last friday my wife and she made the trip to ucla to see the brightfocus documentary called turning point about the story of the development of the alzheimers drug solanezumab and its subsequent failure to meet its endpoint in its phase three research studies
below is what bill gates the billionaire who recently donated 10 million dollars for alzheimers research said after he saw the documentary
from the brightfocus.org website
Gates said, “Turning Point is an excellent documentary that gives us an inside look at the doctors, scientists, and patients who are working to uncover the mysteries of Alzheimer’s disease through clinical trials.
the moderator was the principal investigator from the ucla california alzheimers disease center
on the panel with me was
the interim director of the ucla easton center for alzheimers research
a neurologist researcher for the ucla easton center for alzheimers research
the executive vice president of alzheimers los angeles
the director of the drug discovery lab ucla department of neurology
before we all watched the documentary i sat by the interim director and we talked for about 30 minutes
he seemed to be intrigued by my story over the last 9 years
during the q and a afterwards he was the one that asked me a question asking me to repeat my story so everyone in the audience could hear it
now ive done a 50 minute presentation on this before but i condensed this one to 5-10 minutes
when i finished everyone clapped and some stood up
another question i got was what would i recommend for someone who had memory issues or if their family had issues
that was an easy one to answer since ive written and talked about it numerous times
simply i said
get evaluated by your primary care or a neurologist
make the appointment only for memory issues
if its for someone else dont let them go in by themselves
do online memory testing before you go or fill out online forms on the loved one and take them in with you
write down what your issues are
the panel got a lot of questions most of them i could have answered on research and medical questions
even though i could have answered i deferred to these other panelist since they were the experts
however
i realized how much i knew about all this since i knew the answers
i had read about most of the research studies they talked about or since i have talked about them myself with folks
i felt honored to be on the panel with this group
now
ive watched the documentary three times
my remarks would be similar to what bill gates said
i watched a well know researcher for the solanezumab study cry as she talked about the drug as it had failed to reach its desired end point
she was hoping for a treatment for her family and for herself and for her grandkids
she does have hope since she is the director of the big a4 study where prealzheimers patients are receiving much higher doses as those given in the documentary and these folks will receive it for a long extended time
right now the study participants have been on the drug for 6-7 years
she had hope that these prealzheimers patients who have no symptoms yet but have the positive amyvid pet scan for amyloid that they will have a delay in when the disease shows up in them
maybe none at all
there is hope for this study to be successful
i tried to get in the a4 study several years ago but was denied entry since my original memory testing was abnormal even though subsequent memory testing is in the normal range
this documentary is being shown across the us frequently at locations that do alzheimers research
the director did the glen campbell documentary on his journey with alzheimers called
ill be me
so
i liked it
bill liked it
if you are interested in alzheimers research watch this documentary
on the brightfocus website linked above you can watch the trailer
the first time i watched it as i told the audience that day i was down since it hadnt been very long since the biogen aducanumab study i was on had been canceled
i really had a negative attitude as i watched the documentary
what got to me though was the patients and their caregivers and the researchers as they described their feelings
ok they all cried and i cried all three times
the second time i watched it was after biogen had reactivated its aducanumab study and i found out i might be able to be put back on the drug next spring
i paid more attention that second time to the volunteer study subjects and their families
then
the third time i was more clinical in my viewing of the documentary
as i paid more attention to the details of the film
there were a lot of well known alzheimers researchers interviewed in this documentary
all of them i have heard talk before or read their interviews
watch the documentary if you get a chance
then
consider volunteering for a study
as i told them that day the lack of
money
clinical volunteers
thats why we dont have a treatment and cure yet for this disease
i would like to thank all who donated to my walk team this year
we had another successful walk and fundraiser
so
im raising money check
im a clinical research subject check
and
how about you
go to clinicaltrials.gov for sites to volunteer
you can follow me on my facebook blog page link organicgreendoctor
the organicgreen doctor
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