2013 Spring Forum Newsletter - page 1

Cutaneous Lymphoma Foundation: Making sure each person with cutaneous lymphoma gets the best care possible
Cutaneous Lymphoma Foundation
PO Box 374
Birmingham, MI 48012-0374
telephone: (248) 644-9014
fax: (248) 644-9014
email:
Forum
is published by the
Cutaneous Lymphoma Foundation.
Disclaimer
The Cutaneous Lymphoma Foundation does
not endorse any drugs, treatments or products
reported in this newsletter. Information is pro-
vided for informational purposes only. Because
the symptoms and severity of cutaneous lym-
phoma vary among individuals, the Cutaneous
Lymphoma Foundation recommends that all
drugs and treatments be discussed with the
reader’s physician(s) for proper evaluation,
treatment and medical care.
INSIDE THIS ISSUE
From the President and the Chief
Executive Officer . ............................ 2
In Memorium: Thomas Frank .......... 3
What’s Next ?
A Patient’s Perspective: Jeff Ward .... 4
My Personal Journey:
Joe Carey.......................................... 5
Global Rare Diseases Patient Registry
and Data Repository.......................... 6
CLARIONS Scientific Review Board.. 7
Patient Educational Opportunities ..... 8
First Annual 2-Day Patient
Conference........................................ 9
Silent Auction..................................... ..9
Scientifc Meetings Recap................10
Young Investigator Award ............. 12
Rare Disease Day 2013. .................. 13
CLARIONS Grant - How to Apply....16
Spring 2013
Forum
utaneous Ly pho a Foundation: Making sure each person with cutaneous ly pho a gets the best care pos ible
In line with
our mission to
support every
person with
cutaneous
lymphoma
by promoting
awareness and
education,
advancing
patient care,
and facilitating
research, in January 2013 the CLF
announced the launch of the new
CLARIONS research grant.
Over the last 10 years, we have been
providing two young investigators with
a Young Investigator Award (YIA)
but this new initiative expands CLF’s
commitment to funding promising
research. The YIA awards fund the
travel expenses for researchers whose
cutaneous lymphoma projects are being
presented at the American Society of
Hematology (ASH) in December, and
the Society of Investigative Dermatology
(SID) in May.
These young investigator awards have
been helpful, but we wanted to do
more to support research in cutaneous
lymphoma. With the generous donation
from a patient’s estate specifically
dedicated to funding research, our
board of directors approved the first
ever Research Awards Program (RAP),
exclusively committed to funding
cutaneous lymphoma research. The YIA
program is a component of the RAP,
with the cornerstone program being the
CLARIONS research grant.
CLARIONS Research Grant
The CLARIONS is the signature
initiative under our RAP Program.
CLARIONS stands for
C
uring
C
utaneous
L
ymphoma by
A
dvancing
R
esearch,
I
nnovation and
O
ffering
N
ew
S
olutions. We are excited to partner
Advancing Research - An Evolution
Advancing Research...continued on page 7
CLARIONS Grant Leader - Compassionate Visionary
Charts a CLARION Path for CTCL Innovation
The Cutaneous Lymphoma Foundation is extremely proud that
Thomas S. Kupper, MD will be serving as the Chairman of
its CLARIONS grant program. The Forum caught up with Dr.
Kupper on April 3, 2013 and engaged in the following Q&A
Q: How did you become interested in cutaneous
lymphoma?
A: I have had the privilege of working in the area of CTCL
since 1986 when I was working at Yale. Also, since joining
the Dana Farber Cancer Center in the 1990’s, CTCL has been
the focus of my work. As a matter of fact, I saw twelve CTCL
patients today. I usually see approximately 12-15 CTCL patients every Wednesday in
my clinic.
Q: Why is supporting research in cutaneous lymphoma important?
A: The most important reason for engaging in CTCL research is patient care.
Patients and their loved ones stare at me in the clinic every Wednesday. The faces
of the patients and their caregivers motivate me to advocate for CTCL research.
CLARIONS Grant Leader...continued on page 6
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