Aug
6
Boston Event
by Maxim in Bike Tour, Boston to Austin, COYOD
At the MA/NH Alzheimer's Association office
Back in April, we posted the Spoketube video “The Music in Hugh” on Youtube. A comment from a lady wrote “Would you mind if I showed this video at a conference in May.” After commenting back and forth to one another, we exchanged information and got in touch. The lady happened to be Nicole McGurin, who works for the Massachusetts/New Hampshire Alzheimer’s Association Chapter. Over the next few months we threw back and forth ideas about a possible event in Boston when we visit. That event was tonight.
The folks at the MA/NH Alzheimer’s Chapter decided to throw an event dedicated to COYOD (Children Of those with Young Onset Dementia). They invited a doctor from the area to speak about the genetic factors and risks of Young Onset Dementia. They also asked us if we would like to speak. A flier was created and they invited as many COYOD as they could get in touch with in the area. The RSVP list grew to 40. RSVP lists historically are misleading, but tonight history did not repeat itself. It seemed that minus no more than 4 or 5 people all who talked also walked. A local restaurant donated their conference room and it was packed. I never dreamed that I would see a room full of so many COYOD in one place at the one time.
The doctor, Dr. Forester spoke for 20 minutes about genetics and people curiously asked question at the end. We were then invited up to speak. I told our story, talked about Music and showed “The Music in Hugh.” People were very touched by the images of my Dad’s passion for music. Emily spoke eloquently about the mission of Spoke Your Mind, our struggles with Young Onset Dementia and the power of storytelling.
The energy of the room evolved throughout the night from anxious to hopefulness. People became acquainted with another and exchanged information.It was magical to see this many COYOD together is one space.
The Alzheimer’s Association is planning to use the information they collected to ask what type of services would COYOD like to see available (support groups, monthly seminars, etc.).
What a way to kick off the second leg!