Interviews

Alumni on their Fellows’ and GBHI Experience

Name: Jamie Talan
Alumna of 2016 Class
Neuroscience Journalism
Home Country: USA

Spending six months in the clinic with all types of dementia patients was the most amazing professional experience of my life. It taught me that I can’t expect anything when I hear the word dementia. Nothing is ever the same for patients and their caregivers. It is with those lessons that I have continued with my GBHI mission: to educate the public about one disease that I find particularly compelling – a dementia of vision and spatial perception.

I knew the road less traveled and I understood that there was very little in this country for patients with posterior cortical atrophy and the people who love and take care of them. As a science journalist, I knew I could reach dementia experts and PCA researchers and clinicians who could buy into the idea to create education and support to spread the word on PCA. Ultimately, creating a base in the US is not just helpful for patients but also for scientists who need a larger research base.

In August, I launched a website and a monthly lecture series and Facebook PCA Support Group. In one week, I had more than 60 people sign up. The lectures are done on ZOOM, a technology that we learned well during the fellowship. Michael Schaffer, computer wizard, led me thru my first two ZOOM lectures and the last one I manned solo. It was a great success.

I am educating and connecting people from all over the country. My idea for a support group for patients and their families grew from my time at UCSF’s Memory and Aging Center. I worked with several patients in support groups and spent some time in the groups, listening and learning. Our support group is slated to begin at the end of November. In the meantime, patients and their caregivers are already forming connections during the ZOOM lectures.

I believe that my contribution to the program will help countless people over the years – people who are in their 50s and 60s and can’t see things that are right in front of them. People who are afraid of going cortically blind and developing cognitive problems.

It is with thanks and appreciation to Dr Miller, Dr Valcour, and the entire staff at the UCSF-MAC, Trinity College, GBHI, and my fellow fellows that I have chosen to volunteer my time and expertise to raise awareness about PCA. It is one disease without much of a voice, and the model could be used for other rare dementias.