In Big Advance for Patients, Cancer Support Community Adds Digital Nonprofit MyLifeLine to Its Network

As research shows more consumers are searching online for health information, this union will deliver innovative digital services for cancer patients

The Cancer Support Community (CSC), an international nonprofit organization, announced today that MyLifeLine, a foundation whose digital platform has been engaged in transforming the experience of cancer patients over the past decade, will join CSC to bring together more than 30,000 patients, survivors, and loved ones in search of connection and community.

The addition of Denver-based MyLifeLine adds to the global network of 196 service locations, including 47 CSC and Gilda's Club affiliates, partnerships with hospitals, and educational resources that touch one million people each year. CSC's role as the leading voice for patients also includes in-depth research and policy advocacy.

"Together, we will build on our shared mission to ensure that no one faces cancer alone, and we will do so in an innovative, groundbreaking way," said Kim Thiboldeaux, CEO of CSC. "We will transform the way individuals whose lives are disrupted by cancer get information and build a community of friends and family to help them through this experience. We will also increase the patient's voice in policy debates and form new partnerships with corporations, foundations, and other organizations."

Marcia Donziger, a cancer survivor whose personal experience and that of her friends inspired the creation of MyLifeLine 10 years ago, will join CSC as Vice President, Digital Strategy and Business Development.

"I believe this collaboration is a major victory for people impacted by cancer. As a cancer survivor, I know firsthand the stress, anxiety and isolation that cancer inflicts upon patients and their families," Donziger said. "MyLifeLine was created as a gift for all patients diagnosed after me. I wish I had a tool like MyLifeLine to help me coordinate the care and support I needed. The Cancer Support Community elevates the MyLifeLine community in a meaningful way by integrating their award-winning cancer education materials and personalizing the resources based on everyone's unique situation. This new endeavor is a dream come true for me as I have admired the work of Cancer Support Community for decades."

Thiboldeaux and Donziger said they are committed to a seamless transition that engages the individuals and groups that rely on both organizations' services.

Jan. 30, 2018 —Today, the Cancer Support Community and MyLifeLine are announcing a major step forward for cancer patients.

MyLifeLine will become part of the CSC family to create an even more dynamic and innovative support network for patients and their loved ones.

Together, we will build on our global network of CSC and Gilda’s Clubs affiliates, partnerships with hospitals, 196 locations where services are available, and educational resources that touch one million people each year.

MyLifeLine’s digital platform, which has been engaged in transforming the experience of cancer patients for the past decade, brings to CSC more than 30,000 patients, survivors, and loved ones in search of support and community.

As research shows that more and more consumers are turning to online resources for health information, this alliance positions us to deliver expanded digital services in an innovative, groundbreaking way.

In addition to marking a milestone for the delivery of resources and psychosocial support, this combination of educational content and digital resources enables us to do even more to advance our shared mission. We can increase the patient’s voice in policy debates and form partnerships with new companies and organizations that want to help patients living with a cancer diagnosis.

As we embark on this new endeavor, we are also committed to ensuring a smooth transition that engages the individuals and groups that rely on both resources—and have established one-stop shops on both websites to help answer questions and provide updates.

In fact, Marcia Donziger, a cancer survivor whose personal experience and those of her friends inspired the creation of MyLifeLine 10 years ago, will join the Cancer Support Community as Vice President, Digital Strategy and Business Development.

We are so thrilled to share this news and look forward to sharing with you the new advances that will help ensure no one faces cancer alone.

Kim Thiboldeaux

CEO, Cancer Support Community

Marcia Donziger

Founder, MyLifeLine

Frequently Asked Questions

What is MyLifeLine?

MyLifeLine believes a strong support community is critical to healing. The mission is to empower cancer patients and caregivers to build an online support community of family and friends to foster connection, inspiration, and healing through free, personalized websites. MyLifeLine benefits include helping each patient take back control while receiving social, emotional and practical care from loved ones to ease their daily burdens.

Why is MyLifeLine becoming part of CSC?

MyLifeLine is becoming part of CSC to create a more dynamic and innovative support network for cancer patients and their loved ones online and at brick-and-mortar locations. We believe our merger is a 1+1 = 3 equation and a major step forward for cancer patients.

