Senior Director, Patient Management, Care and Rehabilitation Research, National MS Society

Kathy Zackowski, PhD, OTR

“The idea is really to encourage clinicians as well as researchers to have a better awareness of some of the issues that are at stake for people with progressive MS... the more we can stay aware by reading and talking with one another, the better.”

The National Multiple Sclerosis Society, along with other multiple sclerosis (MS) organizations from across the world that make up the International Progressive MS Alliance, has called for action in the field of progressive MS to prioritize certain areas of research in a recent paper. The paper identified important issues in progressive MS that need more research and funding.

The authors, including first Kathy Zackowski, PhD, OTR, senior director of patient management, care, and rehabilitation research, National Multiple Sclerosis Society, isolated 4 key areas that they believe need to be targeted in progressive MS research: fatigue, pain, mobility and upper extremity impairment, and cognitive impairment. They stressed the importance of investigating these areas to push management in progressive MS forward, in addition to the work done in these areas for relapsing MS, which is where most research is currently focused.

 spoke with Zackowski to learn more about further research she would like to see conducted in progressive MS. She encouraged people to read the paper published in the 

 and to spread word of the need for research in progressive MS.

Zackowski KM, Freeman J, Brichetto G, et al. Prioritizing progressive MS rehabilitation research: A call from the International Progressive MS Alliance. 

Published online March 15, 2021. doi: 10.1177/1352458521999970

Videos

The senior director of patient management, care, and rehabilitation research at the National Multiple Sclerosis Society encouraged clinicians to spread word of the need for research. 

A Call to Action for Progressive MS Research: Kathy Zackowski, PhD, OTR

“Because of COVID, our donor events have been really limited because we can't do them in person. Our research is funded by people who donate to the National MS Society. So, I want to encourage people to participate in these National MS Society donor events - there are walks, bike rides, even virtual events, just to try to keep research moving forward. It's really important that people are aware that those events are how we continue moving research forward.”

The National Multiple Sclerosis Society, along with other multiple sclerosis (MS) organizations from across the world that make up the International Progressive MS Alliance, has published a paper calling for action in the field of progressive MS to prioritize certain areas of research. The alliance aims to identify and bring to attention important issues in progressive MS that need more research and funding.

First author Kathy Zackowski, PhD, OTR, senior director of patient management, care, and rehabilitation research, National Multiple Sclerosis Society, and colleagues isolated 4 key areas that they believe need to be targeted in progressive MS research: fatigue, pain, mobility and upper extremity impairment, and cognitive impairment. They stressed the importance of investigating these areas in progressive MS in addition to relapsing MS, which is where most research is currently focused.

 spoke with Zackowski to learn more about ongoing research in progressive MS as well as further research she would like to see conducted. She encouraged people to participate in donor events as the funds raised are what help drive these research efforts.

 Published online March 15, 2021. doi: 10.1177/1352458521999970

The senior director of patient management, care, and rehabilitation research at the National Multiple Sclerosis Society discussed the importance of fundraising events to further MS research. 

Funding Research in Progressive MS: Kathy Zackowski, PhD, OTR

“We really are getting closer to finding treatments for progressive MS that are as effective as those for relapsing MS. Our big push is really to say that we're looking for the cure. And that has been the case from the beginning, but now we're saying it out loud, that we want to look for a cure, but what a cure means to each person is different."

The International Progressive MS Alliance, made up of multiple sclerosis (MS) organizations from across the world including the National MS Society, has published a paper calling for action in the field of progressive MS to prioritize certain areas of research. The alliance aims to identify and bring to attention important issues in progressive MS that need more research and funding.

Kathy Zackowski, PhD, OTR, senior director of patient management, care, and rehabilitation research, National MS Society, served as first author of the paper. Zackowski and colleagues isolated 4 key areas that they believe need to be targeted in progressive MS research: fatigue, pain, mobility and upper extremity impairment, and cognitive impairment. They stressed the fact that research within these MS characteristics is mostly done in relapsing MS as opposed to progressive MS.

 spoke with Zackowski to learn more about the unmet needs in progressive MS care and rehabilitation. She discussed the importance of newly diagnosed patients getting a baseline physical therapy evaluation and also stressed the National MS Society’s goal of ultimately finding a cure for MS.

Zackowski KM, Freeman J, Brichetto G, et al. Prioritizing progressive MS rehabilitation research: A call from the International Progressive MS Alliance. Mult Scler J. Published online March 15, 2021. doi: 10.1177/1352458521999970

The senior director of patient management, care, and rehabilitation research at the National MS Society discussed the organization’s ultimate goal of curing MS. 

Finding a Cure for Multiple Sclerosis: Kathy Zackowski, PhD, OTR

“The cumulation of symptoms [in progressive MS] really becomes a problem and makes rehabilitation difficult, because it's hard to know how to address these issues that have been getting worse over time. I would really recommend to people at the very beginning, even when you're initially diagnosed, to get an evaluation from a physical therapist or occupational therapist to get a baseline of where you're at.”

A recent paper has called for action in the field of progressive multiple sclerosis (MS) to prioritize certain areas of research. The paper was published by the International Progressive MS Alliance, made up of MS organizations across the world. The alliance aims to identify and bring to attention important issues in progressive MS that need more research and funding.

One such organization in the alliance is the National MS Society, and Kathy Zackowski, PhD, OTR, its senior director of patient management, care, and rehabilitation research, served as first author of the paper. Zackowski and colleagues isolated 4 symptoms that they believe need to be targeted in progressive MS research: fatigue, pain, mobility and upper extremity impairment, and cognitive impairment. They stressed the fact that research in these symptoms is mostly done in relapsing MS as opposed to progressive MS.

 spoke with Zackowski to learn more about the challenges in progressive MS rehabilitation. She stressed that newly diagnosed patients should get an evaluation from a physical or occupational therapist to establish a baseline in their disease course.

The senior director of patient management, care, and rehabilitation research at the National MS Society discussed challenges in care and rehabilitation in patients with progressive MS. 

Kathy Zackowski, PhD, OTR

Articles

A Call to Action for Progressive MS Research: Kathy Zackowski, PhD, OTR

Funding Research in Progressive MS: Kathy Zackowski, PhD, OTR

Finding a Cure for Multiple Sclerosis: Kathy Zackowski, PhD, OTR

Challenges in Progressive MS Rehabilitation: Kathy Zackowski, PhD, OTR