Why Young People Should Be Educated About Lymphoma: A Discussion with the Lymphoma Research Foundation

With millions of people diagnosed each year, you may know or know someone who has been diagnosed with cancer.

According to the Centers for Disease Control and Prevention, cancer is responsible for the second highest number of deaths in the United States. (Source: United States Mortality, 2020, data table in Figure 4)

Cancer is a disease in which malignant cells spread to abnormal growth, which can have devastating consequences for people’s health. Of the many types of cancer, 1 in 5 cancer diagnoses in young people is lymphoma.

Why You Should Care

As difficult as the subject is, because lymphoma is a very common cancer in adolescents and young adults, it is important that we know exactly what it is.

Teen Magazine had the opportunity to interview the CEO of the Lymphoma Research Foundation, Meghan Gutierrez, to better inform young people about this form of blood cancer.

The Lymphoma Research Foundation is the nation’s largest nonprofit organization dedicated to funding lymphoma research and education, advancing both the study of new cancer therapies and improving care to patients.

-Lymphoma Research Foundation

Could you tell us what exactly lymphoma is and the difference between the three major categories of cancers that affect lymphocytes: Hodgkin’s lymphoma (HL), non-Hodgkin’s lymphoma and chronic lymphocytic leukemia (CLL)?

Lymphoma is the most common type of blood cancer. Specifically, lymphoma is a cancer that affects lymphocytes, which are a type of white blood cells. The three main categories of cancers that affect lymphocytes are Hodgkin’s lymphoma (HL), non-Hodgkin’s lymphoma (NHL), and chronic lymphocytic leukemia/small lymphocyte lymphoma (CLL/SLL).

LLC/SLL is the same disease with slightly different manifestations, determined by where the cancer cells congregate. Approximately 19,000 people are diagnosed with CLL/LLS in the United States each year.

HL is an uncommon type of cancer that affects the lymphatic system, usually found in the lymph nodes, and is characterized by the presence of very large cells called Reed-Sternberg (RS) cells. Approximately 9,000 people are diagnosed with LH in the United States each year.

NHL is not a single disease, but rather a group of several closely related cancers called lymphoid neoplasms. Like HL, NHL is a type of cancer that affects the lymphatic system, usually found in the lymph nodes, but this classification of lymphoma does not involve Reed-Sternberg cells. There are over 90 types of NHL and it is the seventh most common cancer in adults in the United States.

What is the mission of the Lymphoma Research Foundation (LRF)?

The mission of the Lymphoma Research Foundation (LRF) is to eradicate lymphoma and serve those affected by this disease.

Through lymphoma-specific research grants and consortia, LRF seeks to better understand the more than 100 lymphoma subtypes and support the development of new treatments. LRF’s focus on supporting early career scientists ensures that the best and the brightest stay in the field of lymphoma research so that innovation and progress continue. Simultaneously, LRF works tirelessly to help patients, survivors, caregivers and families understand their diagnosis and ensure they have access to the support and resources they need.

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When was the LRF created and why?

LRF was formed in 1995 by Barbara and Jerry Freundlich. During their own journey with non-Hodgkin’s lymphoma, they recognized the need for a lymphoma-specific organization that could provide increased funding for lymphoma research and support for other families affected by lymphoma.

It was then that LRF’s Scientific Advisory Board (SAB) was also created to help guide LRF’s research agenda and offer expertise to inform LRF’s programming and patient resources.

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How is the LRF advancing lymphoma and chronic lymphocytic leukemia (CLL) research? What is the impact of this research on patients?

LRF funds the best science that holds the greatest potential for patient impact and ensures that the best and brightest researchers stay in the field. We are committed to funding the most promising lymphoma researchers and advancing the understanding of more than 100 different lymphoma subtypes. The disease specificity of LRF and its hyper-focus on finding cures for each type of lymphoma ensures that the next generation of cancer researchers dedicate their careers to the study of lymphoma, and that global lymphoma experts collaborate and accelerate the pace of scientific discovery.

To date, LRF has funded nearly $67 million in lymphoma-specific research, leading to a better understanding of lymphoma and increasing treatment options for patients.

What are some of the resources that LRF provides to people affected by lymphoma/CLL and their loved ones?

LRF is committed to giving patients and their loved ones the support and knowledge they need to make informed decisions about their care. The Foundation’s wide range of support services, educational programs and free publications ensure that people with lymphoma and their loved ones feel supported every step of the way.

Our educational programs, including our Ask the Doctor About Lymphoma program, Lymphoma Workshops, Webinars, and National Lymphoma Education Forum provide the lymphoma community with the opportunity to learn more about lymphoma and to have their questions answered by some of the world’s leading lymphoma experts.

Recognizing that people learn in different ways, LRF also offers a range of other educational tools to learn more about lymphoma, including disease-specific learning centers, our first YouTube video series, Focus mobile app on Lymphoma and the Living with Lymphoma podcast. In addition, LRF offers free publications on current disease information, treatment options, and the latest lymphoma research. Finally, our professionally trained helpline staff are available to answer questions about a lymphoma diagnosis and treatment information, as well as provide one-on-one support and referrals to you and your loved ones.

How does LRF raise public awareness?

LRF believes that education and advocacy are essential in our efforts to increase public understanding of this disease, increase federal investment in lymphoma research, and improve patient outcomes. LRF raises awareness through initiatives throughout the year, including its Blood Cancer Awareness Month (BCAM) trademarked initiative, Light it Red for Lymphoma.

Additionally, LRF recognizes that engaging in advocacy is essential to raising awareness about lymphoma. LRF has a network of over 5,000 advocates who want to make sure the voice of the lymphoma community is heard and help advance the Foundation’s mission.

In an effort to better serve the adolescent and young adult (AYA) population, LRF has developed the Erase Lymphoma program which aims to help young lymphoma patients meet their unique needs and challenges.

Can you tell more about this program and why it is essential for the adolescent and young adult (AYA) community?

In 2014, LRF developed a new initiative aimed at bringing attention to the needs of the AYA lymphoma population by educating the public about the disease’s impact on young people and providing free education, resources and programs. that meet the unique needs of AYAs. who are diagnosed with lymphoma.

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As a magazine focused on teens and young adults, are there ways for the teen and young adult (AYA) community to get involved with LRF?

Absolutely! LRF’s community fundraising program, Team LRF, enables patients, survivors, caregivers and friends of the lymphoma community to raise vital funds and awareness for the Foundation through its Lymphoma Walks, Research Ride and Fundraise Your Way. Several high school students and university groups have chosen to organize fundraisers in support of the Foundation, which helps us continue to fund the most innovative research and support lymphoma patients, survivors and their loved ones when they need it most. Whether someone joins as a volunteer, makes a donation, or participates in a fundraising event, they will be part of a community that is focused on finding cures for lymphoma.

For more information on how to support the Foundation, visit lymphoma.org/waystohelp.

What do you think is LRF’s greatest achievement?

Unquestionably, funding vital cancer research is the Foundation’s greatest achievement. Every day, this research brings us closer to our goal of eradicating lymphoma forever.

What makes you proud to lead this organization?

I am proud and incredibly grateful to be part of this organization and a community of people who care passionately about the LRF mission. With their support, I know we will find a cure for lymphoma.

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A huge thank you to Ms. Meghan Gutierrez and the Lymphoma Research Foundation for their educational and inspiring words!

For more information about the Lymphoma Research Foundation and to learn more about lymphoma, visit their website at lymphoma.org.

To keep up to date with the Lymphoma Research Foundation on social media, follow their Instagram at @lymphomacommunity, Twitter at @lymphomaand YouTube to @Lymphoma Research Foundation.