What will the organization be named?

Cancer Support Community is the name of the organization. MyLifeLine is the name of the online community platform where patients connect with their own friends and family for support.

How will the new organization function in comparison to CSC and Gilda’s Clubs affiliates?

MyLifeLine is not an affiliate. It is a digital patient-centric community platform now offered by CSC for affiliates to leverage and grow their networks. Affiliates will be able to offer MyLifeLine to patients and caregivers as a solution that will ease these families’ daily burdens while giving an additional sense of hope, optimism and meaning to the experience of cancer.

How will MyLifeLine users learn about the affiliate network?

The 30,000+ active patients, caregivers, friends and family currently using MyLifeLine will now see a promotion of the CSC network affiliate map on every patient community site. Our longer-term development plans include figuring out how to recommend specific affiliates by the zip code each patient or caregiver identifies as their own. When a patient signs up to use MyLifeLine to ease the communication burden with family and friends, we will customize each patient community site with a link to their local affiliate’s events and programs.

Questions for MyLifeLine Members

Will you still provide the services I use?

Yes, the same service will continue to be provided.

Will the services still be free?

Yes.

As a MyLifeLine member, will my personal data still be protected?

Yes, your personal data will be protected. We will not sell or share your information with outside groups.

What changes could I see?

CSC’s logo and a link to its resources will be on every page. We encourage you to discover the many wonderful resources now available through CSC. They also have an Affiliate Network. Make sure to check if there is a local affiliate in your area, so you can access a variety of in-person support programs. Over the next few months, we will be integrating CSC’s education, information and resources in a customized way to your personal community page. Our longer-term goal is to build the gold-standard customizable platform for you to build your community. We will be offering the right resources for your unique situation at the right time. We will also be asking for your feedback along the way!

If I have made donations to MyLifeLine, will my contribution continue to be used to strengthen it?

Yes. MyLifeLine and CSC will pool resources to create a more dynamic and innovative support network for cancer patients and their loved ones online and at brick-and-mortar locations. We believe this is a major step forward for cancer patients, and we would not have made it to this point without the generosity of supporters like you.

Brian d'Arcy James Runs Chicago Marathon in Honor of His Father and Cousin to Benefit the Cancer Support Community. Go TEAM TOM!

WASHINGTON, DC — Brian d'Arcy James of Netflix’s series 13 Reasons Why, Academy Award-winning film Spotlight, and Tony Award-winning Broadway hit Hamilton is set to take on the 26.2-mile-long challenge of the 2017 Bank of America Chicago Marathon on October 8th and raise money to support cancer patients and their loved ones served by the Cancer Support Community.

“Like most everyone, my life is touched by cancer. My father Tom James died of cancer at age 50 and my cousin Tom is currently fighting cancer,” said James. “This is why my brother Andrew and I are running the Chicago Marathon under the banner of TEAM TOM to benefit the Cancer Support Community. What makes CSC so wonderful to me is the wide approach they take to not only support patients who are dealing with diagnoses, but also the friends and family around them who are as well.”

“We were very heartened when Brian and Andrew reached out and said they want to run the Chicago Marathon to benefit the Cancer Support Community in honor of their father and cousin,” said Kim Thiboldeaux, CEO of CSC. “We wish Brian and Andrew the best of luck and we will loudly cheer on TEAM TOM on race day!”

In 2012, James performed at CSC’s annual Spring Celebration Gala in New York City at which quintessential American fashion designer Carmen Marc Valvo was honored. In supporting CSC, James joins a prominent group that includes Tony winner LaChanze, Daytime Emmy nominee Katherine Kelly Lang, former WBA middleweight boxing champion Daniel Jacobs, Orange Is the New Black actress Alysia Reiner, David Alan Basche of TV Land's The Exes, and Broadway’s Golden Couple Marin Mazzie and Jason Danieley.

This year is the 40th anniversary of the Chicago Marathon. Chicago is one of the biggest marathons in the world attracting tens of thousands of runners to the race to raise money for different charities. The race is on Sunday, October 8, 2017.

All funds raised will benefit the Cancer Support Community.

