Friday 11th September 2020
DYNACURE
ZOOM MEETING.
I took a
huge chance and to my surprise and relief, it paid off handsomely. I don’t remember where, but I saw that
Dynacure were looking for people living in the USA with Autosomal dominant CNM
to share their stories. This was around the end of July 2020. I don’t live
anywhere near the States but I have recently published my book, Living with
CNM, which tells my story from the day I was born until early 2020. I
contacted them and much to my delight Lori Gorsky soon after bought 12 copies
of the book. Printing, shipping and reading the book takes time of course, so I waited with bated breath to hear
what they thought of my effort. Near the end of August Lori asked
whether I would be available to
talk to her and a few of her colleagues They had some questions for me.
What did that mean? Did they not understand what I had written? Were they going
to ask tricky questions about my deepest darkest, fears? Did they like my book
or was it seen as rubbish by these learned people? Anyway, I agreed to a Zoom
meeting the following week even though I haven’t the faintest idea what Zoom is
or how it works. I know someone that has used Zoom before though so I begged them for, and got a quick crash
course in how it worked. On the day I logged in just fine but as luck would
have it Didier, my brother-in-law, tried to Skype me three times just five
minutes into the meeting. Bing-bong, bing-bong. He would not stop until Audrey
phoned him to explain that I was in a very important meeting. I was trying hard
to impress these good people but I was constantly being interrupted. Shortly
after that, the buffering started which caused me to miss a lot of the
introductions. My poor little 10 Mbps WiFi connection was just not able to feed
the seven video in/outputs all at once. Poor Lori who was controlling the show
had to keep muting people and eventually cut my video feed altogether. I was a nervous wreck by this time,
but we managed a reasonable conversation, without seeing me, after that.
It turns out that the Dynacure people may be experts at science but they also need to know the people that they are
dealing with. How do we live? What difficulties do we face, how do we overcome
them, what bothers us most? What are we looking for in a cure? If a total cure
is not possible then will we be willing to settle for something less? How
are we coping with life now and also, how are our caregivers coping with caring
for us, they asked. Audrey sat in on the meeting and everyone was very
interested to hear her side of the story, which is very different from my take
on events. I was sad when the
meeting had to end after a very short hour, but at the same time relieved that I
had survived without any major mishaps.
I must
thank Dynacure for a very informative meeting where I learned a lot about their
Dyn101 trials and how they are progressing. The program has sadly been much
delayed by the Covid-19 pandemic but
is back on track now. I met and got to know a lovely group of people
that are interested to hear our story, which I will continue to tell them off as
it evolves over time. They even said they liked my book. 😊
I wish them
all of the best with their work and
look forward to whatever assistance they can offer us in future.
Participants
were;
Stephane
van Rooijen, CEO Dynacure.
Belinda
Cowling, Chief Scientific Advisor.
Chris Freitag,
Chief Medical Officer.
Stephanie
Hoffman, Market Development.
David
Garrett, Chief Financial Officer.
Leen
Thielemans, Chief Development Officer.
Lori Gorski,
Patient Advisor and meeting coordinator.
End.
