Cutaneous Lymphoma Foundation
2
A New Season Begins!
As I write this letter to you, the final
days of summer are fading. There is
a crispness in the air. Back to school,
back to the serious work after summer
vacations and a renewed energy
after the summer break. We have an
exciting fall planned for you!
Although the summer is typically a
quiet time for the CLF given that
we take a break from live events, it
has been an unusually busy summer.
We kicked off a huge project to update our technology
infrastructure so that we can better support you. The CLF
team has been spending many hours cleaning-up our current
database, setting up the new system with plans to flip the switch
on the new technology this fall. You may see some emails from
us over the next few months double checking the information
in our database and making sure we know how you would like
us to connect with you. We are also working on enhancements
and additions to our website to provide easier ways to navigate
and access the information you need. Look for new features
later this year.
July and August found us spending time in Washington, DC
on a variety of advocacy fronts. We participated in the lobby
days on Capitol Hill hosted by One Voice Against Cancer,
engaged with the FDA on two occasions, one with other
patient advocate groups at the first Patient Advocate meeting
and a second one-on-one meeting with the patient liaison team.
We joined the Regulatory Education and Action for Patients
(REAP) consortium and attended the semi-annual meeting
hosted by the National Patient Advocate Foundation. REAP
is a collaboration of over 40 different patient advocate groups
that come together to determine what legislative and regulatory
priorities should be supported and to be updated on the impact
of new laws and regulations on patients. With the complicated
healthcare laws, we are doing our best to understand the
impact they will have on you and make sure the CLF patient
voice is included. You can read more about these events in this
newsletter and on the website.
Stay tuned for announcements later this year on more exciting
projects that are underway. We will share details as these
programs are ready to roll out. In the meantime, enjoy the
stories on the following pages from patients and those that love
them.
Be inspired to live the best life you can, even with cutaneous
lymphoma. Keep us posted on how you are doing. Drop an
email or give us a call and let us know what we can do better.
We are always open to improving our programs and services.
Sign up for a fall event - we’ll see you there!
From the Chief Executive Officer
A Vote for Science
The election season is upon us
and regardless of your political
leanings; I think most people will
agree that a vote for science is a
vote for progress. The more we
invest in biomedical research,
the faster we can translate
scientific discovery into medical
advancements.
The Cutaneous Lymphoma
Foundation has always recognized
the importance of scientific research as a means of improving
the lives of those afflicted with cutaneous lymphoma.
The inspirational tag line of the Cutaneous Lymphoma
Foundation’s Cutaneous Lymphoma Summit held in New
York in 2009, “community, cooperation, cure”, brought
into focus the great potential and need for interdisciplinary
research. A unique aspect of the research agenda of skin-based
lymphomas is that it connects the worlds of dermatology and
oncology. There are many aspects of cutaneous lymphomas
that affect the skin, such as itching and infections, which are
not found in other types of cancer. These dermatology-related
issues of cutaneous lymphoma are important and relevant in
the areas of skin and cancer research. One of the advocacy
priorities of the Cutaneous Lymphoma Foundation is to bring
awareness of this issue and advocate a broader view regarding
the eligibility of cutaneous lymphoma grant applications within
and National Institutes of Health.
A vital part of the Cutaneous Lymphoma Foundation’s
mission has been facilitating and funding research. During
the period of 2005-2008, the Foundation funded a series of
investigator-initiated research projects focused on cutaneous
lymphoma.
Earlier this year, the Foundation established a new Research
Awards Program, the first dedicated exclusively to funding
cutaneous lymphoma research. It is a five-year program that
will award up to two $25,000 grants per year that promotes
interdisciplinary research and supports investigators interested
in conducting innovative research designed to investigate the
causes of cutaneous lymphomas, improve clinical care and the
quality of life for patients. The Research Awards Program is
set to launch in 2013.
The Research Awards Program along with our advocacy
agenda will undoubtedly help leverage more resources for
cutaneous lymphoma research. The Cutaneous Lymphoma
Foundation is committed to growing cutaneous lymphoma
research and its efforts represent a vote of confidence for
science.
From the President
Stuart R. Lessin, M.D.
Susan Thornton