DONATE TO TEAM TOM

About Brian d’Arcy James

Brian d’Arcy James was awarded the 2016 SAG Award, Critics Choice Award, Gotham Award and the Independent Spirit’s Robert Altman Award for Best Ensemble, for his portrayal of “Matt Carroll” in the 2016 Best Picture Oscar®-winning film Spotlight starring opposite Michael Keaton, Mark Ruffalo, and Rachel McAdams.

James is a celebrated stage actor who has received three Tony nominations for his work on Broadway in the hit musical “Something Rotten,” “Shrek the Musical,” and “Sweet Smell of Success.” In 2015, he originated the role of King George in Lin-Manuel Miranda’s “Hamilton” off-Broadway and was honored to reprise it on Broadway this summer.

His upcoming film projects include: MARK FELT: The Man Who Took Down The White House, with Liam Neeson (September); Aaron Sorkin’s directorial debut, Molly’s Game, opposite Idris Elba and Jessica Chastain (November); Stephen King’s 1922, directed by Zak Hilditch; Song of Back and Neck, directed by Paul Lieberstein; Theresa Rebeck’s Trouble, starring Anjelica Huston; and Danny Strong’s JD Salinger biopic Rebel in the Rye, starring Nicholas Hoult and Kevin Spacey.

In Toronto, Brian was honored by the Creative Coalition for his work in film, presented by Molly’ Game director Aaron Sorkin.

On television, James co-stars as Henry Baker in the hit Netflix series “13 Reasons Why.” Other credits include ‘Manhunt: Unabomber,” “The Big C,” and “Smash.”

As a concert artist, James has performed worldwide at venues that included The White House, Madison Square Garden, and Carnegie Hall.

WASHINGTON, DC (Aug 04, 2017)— The Cancer Support Community (CSC), an international nonprofit, today announced the results of its study from the Cancer Experience Registry of cancer caregivers at the 2017 American Psychological Association Annual Convention.

Findings show that among other things, cancer caregivers experienced substantial anxiety (48 percent of respondents) and elevated fatigue (37 percent). Additionally, the top needs expressed by caregivers include:

• 72 percent wanted better understanding of the patient’s medical condition, treatment, and prognosis
• 62 percent wanted to learn how to manage personal stress
• 62 percent lacked information about available financial resources
• 54 percent desired guidance on how to navigate the health care system

Also of note, caregivers experiencing more unmet needs were people who reported less knowledge about the patient’s cancer. They felt less prepared to provide and coordinate care, and they experienced greater burden.

“The emotional and physical health of cancer caregivers are seldom monitored, so caregivers tend to fall through the cracks,” said Alexandra Zaleta, Ph.D., Senior Director of Research at CSC. “Early recognition of distress and appropriate intervention are imperative for the well-being of the caregiver and long-term care of patients.”

“My mother’s diagnosis of metastatic breast cancer was an overwhelming and confusing experience,” said Anabella Aspiras, RN, MPA, Senior Director of Strategic Initiatives at CSC, and a former caregiver. “I was fortunate enough to benefit from the free services and programming for caregivers provided by my local CSC affiliate, which gave me hope and helped me to stay positive.”

149 caregivers took part in this study. They are a part of CSC’s Cancer Experience Registry that includes over 12,000 patients and caregivers of 45 cancer types.

See full poster presented at the 2017 American Psychological Association Annual Convention.

DENVER – (July 13, 2018) – The Cancer Support Community (CSC), a global nonprofit, announced today a new partnership with Rocky Mountain Cancer Centers (RMCC) that will enable Colorado’s largest and most comprehensive provider of cancer care to expand its supportive care for patients and caregivers.

Built on CSC’s national program model, thanks to the generous financial support of the Barbara Bradley Baekgaard Family Foundation, this agreement will make services available across RMCC’s 13 primary clinic locations with CSC satellite hubs being established at RMCC’s clinics in Lone Tree and in Colorado Springs. Now, anyone throughout Colorado impacted by cancer will have access to CSC’s comprehensive, scientifically validated psychosocial support programs, including professionally facilitated support groups, education, social connections, healthy lifestyle classes, and other resources.

