recently i was contacted by the alzheimers association for
an interview
they wanted to know more about the trial match program
i was contacted by a writer from the los angeles area who wanted
to interview me about the trial match program and other ways
folks could get involved with the research studies
what was to be a 30 minute interview turned into an hour interview
with a later call back for more information
we discussed the trial match program and the nih clinical trial program
then
he asked a lot of questions about my story and how i was diagnosed
and how i am doing now
an aside
here are some links i gave him that were about my story
here is a clinical trials link to a short paragraph about my involvement
its the 3rd one on the page
here is an article from the austin paper
here is a video on my story from ut southwestern
here is a newsletter from the ut southwestern alzheimers center
since it had been over 7 years since i had entered my information
in the alzheimers association trial match program
i signed my wife she up to review how it was done
the link is www.alz.org you click on research
there is the trial match tab
which i clicked on and entered her information
now she doesnt have any risk really for alzheimers disease
however
she matched with close to 40 studies in the california area
yes
they need healthy volunteers
many are used as the controls for some of the studies
they need caregivers or potential caregivers for studies
they need folks for healthy living studies
as i discussed with the writer this week
the two big limits on alzheimers research
that is slowing down our discovery of a treatment and or cure
are
money
volunteers
who would have thought that not having enough volunteers
would keep us from finding a treatment or cure
yea
who would have thought
no matter where you live
there is a study that you will qualify for that will be nearby
eg
some of the drug companies that have a drug similar to the one
i am on (aducanumab)
have spread their study sites almost uniformly across the us
so that most of you are near a treatment site
if you are over 50 and share my dna you may qualify for these studies
where people will be treated before the disease shows up
many of you are 10-20 years away from the symptoms showing up
then
sorry to say if you wait until then its really probably too late
without volunteers the research will not be done fast enough
the study i am in hasnt filled up yet
even after a year
and
this is the most promising study that has the potential to be the
first drug that will actually slow the disease down
whats the limitation
getting folks to volunteer
this is the point i hope he makes when he writes about the
interview
is that we need folks to volunteer via trial match
or clinicaltrials.gov to help us in our fight to find a cure
yes
it takes a commitment to do this
but
it wont get done if you and others dont get involved
so
even if you are in doubt
got to trial match and sign yourself up
even if all you do is see what studies you qualify for
here is the direct link to trial match
i can say that
when i die
folks will look at my obituary
and
say he did his part
he contributed to finding the cure for alzheimers diease
we need your help
the organicgreen doctor
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