The latest CJD Foundation Newsletter puts out another call to action

Dear Friends,

Our fourth annual Aaron Kranitz Memorial Golf Tournament held on August
14
was our most successful one so far. We had 20 foursomes and almost
perfect
weather, a few sprinkles but they weren’t even noticed by our devoted
golfers. The evening festivities included a live auction hosted by
Doug
Dieken, a former player for the Cleveland Browns and now the voice of
the
Browns Monday Night Football. Our net profit from this event was over
$42,000. Our appreciation and gratitude goes to our golf chairperson,
Ruthie George and to her committee, Sybil Willen, Ana Betro and Pam
Goldfarb. They worked tirelessly and the results show it.

The FDA meeting held last week, September 18 and 19, was one of the
most
interesting ones I’ve ever attended. The World Health Organization has
suggested that infectious prion proteins be referred to as PrPtse
rather
than PRPsc. We heard presentations by seven researchers who are in the
process of developing a pre mortem diagnostic blood test for prion
diseases.

We were not asked to vote on any issues this time. The meeting was
held to
provide information on promising experimental TSE blood clearance
studies
and possible criteria for approval of a blood donor screening test.

One very interesting presentation was given by Dr. Claudio Soto. He
and his
group are developing methods to detect PRPtse in blood and blood
products.
The specificity of this test has been boosted to 89% with no false
positives. They are working on increasing the detection levels and
also
considering the ethical issues such a test presents. If perfected this
could hold the key to protecting our blood supply as well as provide a
critical tool for early diagnosis when a cure for prion diseases is
discovered.

Wednesday I spent the day on Capitol Hill with Dr. Gambetti. We
visited 10
offices focusing on those members of the House and Senate serving on
the
Appropriations committee as well as the Labor HHS sub committee. We
asked
those we met with to help maintain the CDC budget allocation for human
surveillance at the FY 2006 level of $5.5M instead of the projected cut
to
$5M. The president has asked for a cut in government support for
science
and research. This possible cut means that the funding for the
National
Prion Disease Pathology Surveillance Center will be affected. It was
an
exhausting but hopeful day.

PLEASE help by calling or writing a note to your state senators and
congressmen. Tell them that CJD Surveillance is very important to you,
especially in light of the USDA’S cut in BSE testing by 90%.

I was honored to be asked to give a welcome address at the Prion2006
meeting
in Turin, Italy October 4. The meeting is titled “Prion
2006-Strategies,
advances and trends toward protection of society”. It is sponsored by
the
European Network of Excellence, NeuroPrion. For the first time, they
are
inviting representatives from CJD Family Groups from European
countries.
They have asked me along with Dr. Ignazio Roiter, founder of the Fatal
Familial Disease Foundation, to help create the basis for the formation
of a
European Family Association to join our International CJD Support
Alliance.
This Alliance, you may recall, was formed at our conference this past
July.
It presently consists of support organizations from Australia, Japan,
The
United Kingdom and the United States. We are sharing information,
resources
and plan to speak out in a united global effort on behalf of patients
and
families the world over.

I am greatly looking forward to representing all of you at this very
important meeting. You can look at the program by logging on to the
website
www.prion2006.com. Look for a full report when I return in mid
October.

Again, I ask for your help in our efforts to keep human CJD
Surveillance at
the same level funding as last year. Please contact your
representatives.
In the scheme of the U.S. budget, this is a very small amount but means
a
great deal to Dr. Gambetti and the work of the NPDPSC.

Linda Gregson has been conducting our online support groups. We welcome
all
of you to join. Check our website www.cjdfoundation.org for
information and
instructions.

My best to all of you,
Florence