CSC and RMCC leaders made the announcement at the Colorado State Capitol where Lt. Gov. Donna Lynne read a proclamation commemorating Colorado Cancer Caregivers Day. The proclamation recognizes those who provide essential support during a patient’s diagnosis.

“Bringing the Cancer Support Community to the Colorado community builds upon our vision to lead the way in cancer care. We believe that the CSC and RMCC collaboration tightly aligns with our shared values: minimizing the impact of illness and expanding the meaning of life for patients and their loved ones,” said Susan Ash-Lee, Director, Supportive Care, RMCC.

“Today marks a major step forward for cancer patients and caregivers in Colorado. We are honored to work with RMCC to provide free supportive resources that will help patients gain a sense of control at a time when a medical diagnosis can make life seem so chaotic,” said Kim Thiboldeaux, CEO of CSC.

The announcement marks another milestone for CSC in Colorado. In January, the Denver-based MyLifeLine.org Foundation, a unique web-based communication platform that connects cancer patients and caregivers to their community of family and friends, became part of CSC, and Denver is now the global nonprofit’s digital hub.

The ceremony at the Capitol also featured two caregivers, Jen and Britton Thomas, whose story helped inspire the proclamation. Jen and Britton each utilized the free services provided through MyLifeLine and relied heavily on its care coordinator features to ease the daily burdens while navigating their spouses’ cancer journeys. In addition, Britton’s wife received treatment at the RMCC.

Unfortunately, their spouses each passed away too young. Years later, Jen and Britton met serendipitously through MyLifeLine and bonded over shared caregiving experiences. In time, they fell in love and got married to begin a new life together and they now have a baby daughter, Ashlyn, who turned one on June 17.

“We share our story so that other families facing a cancer diagnosis know that you do not have to endure this experience alone,” said Britton and Jen Thomas. “So many parts of our story—from MyLifeLine to RMCC are connected through CSC, which means enhanced services for patients and caregivers.”

Atlanta, Georgia - The Cancer Support Community (CSC) announced today at the 2017 ASH (American Society of Hematology) Annual Meeting and Exposition the results of a study of chronic lymphocytic leukemia (CLL) survivors as part of its Cancer Experience Registry. The study explores how CLL affects daily life, finances and relationships. It also examines the association between quality of life and CLL course of treatment.

“This study is an important first step into understanding the challenges and concerns specific to CLL patients and the psychosocial consequences of being diagnosed with CLL,” said Linda House, CSC president.

Well over half of respondents (62 percent) indicated that CLL “somewhat to very much” affected their views on life expectancy. Also noted were concerns about quality of life (41 percent), finances (40 percent), ability to work (34 percent), and relationships with friends and family (26 percent).

Over one-fifth (21percent) of CLL survivors reported experiencing substantial levels of anxiety and fatigue as compared to the general US population. Of note, worse anxiety was significantly associated with active treatment, whether it was the first line of therapy or subsequent therapy, even after controlling for the effects of age, gender, education, and income. Interestingly, poorer quality of life outcomes were not related to being in active surveillance (“watch and wait”) treatment.

“These findings highlight the importance of examining changes in quality of life and distress throughout the cancer experience and that psychosocial services, like those offered through CSC, play a vital role in supporting patients and survivors who have these symptoms and concerns,” said Alexandra Zaleta, PhD, CSC Senior Director of Research.

The poster will be formally presented on Saturday, December 9 from 5:30 to 7:30 p.m. at the ASH (American Society of Hematology) Annual Meeting and Exposition. The full poster as presented at the Meeting is available online here.

As research shows more consumers are searching online for health information, this union will deliver innovative digital services for cancer patients.

[Washington, D.C.] – The Cancer Support Community (CSC), an international nonprofit organization, announced today that MyLifeLine, a foundation whose digital platform has been engaged in transforming the experience of cancer patients over the past decade, will join CSC to bring together more than 30,000 patients, survivors, and loved ones in search of connection and community.

The addition of Denver-based MyLifeLine adds to the global network of 190 service locations, including 47 CSC and Gilda's Club affiliates, partnerships with hospitals, and educational resources that touch one million people each year. CSC's role as the leading voice for patients also includes in-depth research and policy advocacy.

