Innovative Progressive Multiple Sclerosis Research

Why will progression be so severe for 10-15% of those diagnosed

that they will require 24-hour care?

 

WHY study people with the most severe MS progression?

We believe studying severely progressive MS willl provide important clues to benefit everyone with MS.   

 

WHY has no such comprehensive MS research of this population ever been done? 

The answer is logistics and costs.  Most people with this level of progression are home-bound or in nursing homes, making them very difficult to locate and assess. Even if they could be located and enrolled in studies, costs for imaging, blood sampling, cognitive and optical testing would be exceedingly high. 

 

HOW has it been possible for BNAC to conduct this comprehensive study? 

A member of BNAC's Advisory Council connected Buffalo Neuroimaging with The Boston Home, a Dorchester, Massachusetts skilled-nursing facility specializing in residential care for people with MS. Together, we designed CASA-MS, a unique and comprehensive pilot study comparing progression of those with such severe MS symptoms  they require 24-hour care with those of the same age, sex, and number of years with an MS diagnosis but having much less severe disease progression. BNAC's Advisory Council then removed the financial barrier by raising $500,000 to conduct CASA-MS Phase 1 of research.

 

FINDINGS of CASA-MS Phase 1 Pilot Study

On October 23, 2024, Robert Zivadinov, MD, PhD and principal investigator of the studies, provided a summary of three CASA-MS published papers at a presentation at The Boston Home attended by study participants, other Boston Home residents and staff,  friends families. It was  also available by Zoom. 

Results: 

  • Loss of grey matter in the brain, not lesions in the white matter, is the key factor causing MS progression to the severe state  

  • New tools to better assess grey matter damage were developed

Click  University at Buffalo Press Release to learn more about these findings. It contains a short video clip showing the poignant meeting via Zoom of a pair of CASA-MS "research twins."  While they are alike in age, sex, and the length of time since receiving an MS dagnosis, their lives are so very different because of the  severity of their MS symptoms.  This research seeks to understand why.

 

WHAT'S NEXT?  CASA-MS Phase 2  will build on the Phase 1 pilot study findings.

The University at Buffalo Internal Review Board has approved this Phase 2 follow-up study of 24 subjects with severe progression and a control group of 16 subjects with much milder progression.  All subjects will have brain scans on the same two MRI scanners: a high-resolution 7 Tesla scanner and a  0.065 Tesla low-resolution portable scanner. The researchers will develop special MRI sequences for the low-resolution scanner and use artificial intelligence to produce enhanced images. Comparisons between the results generated from the two scanners will have important implications for the study of severe MS progression.

The key questions to be answered are:

  •  Does gray matter in the brain change over time for the subjects in each group?
  •  What does analysis of data from the low-resonance portable MRI show?
  •  What further research is needed to conduct a Phase 3 Clinical Trial?

 

How Can You Help?   

CASA-MS Phase 2 study will cost $275,000.  As of 12/31/24 we have raised $189,705  in gifts and pledges.

 

PLEASE HELP US RAISE AN ADDITIONAL $85,295 to fund this study!

Please CLICK HERE  to give electronically or for instructions about how to give by check or make a pledge..

 

Do you have Questions?  Click here 

 

 

 

The story behind the CASA-MS research name and logo 

In creating a name that aptly describes the study, we wanted to also recognize our collaboration with The Boston Home, a long-term residential care facility located near Boston that specializes in serving people with Multiple Sclerosis who need 24-hour care. It is home to the main cohort of this progressive MS study. Besides being an exemplary care facility, The Boston Home is truly a nurturing home for its residents. The word casa, which means home in several languages, is a fitting name for research about that disease.

Our logo combines watercolor artworks by Rhonda and Mary Jo, two Boston Home residents with advanced MS who were close friends before Mary Jo passed away. They shared the challenges of living with MS, and the joy of participating in The Boston Home's individualized, adaptive art program. 

The CASA-MS logo showing Mary Jo's sun rising over Rhonda's casa represents our hope that this vital MS research will contribute to the dawn of a new day for over 2.8 million people living with progressive MS.

 

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