March 30, 2023

News from The Boston Home

CASA-MS Research Update

As we recognize MS Awareness Month, we are pleased to provide a significant research update from The Boston Home's CASA-MS research partnership with the University at Buffalo Neuroimaging Analysis Center. TBH and BNAC have completed Phase I of CASA-MS with preliminary

results that surprised—and excited—researchers.

Brain lesions are the biomarker most widely used to determine MS disease progression. But CASA-MS preliminary results strongly suggest the volume of white matter lesions is neither proportional to, nor indicative of, the degree of severe disability in patients. “The absence of material differences in white matter brain lesion burden means this is not a significant driver of severe disability progression, despite the fact that many MS disease-modifying treatments are focused on slowing accumulation of white matter lesions,” says Robert Zivadinov, principal investigator.

We couldn’t know what the CASA-MS study would show because no one has done this research previously,” Dr. Zivadinov explains. “What we know now is that the differences between the two groups we studied are striking, and striking in ways that may surprise many of us in this field. I am confident these findings open new doors for both people with severe disabilities, as well as the promise of new insights for the millions more who worry where their disease may take them.”

CASA-MS compared two sets of 53 multiple sclerosis patients who had the same gender and disease duration but vast and measurable differences in the extent of their physical and cognitive disabilities. Residents of The Boston Home participated in the study, representing the more severely disabled cohort. Read on to learn about the significant and surprising preliminary study results:

‘Usual suspect’ lesions appear not to cause most severe disability in MS patients

MS Awareness Month Guest Speaker

Dr. Annie Brewster

Health Story Collaborative Founder and Executive Director, Co-Director of Healing Story Sessions

On Wednesday, March 8th, The Boston Home proudly welcomed Dr. Annie Brewster, founder of Health Story Collaborative, as our MS Awareness Month Guest Speaker. Dr. Brewster is an Assistant Professor of medicine at Harvard Medical School, a practicing physician at Massachusetts General Hospital, and a writer and storyteller. She is also a patient, diagnosed with multiple sclerosis (MS) in 2001. Dr. Brewster is widely published in the press and is author of The Healing Power of Storytelling: Using Personal Narrative to Navigate Illness, Trauma, and Loss (2022)

Dr. Brewster shared her experience of being diagnosed with MS and the disconnection she often felt with the healthcare system, both as a patient and a provider. She discussed how her personal experiences combined with the research supporting the health benefits of narrative led her to found Health Story Collaborative (HSC). HSC is a nonprofit dedicated to helping individuals living with health challenges find meaning and ultimately healing, through storytelling. Residents welcomed the opportunity to share their own experiences of coping with diagnosis and the challenges of navigating healthcare, and the therapeutic benefits of writing their own stories.

Teaming up with the Leahy-Holloran Community Center to Teach Students about Assistive Technology & Giving Back

Students from Dorchester's Leahy-Holloran Community Center have been visiting The Boston Home afterschool to learn about Assistive Technology and 3D printing in our Wheelchair Enhancement Center. Perhaps the best lesson of all is that a little bit of caring and thoughtfulness can go a long way toward improving someone's quality of life. Corinne Curran, who leads the class, shared with students that Occupational Therapist Julie Jacobs had identified a resident need: Paula D. needed a new cup holder for her wheelchair that she could easily access with her left hand, as she is unable to use her right hand. Tara, a student in the class, was eager to help. She used a caliper to precisely measure the size of Paula's cup and 3D printed a new cup holder. Since Paula loves to sit outside in the sun, Tara wanted to make sure Paula could take everything with her that she might need. So, Tara also 3D printed a custom eyeglass holder that will be positioned on Paula's chair. Tara even made Paula a special little box with her name on it, "in case she wants to hold some candy." Paula says she will use the box to hold a few butterscotch, her favorite candy.

Assistive Technology Specialist Kim Davis Featured in NRRTS Directions Magazine

Congratulations to Kim Davis, PT, MSPT, ATP, on being recognized by the National Registry of Rehabilitation and Technology Suppliers (NRRTS) in the most recent issue of Directions Magazine. NRRTS's mission is to support professional complex rehab technology (CRT) suppliers through education and advocacy to improve access and provide quality services to people who rely on CRT. Check out the feature article on page 18 to learn about Kim's work at The Boston Home as well as more about her career, including her work on the board of Eleanore's Project, a nonprofit dedicated to improving the quality of life for children with disabilities and their families.

The Boston Home and

Dr. Salvatore Napoli Announce Joint MS Clinics

The Boston Home and Dr. Salvatore Napoli from the Neurology Center of New England are pleased to announce their joint collaboration in establishing an MS clinic for the residents of The Boston Home. The MS clinic will be run and organized by Multiple Sclerosis fellowship trained neurologist, Dr. Salvatore Napoli and his staff from the Neurology Center. They will provide up-to-date, comprehensive MS care including symptom management and individualized treatments. Dr. Napoli received his training in Multiple Sclerosis/Neuroimmunology from the Brigham and Women's Hospital Harvard MS Fellowship program and was the recipient of the Sylvia Lawry National MS Society Fellowship. He will also provide educational sessions for the residents of The Boston Home. The Boston Home is a residence for 96 adults with multiple sclerosis and other advanced neurological disorders, which also offers a day outreach program, wheelchair enhancement center and seating clinic, and rehabilitation services. Given that all of The Boston Home’s residents are full-time wheelchair users, transportation to medical appointments can be time-consuming and frustrating. The collaborative MS clinic offered on-site at The Boston Home on a quarterly basis will make it much easier and more convenient for residents to receive timely treatment.

Celebrating St. Pat's!

March came in like a lion, with wind, rain and sleet storms that somewhat delayed our St. Patrick's Day festivities. Nevertheless, we had the opportunity to enjoy a delightful afternoon of Celtic music with the Boston Rover's on Wednesday, March 22nd. Let's hope the "luck of the Irish" is with us, and March goes out like a lamb!

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