"Together, we will build on our shared mission to ensure that no one faces cancer alone, and we will do so in an innovative, groundbreaking way," said Kim Thiboldeaux, CEO of CSC. "We will transform the way individuals whose lives are disrupted by cancer get information and build a community of friends and family to help them through this experience. We will also increase the patient's voice in policy debates and form new partnerships with corporations, foundations, and other organizations."

Marcia Donziger, a cancer survivor whose personal experience and that of her friends inspired the creation of MyLifeLine 10 years ago, will join CSC as Vice President, Digital Strategy and Business Development.

"I believe this collaboration is a major victory for people impacted by cancer. As a cancer survivor, I know firsthand the stress, anxiety and isolation that cancer inflicts upon patients and their families," Donziger said. "MyLifeLine was created as a gift for all patients diagnosed after me. I wish I had a tool like MyLifeLine to help me coordinate the care and support I needed. The Cancer Support Community elevates the MyLifeLine community in a meaningful way by integrating their award-winning cancer education materials and personalizing the resources based on everyone's unique situation. This new endeavor is a dream come true for me as I have admired the work of Cancer Support Community for decades."

Thiboldeaux and Donziger said they are committed to a seamless transition that engages the individuals and groups that rely on both organizations' services. For more information.

WASHINGTON – (Jan 30, 2019) –The Cancer Support Community (CSC), a global nonprofit, is launching a unique research study focused on individuals diagnosed with Acute Myeloid Leukemia (AML), a cancer of the blood and bone marrow which accounts for approximately 19,520 new cases of cancer each year (American Cancer Society, 2018).

“AML is a serious diagnosis and patients require immediate and intensive treatment. Because of the acute nature of the disease, there is much to be learned about the patient and caregiver experience with AML,” said Linda House, president of the Cancer Support Community, whose Philadelphia-based Research and Training Institute will oversee the study. “This new study gives us the opportunity to learn more from patients about the full spectrum of their experience and allows us to address their concerns through our support services, educational materials, and by informing public policy.”

The Cancer Experience Registry: AML will explore the patient experience on several different topics, such as, their physical functioning, social life, work, stress, financial impact, treatment decision-making, and more. After completing the survey, participants will be connected to support and resources that meet their unique needs and have the option to receive additional information from CSC and its partners.

The Cancer Experience Registry: AML was created thanks to support from inaugural sponsors, Astellas Pharma Inc. and Jazz Pharmaceuticals. First launched in 2013, The Cancer Experience Registry has captured important information about the physical, social, and emotional health from more than 13,000 patients, survivors, and caregivers. The Cancer Experience Registry: AML is the 11th in a series of specialty registries hosted by CSC.

“We are proud to work with CSC to create an important resource to help AML patients and their loved ones navigate the physical and emotional challenges of this rapidly progressing and life-threatening blood cancer,” said Steven Benner, M.D., senior vice president and global therapeutic area head, Oncology Development, Astellas. “By generating actionable data to inform programming and scientific discourse, we believe this registry may help contribute to creating a brighter future for AML patients.”

“At Jazz, our passion for addressing patients’ unmet needs drives our day-to-day activities and fuels our commitment to raising awareness about conditions like AML,” said Allen Yang, M.D., Ph.D., vice president and acting chief medical officer of Jazz Pharmaceuticals. “We are pleased to support this ground-breaking hematology initiative and we thank the patients and caregivers for their willingness to share their experiences with AML.”

About Astellas

Astellas Pharma Inc., based in Tokyo, Japan, is a company dedicated to improving the health of people around the world through the provision of innovative and reliable pharmaceutical products. For more information, please visit our website at www.astellas.com.

About Jazz

Jazz Pharmaceuticals plc (Nasdaq: JAZZ), a global biopharmaceutical company, is dedicated to developing life-changing medicines for people with limited or no options, so they can live their lives more fully and redefine what is possible. As a leader in sleep medicine and with a growing hematology/oncology portfolio, Jazz has a diverse portfolio of products and product candidates in development, and is focused on transforming biopharmaceutical discoveries into novel medicines. Jazz Pharmaceuticals markets Xyrem® (sodium oxybate) oral solution, Erwinaze®(asparaginase Erwinia chrysanthemi), Defitelio® (defibrotide sodium) and Vyxeos® (daunorubicin and cytarabine) liposome for injection in the U.S. and markets Erwinase®, Defitelio® (defibrotide) and Vyxeos® 44 mg/100 mg powder for concentrate for solution for infusion in countries outside the U.S. For country-specific product information, please visit www.jazzpharmaceuticals.com/medicines. For more information, please visit www.jazzpharmaceuticals.com and follow us on Twitter at @JazzPharma.

