currently many forms of ALS research. These include drug trials,
tests of new technology, genetics, stem cells, and more. Every
researcher has the same goals of improving quality of life for people
affected by ALS and finding a way to mitigate the symptoms of ALS while
moving closer to a cure.
Each
research program comes with many challenges. For some, the travel to a
research site is too difficult to do on a regular basis. Other
considerations include costs, side effects, the use of placebo controls,
and strict eligibility requirements. In keeping with this, not everyone who receives this e-mail will be eligible for the following study, but we are excited about it, and wish to make you aware so you can contact us if it is of interest to you.
Research Study
The
team at Penn State Hershey Medical Center, in collaboration with
Harvard University, wishes to invite you to join an ongoing research
study about an online mindfulness learning program.
Recent
advances in clinical treatments aimed at improving the health of people
with chronic disorders are based on the concept of mindfulness. Mindfulness
can be defined as a flexible state of mind resulting from the simple
act of actively noticing new things, as opposed to mindlessness, the
human tendency to operate on" autopilot".
If
you choose to participate in this study, 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. We may also gather
information from your medical record. Each participant will receive $50
at the end of the study.
ALS
families know that the disease often has psychological impacts on both
patients and caregivers which can affect their quality of life. Research
funded by the NIH has shown that an ALS-specific meditation program is
beneficial to quality of life and psychological well-being of people
with ALS. Follow this link to read more.
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.
Thank you,
Zachary Simmons, MD
Professor of Neurology and Humanities
Director, Neuromuscular Program & ALS Center
Penn State MS Hershey Medical Center
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.
his
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
October 3, 2017
Introduction
There
are currently many forms of ALS research. These include drug trials,
tests of new technology, genetics, stem cells, and more. Every
researcher has the same goals of improving quality of life for people
affected by ALS and finding a way to mitigate the symptoms of ALS while
moving closer to a cure.
Each
research program comes with many challenges. For some, the travel to a
research site is too difficult to do on a regular basis. Other
considerations include costs, side effects, the use of placebo controls,
and strict eligibility requirements. In keeping with this, not everyone who receives this e-mail will be eligible for the following study, but we are excited about it, and wish to make you aware so you can contact us if it is of interest to you.
Research Study
The
team at Penn State Hershey Medical Center, in collaboration with
Harvard University, wishes to invite you to join an ongoing research
study about an online mindfulness learning program.
Recent
advances in clinical treatments aimed at improving the health of people
with chronic disorders are based on the concept of mindfulness. Mindfulness
can be defined as a flexible state of mind resulting from the simple
act of actively noticing new things, as opposed to mindlessness, the
human tendency to operate on" autopilot".
If
you choose to participate in this study, 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. We may also gather
information from your medical record. Each participant will receive $50
at the end of the study.
ALS
families know that the disease often has psychological impacts on both
patients and caregivers which can affect their quality of life. Research
funded by the NIH has shown that an ALS-specific meditation program is
beneficial to quality of life and psychological well-being of people
with ALS. Follow this link to read more.
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.
Thank you,
Zachary Simmons, MD
Professor of Neurology and Humanities
Director, Neuromuscular Program & ALS Center
Penn State MS Hershey Medical Center
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.
his
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