1 Presentation to the Centers for Disease Control and Prevention May 2008

Overview Organizational Background Project Goals Partnerships Evaluation Activities Memorable Moment/Highlight 2

ORGANIZATIONAL BACKGROUND Our mission is to eradicate lymphoma and serve those touched by this disease. 3

Organizational Background The Lymphoma Research Foundation (LRF) is the nation’s largest lymphoma-focused voluntary health organization devoted exclusively to funding lymphoma research and providing patients and healthcare professionals with critical information on the disease. Our mission is to eradicate lymphoma and serve those touched by this disease. 4

PATIENT PROGRAMS Our mission is to eradicate lymphoma and serve those touched by this disease. 5

Patient Services and Education Lymphoma Support Network Patient Aid Grants Lymphoma Helpline & Clinical Trials Information Service Informational Teleconferences and Webcasts In-person Conferences 6

Free Publications Booklets – Understanding Non-Hodgkin Lymphoma – Understanding Hodgkin Lymphoma Fact Sheets – Disease-specific – Treatment-specific – Multi-lingual Fact Sheets Newsletters – Lymphoma Today – Research in Focus 7

PROJECT GOALS Our mission is to eradicate lymphoma and serve those touched by this disease. 8

CDC Goals Goal 1: To increase awareness of and access to LRF’s lymphoma-specific education resources and patient support services for lymphoma patients, family members, friends and caregivers. Goal 2: To develop, test and disseminate new education resources for underserved lymphoma patients, family members, friends and caregivers for which no material currently exists. 9

Goal 1- Year 1 Activities Develop and disseminate promotional material – Aim: Promote LRF’s primary website ( and the Lymphoma Helpline and Clinical Trials Information Servicewww.lymphoma.org – Material Pens/Lanyards Notepads Promotional signage – Dissemination Healthcare providers Patients, survivors and loved ones Promote new booklets Increase awareness of existing patient education programs Ed Forum webcasting and CD recording “Transcreate” info into Spanish 10

Goal 2- Year 1 Activities Develop material for rare forms of lymphoma – Primary Central Nervous System Lymphoma – B-cell Cutaneous Lymphoma (in collaboration with the Cutaneous Lymphoma Foundation) – T-cell lymphomas Angioimmunoblastic Lymphoma HTLV-1 Adult T-cell leukemia/lymphoma Peripheral T-Cell Lymphoma Anaplastic Large Cell Lymphoma Young Adult Lymphoma Survivorship Program – Video podcasts Indolent lymphomas in their 20s and 30s Young adult care partners – Presentation at the Association of Oncology Social Worker 11

PARTNERSHIPS Our mission is to eradicate lymphoma and serve those touched by this disease. 12

Institution / Organization AIDS Organizations (2) American Brain Tumor Foundation Arizona Cancer Center Brain Tumor Society Cancer Care, Inc. Cancer Institute of New Jersey Candelighter’s Childhood Cancer Foundation Center for Immigrant Health Children’s Cancer Cause Comprehensive Cancer Controls Program Cutaneous Lymphoma Foundation Dana-Farber Cancer Institute Fred Hutchinson Cancer Research Center Gilda’s Club Hackensack University Medical Center International Waldenstrom’s Macroglobulinemia Foundation Lance Armstrong Foundation Mayo Clinic MD Anderson Cancer Center National Brain Tumor Foundation National Marrow Donor Program National Organization of Rare Diseases New York Presbyterian Hospital-Weill Cornell Medical College Gilda’s Club Hackensack University Medical Center International Waldenstrom’s Macroglobulinemia Foundation Lance Armstrong Foundation Mayo Clinic MD Anderson Cancer Center National Brain Tumor Foundation National Marrow Donor Program National Organization of Rare Diseases New York Presbyterian Hospital-Weill Cornell Medical College NIH- Office of Cancer Survivorship NIH- Office of Rare Diseases Other hospitals and community cancer centers Robert H. Lurie Comprehensive Cancer Center of Northwestern University Ulman Cancer Fund University of Minnesota Cancer Center University of Nebraska Medical Center NIH- Office of Cancer Survivorship NIH- Office of Rare Diseases Other hospitals and community cancer centers Robert H. Lurie Comprehensive Cancer Center of Northwestern University Ulman Cancer Fund University of Minnesota Cancer Center University of Nebraska Medical Center 13

EVALUATION Our mission is to eradicate lymphoma and serve those touched by this disease. 14

Evaluation Quantitative – Metrics from website, Helpline and webcasts – Metrics monitoring program attendance and people new to LRF (not previously in database) resulting from the placement of advertisements in local communities Qualitative – Young adult resources (committee and users) – Rare lymphomas- need for future disease types 15

MEMORABLE MOMENTS/HIGHLIGHTS Our mission is to eradicate lymphoma and serve those touched by this disease. 16

Memorable Moments Overall increase in attendance – Local (Ask the Doctor)- Up 53% from 2007 – Regional (Lymphoma Workshops)- Up 43% from 2007 – Teleconference- Most people ever on disease-specific calls (CTCL, Post- ASH) Becoming more age-appropriate – Switch from synchronized audio/slide webcasts for young adults – To much “cooler” video podcasts (3-5 minutes in length) 17

(800) Support ▪ Education ▪ Research ▪ Hope 18