Cutaneous Lymphoma Foundation
2012-2013 Annual Report
Director of Development and Marketing
Farmington Hills, MI
Chief Operating and Financial Officer
Chief Executive Officer
Deb Van Zegeren
Administrative and Communications Manager
Table of Contents
Stuart Lessin, M.D.
Marianne Tawa, MSN, RN, ANP
London, UK /West Barnstable, MA
Chevy Chase, MD
Far Hills, NJ
Pierluigi Porcu, MD
Michael W. Young
2012-2013 Board of Directors
3 Letter From the President of the Board and the
Chief Executive Officer
Living With Cutaneous Lymphoma:
4 A Patient’s Story
5 A Caregiver’s Story
6 Year in Review
9 Donor Honor Roll
15 Looking Ahead
The mission of the Cutaneous Lymphoma Foundation is to support
every person with cutaneous lymphoma by promoting awareness and
education, advancing patient care, and facilitating research.
We exist to make sure that each person with cutaneous lymphoma gets
the best care possible.
What is Cutaneous Lymphoma?
Cutaneous lymphomas are cancers of lymphocytes (white blood cells)
that primarily involve the skin. Classification is based upon lymphocyte
type: B-lymphocytes (B-cell) or T-lymphocytes (T-cell).
Cutaneous T-cell lymphoma (CTCL) is the most common type of
cutaneous lymphoma that typically presents with red, scaly patches
or thickened plaques of skin that often mimic eczema or chronic
dermatitis. Progression from limited skin involvement is variable and
may be accompanied by tumor formation, ulceration, and exfoliation,
complicated by itching and infections. Advanced stages are defined by
involvement of lymph nodes, peripheral blood, and internal organs.
Cutaneous lymphomas affect thousands of individuals worldwide.
CTCL affects over 30,000 people in the United States and Canada.
The incidence of cutaneous T-cell lymphoma in the United States
is increasing with approximately 3,000 new cases being diagnosed
annually. Due to the difficulty of diagnosing the disease in its early
stages and the current lack of an accurate reporting system, prevalence
of cutaneous lymphoma is thought to be much higher.
Letter from the President of the Board and the Chief Executive Officer
Much has changed since the early days of the Cutaneous
Lymphoma Foundation when Judy Jones launched a fledgling
organization to support patients living with cutaneous lymphoma.
Technology now allows us to reach more of you through our
website and provide more live programs, not only in the United
States, but in Canada and abroad. Collaborations with physicians,
researchers, and other patient advocate organizations have
expanded. Opportunities to raise a collective voice on behalf of
cutaneous lymphoma patients and their families in Washington, DC
with legislators and regulatory agencies like the FDA and Office
of Rare Diseases have helped get the word out about challenges
people living with this disease face each day.
What hasn’t changed is our core mission - a deep and strong
commitment to serving the needs of each person living with
cutaneous lymphoma and their loved ones.
We were reminded of the fragility of many in our community when
we lost a dear friend in January, 2013. CLF board member and
strong patient advocate, Tom Frank lost his battle with cutaneous
lymphoma, succumbing to infection after undergoing a stem cell
transplant. Tom was passionate and vocal about how he felt the
Foundation could move forward to accomplish its mission. Inspired
by his courage and commitment, we will keep Tom’s passion alive
by challenging the status quo and finding new ways to support
each and every person living with this disease.
The CLARIONS Research Grant Program is one new way we
are providing support to the cutaneous lymphoma community. It
was the goal of the CLF Board, led by Drs. Pierluigi Porcu and
Stuart Lessin, to create a structure that would provide long-term
sustainability for a research program. After extensive thought
and planning, the CLARIONS program was launched in January
2013. An announcement opening the proposal period was made to
clinical and research communities worldwide in late January. By
the end of August, 23 high-quality applications were received from
around the world. This is a big step for the CLF and we have plans
to expand and enhance the CLARIONS program going forward.
We also added a new 2-day program to our live event agenda.
The inaugural 2-Day Patient Conference was held outside of
Philadelphia in late June. The two days were filled with expert
clinical and health/wellness presentations. Hot topics such as
integrative medicine, nutrition and navigating the healthcare
insurance system were so popular, people didn’t want to leave the
sessions. The 2-day event provided an opportunity for everyone
to interact and share personal experiences, connect one-to-one
with the presenters and make lasting personal connections. Our
first ever silent auction and cocktail reception on Saturday was
an opportunity to mingle socially and engage in friendly bidding
wars for fabulous auction items ranging from vacation rentals
to beautiful photographs. Many of the items were donated by
cutaneous lymphoma patients or family members, some being their
own wonderful art work. There is quite the depth of talent among
our constituents and supporters!
Behind the scenes operationally, we made significant investments
of time and money to upgrade our technology infrastructure. These
changes will help the staff work more efficiently. Additionally we
updated our website to improve navigation and to handle video
presentations. Thanks to the tireless work of the CLF team for their
efforts to get everything up and running in addition to getting their
“normal” work done. We are also thankful to have a dedicated
Board of Directors who give tirelessly of their time by lending
their expertise, wisdom and vision.
Serving patients and their families is impossible without the
continued support of individuals, corporate partners, our staff and
Board of Directors. Through this generosity, the Foundation is able
to help and support so many who are struggling with cutaneous
lymphoma and continue to expand our programs and impact
worldwide. Our corporate partners know the importance of their
products to the quality of life for so many individuals diagnosed
with cutaneous lymphoma. Their support helps us increase
awareness and make information readily available so people can
make knowledgeable and informed care decisions. So, on behalf
of all of us at the Foundation and those we serve, we thank you for
your unwaivering support.
What began as one woman’s vision, today is an organization that
serves and supports thousands of
people around the globe suffering
from cutaneous lymphoma. We know
that there is always an individual
behind the disease who looks to
the CLF to provide support, sound
information and hope. Through
continued focus on each person,
their challenges and triumphs, we
are committed to expanding and
evolving, until one day there is a cure
and that each person can live a full
life beyond a diagnosis of cutaneous
We are grateful to everyone in our
community for helping us move closer
to this goal.
TOGETHER WE MAKE A
Stuart Lessin, M.D.
Chief Executive Officer
Making sure each person with cutaneous lymphoma gets the best care possible.