May-June 2008 Briefing
Click here for a directory of
past Briefings
 Dear U.S. Friends: FlakeHQ.com is extremely
happy to align itself with
Psoriasis Cure
Now! in an ongoing campaign to send letters to the United States Congress. Federal funding
for psoriasis research has increased over the past year, but the gap between
what it is and what it ought to be remains wide. If you click on the
button to the right, "Contact Congress NOW," you'll link to a page at Psoriasis
Cure Now that makes sending a letter to your Representatives and Senators
VERY easy. If you use this link, you will also get heartfelt thanks
from BOTH Psoriasis Cure Now and FlakeHQ. (Click
here to read FlakeHQ's interview with Psoriasis Cure Now founder,
Michael Paranzino.) -Ed |
In This Briefing:
Finkelstein's Next Documentary
"Health Talk"
The More I Listen, the More I Like It
Enbrel Being Researched for Use by P-Kids
In Flaker Creativity This Update
 Finkelstein's
Next Documentary
Fred Finkelstein, creator of the documentary My Skin's On Fire (2006)
is working on a new documentary about kids with psoriasis — working title,
I'm Just Like You. You can view a six minute preview of this
new "project-in-process" at Finkelstein's web site:
http://www.skinfire.org.
Right now, Fred is
wearing his "executive producer" suit, which means he's scrambling for money
to produce this next documentary. He was successful at this with My
Skin's On Fire and, judging from his 6 minute promotional video for
I'm Just Like You, I have no reason to believe he can't do it again.
His first psoriasis
documentary, My Skin's On Fire, provided many portraits of what it's
like to live with moderate to severe psoriasis and psoriatic arthritis.
No one can watch this program and walk away still thinking psoriasis is a
"cosmetic condition." Now, the P-kids really deserve similar exposure.
I've said often at FlakeHQ that I can't imagine how bad it must be growing
up with moderate to severe psoriasis. I know that parents of P-kids
suffer even more. Someone once said that the job of parenting is like
having another system inside our bodies, like our digestive,
respiratory, circulatory and skeletal systems. Parenting means health
and wellness, stress and joy, just like those other systems that define what
we mean by "living." When a child has a chronic condition like
psoriasis, parents feel their pain, not figuratively but concretely.
I'm confident Fred will capture all this and more in I'm Just Like You.
Please go watch the 6 minute promotional video. Do what you can to
help out. Let Fred light another fire under the world for us.
"Health
Talk" The More I Listen, the More I Like It
Health Talk is a web-based media
channel (though it does radio distribution, too). I knew nothing
about it until last October, when I was contacted by a producer to be a
prospective guest on "Ross Reynold's Health Talk show about psoriasis."
I was the guest on December 6th, last year, and had a wonderful
experience. But that's not why I bring "Health Talk" up in this
update's Briefing.
I want to pitch the operation as a
great way to get current information about "what's going on" in the
psoriasis world. I know we have lots of sources, and picking one
(or a few) to promote over others may be unfair (perhaps even unwise),
but I have been overly impressed with the news emails I've signed up to
receive and the in-depth articles and interviews they create and archive
on the web.
If you haven't explored "Health Talk,"
here's a good place to start.
http://www2.healthtalk.com/go/psoriasis/news/.
Enbrel Being Researched for Use by P-Kids
Speaking of "Health Talk," got this story from them. Immunex, the
manufacturer of Enbrel, has funded the first full-blown study of a
biologic for children and teenagers with psoriasis. Surprisingly,
the study is suggesting children respond even BETTER than adults to
Enbrel — they respond faster, with statistically better results, even on
lower dosages. We may be quite a ways from FDA approval of Enbrel for
P-kids, but this study surely moves us in that direction. For the
full story,
click
here.
In Flaker Creativity
this Update
Poet Laureate Sherry Sheehan has brought us two poems and I've asked
permission to post a third. First is
Noise.
Years ago, I called facial psoriasis "noise" that gets in the way of
communicating with other people. Now Sheehan has taken that
concept and made it into something extraordinary.
Trying Turmeric was
something Sheehan was compelled to write because she is, in fact, trying
turmeric (curcumin). As you see when you jump to this poem, it's
also illustrated! In this month's mail there are two pieces of
correspondence about turmeric (was it something I said?). Sherry
has sent us a non-scanning letter (i.e., not a poem) about her trial,
and Rae reports on a very successful turmeric trial (so far.) The
interesting difference between the two is Sherry is using turmeric
topically while Rae is taking it internally (a.k.a. systemically).
Maybe we have the makings of a new TV reality episodic: Biggest
Clearer. Nah. Finally on Sheehan ... last month her poem
Explanation to
a Grief Group won a prize and she emailed it to me simply to read because it was
not scheduled to appear anywhere else on line. Though the poem has
nothing to do with psoriasis, I liked it so much I asked Sherry if I
could post it here. Beings that she's our Poet Laureate and kind
of under the gun when it comes to making us happy, she said okay.
"Explanation to a Grief Group" is a sad but thoughtful poem and one that
all of us can relate to directly or indirectly. I hope you
enjoy it. You can get to all three new poems by Sherry Sheehan by
visiting her page at FlakeHQ.
More chapters of Flake: Confessions of a Psoriatic are posted with
updating "postscripts." Either start here
at the Table of Contents, or click on a specific newly-updated chapter:
Contents
www.flakehq.com |
