(Editor’s note: This summer, the Mass General Research Institute has two communications interns working with us as we work to highlight all of the research that takes place across Massachusetts General Hospital. Here is a post from our intern, Milo Goodman.)
Last month, Alyssa and I took a trip over to the MGH Martinos Center for Biomedical Imaging for the Alzheimer’s Association’s Longest Day event.
The event’s purpose was to share relevant research about Alzheimer’s disease and related disorders as well as information on how Mass General utilizes state-of-the-art imaging techniques and provides services that help to maintain quality of life for both the patient and the caregiver.
Between tours of facilities, poster presentations on groundbreaking studies, and speeches from experts and those who have been personally impacted by Alzheimer’s and related diseases, the Longest Day served to both raise awareness and educate those who may not know the ins and outs of these illnesses that change the lives of so many.
One speaker whose story touched my heart was Katie Brandt, the Community Resource Specialist for the Mass General Frontotemporal Disorders Unit.
Around the time of the birth of their son, Brandt’s husband, Mike, developed frontotemporal degeneration, a progressive neurological disorder referred to by medical professionals as FTD.
While FTD is marked by an overall deterioration in functioning, it primarily affects behavior and language at first. This degenerative disease is eventually fatal, however. On average, people with FTD live for 6 to 10 years after the onset of the illness.
As is the case for so many rare diseases, there is no cure yet nor are there any established treatments that could slow or stop the disease.
After her husband passed, Brandt knew she wanted to make a change for other caregivers and victims of FTD and related neurological disorders. Her family had faced 8 misdiagnoses before finally hearing the truth about Mike’s condition, and there were few resources outside of Mass General’s FTD support group available to help them cope with their situation.
Brandt has already taken steps to change this by telling her story and sharing her time with FTD patients and their families. Beyond working in Mass General’s FTD unit as a Community Resource Specialist and telling her story at events and conferences such as the Longest Day, she has also shared her experiences at both the Massachusetts State House and Capitol Hill.
In addition, Brandt began a nonprofit organization called Love Is Out There to educate the lay public and raise funds for the Association for Frontotemporal Degeneration and Mass General’s Frontotemporal Disorders Unit.
While the personal nature of this story made it very memorable and impactful, it is also important to note the groundbreaking scientific research that was featured at the event.
Dr. Jonathan Jackson, a Mass General neuroscientist who specializes in detecting and treating Alzheimer’s disease, mentioned multiple promising developments during his speech. One that stuck out to me was scanning ultrasound treatments, a noninvasive approach that opens the brain-blood barrier and clears amyloid deposits in the brain with help from lysosomes. Lysosomes are known as the “garbage disposal” systems of cells, while amyloid is a type of protein that is thought to clump together and gradually form plaque in the brains of Alzheimer’s and dementia patients.
When tested on mice, this treatment proved to be safe and effective in that it increased memory recall and reduced levels of amyloid plaque, but Dr. Jackson noted that much more research is needed before it can be used on human beings.
I’m so glad we attended this event, as it was both moving and eye-opening. I enjoyed learning about the different ways that Mass General is working to simplify the often complicated lives of patients and caregivers, and I am encouraged by the scientific findings that indicate a higher quality of life is on the way for those who are suffering.