Forum Fall 2013 - page 2

Cutaneous Lymphoma Foundation
2
There is a chill in the air and the
days are getting shorter. It’s back to
school, back to work and looking
toward the upcoming holiday
season. For us at the CLF, it’s back
to traveling around the country
bringing our patient educational
programs to you. Although a busy
time for us, having the chance
to connect in person is magical.
Hearing your stories, learning about
your challenges and listening to
your ideas of how we can serve you better makes all the
travel worthwhile. We read every evaluation and take
notes at all of the events in order to enhance and expand
our programs. Let us know what you think!
Along those lines, I hope you have had a chance to
check out our new Online Learning Center. We took the
opportunity to film the experts at our two-day patient
conference so we could bring their knowledge to you
wherever you are. Not everyone is able to join us at a
live event and we know how important hearing from
the experts can be as you navigate your journey with
cutaneous lymphoma. Take a moment to check out the
new videos and send us your comments. Were they
valuable? Informative? What other topics should be
covered? The goal is to continue to add new content and
we want your feedback.
If you are an individual who will be accessing the
Healthcare Marketplace for your healthcare insurance,
you will want to read Christina Bach’s article on page
6. Also check out the new Cancer Insurance Checklist
(CancerInsuranceChecklist.org) on page 7. If you are
participating in the Marketplace, we would like to hear
about your experience. We are collecting input from
our community to share with the other groups in order
to determine how well cancer patients are being served
through this new insurance exchange. With that data, we
hope to build advocacy efforts to make the system better.
This fall finds our Scientific Review Board diligently
reviewing the 23 research applications we received this
summer for our CLARIONS grant. The award recipients
will be announced at the American Society of Hematology
meeting in December. This is an exciting new initiative
for the CLF and the start of a long commitment to funding
cutaneous lymphoma research. Watch the website for
grant updates.
As always, we are here to support you in your journey. Let
us know what else we can do for you. It is an honor and
a privilege to serve you and I look forward to connecting
with you somewhere along the way.
Enjoy the beauty of the season,
From the Chief Executive Officer
The End of the Beginning
This year has been marked
with unprecedented milestones
for the Cutaneous Lymphoma
Foundation as it continues to
celebrate its 15th anniversary.
The launch of the CLARIONS
(Curing Cutaneous Lymphoma
by Advancing Research,
Innovation and Offering New
Solutions) research grant program establishes the first
research program dedicated to cutaneous lymphomas.
The first award recipients will be announced in December
2013.
The Foundation’s first two-day Patient Educational
Forum took place in June in Philadelphia and provided a
new and exciting format that featured programs focused
on improving quality of life. Patients and caregivers had
an opportunity to come together, become more informed
and expand their community of support.
The Cutaneous Lymphoma Foundation Online Learning
Center was recently established (
/
online-learning-center) and expands the Foundation’s
on-line resources and capacities. New video content
contains lectures by experts on a variety of topics along
with an “Answers from the Experts” feature addressing
frequently asked questions. It provides a quick and easy
way to access up-to-date and accurate information about
cutaneous lymphomas.
When I view this year’s accomplishments in perspective
with the past fifteen years of growth and development,
it is apparent that the Foundation has reached an
extraordinary level of success. It has clearly become a
trusted and respected organization and recognized as the
leading voice for patients in the cutaneous lymphoma
community. My term as President of the Board of
Directors of the Cutaneous Lymphoma Foundation
comes to an end this fall. In stepping down, I feel that
the organization has entered into a post-founders era and
that the end of the Foundation’s beginning has occurred.
It is a triumphant milestone, worthy of admiration and
celebration. I am confident that the next chapters in
the Cutaneous Lymphoma Foundation’s future will be
equally impressive and exciting.
From the President
Stuart R. Lessin, M.D.
Susan Thornton
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