NEW YORK– (June 26, 2017) – The Biden Cancer Initiative today announced Kim Thiboldeaux, CEO of the Cancer Support Community (CSC), along with other national leaders in the cancer field, has been selected to serve on the Initiative’s Board of Directors.

In his final State of the Union address in January 2016, President Barack Obama tasked Vice President Joe Biden with leading the Cancer Moonshot, a national effort to dramatically accelerate progress toward cures and achieve ten years of progress in five. Through the Biden Cancer Initiative, Vice President Biden will continue his work to reimagine how the government, academia, non-profits, and private sector can better organize their resources and systems to collaborate to take on cancer.

“The Biden Cancer Initiative is honored to have Kim join our board. As head of the largest professionally-led nonprofit network of cancer support organizations worldwide, Kim has a wealth of knowledge about the true experiences of cancer patients and their loved ones. Understanding the cancer experience from the patient’s perspective is essential to improving care—and caring—for cancer patients. Her personal experiences will help us achieve the Biden Cancer Initiative’s goals; they remind us to never lose sight that our work is in the service of all people who have been diagnosed with this life-threatening disease,” said Greg Simon, President of the Biden Cancer Initiative.

“It is an honor and a privilege to be asked to serve on the Board of the Biden Cancer Initiative,” commented Thiboldeaux. “No one knows better the importance of this work than Vice President Biden. His leadership and passion, combined with his personal experience as a caregiver and a father who lost his son to cancer, makes him the perfect person to continue this vital work to end cancer as we know it.”

Thiboldeaux joined The Wellness Community in 2000 as President and CEO. In 2009, The Wellness Community and Gilda’s Club joined forces to become the CSC, where Thiboldeaux has maintained her role as CEO. Thiboldeaux helped CSC become one of the largest providers of social and emotional support worldwide, advancing the idea that psychosocial care is as important as medical care in the face of a cancer diagnosis. CSC provides social and emotional support through a network of more than 50 local affiliates, more than 100 satellite locations and online. The organization also maintains a Research & Training Institute in Philadelphia and a Cancer Policy Institute in Washington, D.C.

The study will examine care options, quality of life and other issues impacting patients

PHILADELPHIA, PA– (Sept. 9, 2019) –The Cancer Support Community (CSC), a global nonprofit, is expanding its innovative patient experience work by launching a new research study to capture the patient experience of those diagnosed with liver cancer.

“Liver cancer is a critical illness that often has unique challenges,” said Linda House, president of the Cancer Support Community, whose Philadelphia-based Research and Training Institute will oversee the study. “Because there is so little research around liver cancer, this new initiative will help us better understand how health care providers can solve the unmet needs of people living with liver cancer around topics like broad cancer care, quality of life, and managing other chronic diseases in addition to their cancer.”

The Cancer Experience Registry: Liver Cancer will explore the patient experience on several different topics such as their physical functioning, social life, work, stress, financial impact, treatment decision-making, and more. After completing the survey, participants will be connected to support and resources that meet their unique needs and have the option to receive additional information from CSC and its health care partners.

First launched in 2013, The Cancer Experience Registry has captured important information about the physical, social, and emotional health from more than 14,000 patients, survivors, and caregivers. The Cancer Experience Registry: Liver Cancer is the 13th in a series of specialty cancer registries hosted by CSC. It was created thanks to support from Genentech, a member of the Roche Group.

CSC is grateful for the work of The Bili Project Foundation, Blue Faery: The Adrienne Wilson Liver Cancer Association, and the Global Liver Institute, who have partnered to help with this project.

Patients and caregivers can access the registry and share their story by creating an account at https://www.cancerexperienceregistry.org/.