The Leukemia & Lymphoma Society celebrates 70-year legacy by launching new LLS Children’s Initiative, to accelerate new and better treatments for pediatric blood cancers
As an organization founded by a family for families, The Leukemia & Lymphoma Society (LLS) is celebrating 70 years of impact on generations of families, researchers and volunteers while looking to the future by redoubling its commitment to improve treatments and care for children with cancer.
To accomplish its bold vision for children, LLS is launching The LLS Children’s Initiative to deliver cures and care for children by disrupting drug development for pediatric cancers and expanding the education and support the organization provides to children and their families.
Founded in 1949 by grieving parents after losing their 16-year-old son Robbie to leukemia, LLS is harnessing inspiration of the past to propel the organization forward in its quest to cure cancer. The LLS Children’s Initiative seeks to accelerate treatments with fewer harmful side effects, so young patients with cancer not only survive, but thrive, for generations to come.
“We are determined to change fundamentally how children with leukemias are treated,” said Gwen Nichols, M.D., LLS chief medical officer. “Children are not little adults and the ways that cancers behave in children, and how children respond to therapy are profoundly different. Further, development of new treatments for children with cancer has not kept pace with progress for adults. In fact, only four cancer therapies have been approved for first use in children over the past three decades. We must do better for children now.”
As a leading convener in the cancer arena, LLS is teaming up with industry, regulators, other advocacy organizations and major, renowned medical centers and researchers, to bring this effort to life. A vital voice the organization is bringing to the table is that of parents who have lost children to pediatric cancer. LLS has enlisted one of the most influential parent advocates in the pediatric cancer community, Julie Guillot, who lost her son Zach to one of the deadliest forms of blood cancer, acute myeloid leukemia (AML), when he was just nine years old. Guillot is working with LLS to generate alliances and support for a new master clinical trial using precision medicine for pediatric cancers, a key component of The LLS Children’s Initiative.
“It’s too late for my son Zach, who endured round after round of brutal chemotherapy treatments, radiation and bone marrow transplants over the four years he fought his AML,” said Guillot. “Ultimately the toxicity of the treatments was too much and he died at age nine. Losing Zach was unimaginably devastating to my family and me, but his struggle makes me all the more relentless about the urgency of speeding the development of better treatments. Working together we can save the lives of thousands of kids just like Zach.”
LLS is taking on children’s cancer from every direction, more than doubling its investment in pediatric cancer research, while expanding services to help children and families cope with the financial, emotional and psychological impacts of a cancer diagnosis. The organization continues to lead with innovative new clinical trial models that use next-generation genomic technologies, and plans to launch its global precision medicine master clinical trial in pediatric acute leukemia early next year.
“It will take an unprecedented collaboration to bring this global clinical trial to fruition and LLS has the track record and is the right organization to bring all the stakeholders together,” said Nichols. “Our successful Beat AML Master Clinical Trial for adults with AML, launched in 2016, shows we can get this done, and is a model we aim to replicate for children. Just like with Beat AML, LLS will be the sponsor of this trial, leveraging our unique position as a nonprofit organization who puts patients first to bring new and better therapies to patients, faster.”
Nichols added that LLS is currently setting the groundwork and convening industry leaders for this collaboration, including pediatric oncologists, the U.S. Food & Drug Administration, pharmaceutical companies, parent groups and other nonprofits to identify the underlying causes of acute myeloid leukemia (AML) in these children and find or develop the right therapies to treat their disease.
Beyond the Children’s Initiative, LLS is driving forward a strategic agenda focused on the most pressing priorities in the blood cancers:
Prevention and Survivorship – Advances in next-generation genomic sequencing are leading to the first-ever discussions about halting blood cancers earlier and initiating the first-ever discussions about blood cancer prevention.
Precision Medicine and Immunotherapy – LLS pioneered the precision medicine and immunotherapy revolution, and continues to lead with innovative new clinical trial models, bringing the promise of cancer cures to more patients and their families.
Myeloma – LLS is propelling meaningful treatment advancements while raising awareness of this disease, particularly in underserved populations, including African American communities, where prevalence is twice as high as among white Americans.
Beyond Blood Cancer – LLS-funded blood cancer research has led to game changing discoveries that are now benefiting patients with other cancers and diseases.
Financial Support and Cost of Care – More than 100,000 volunteer advocates join LLS’s Office of Public Policy in working to minimize the financial toxicity of cancer.
“We have remained true to our founders’ vision and their belief that leukemia and other blood cancers were indeed curable,” said Louis J. DeGennaro, Ph.D., LLS’s president and CEO. “Our 70th anniversary is an opportunity to not only reflect on the tremendous progress we have made in helping families fighting blood cancers, but to leverage our impact on generations of families, researchers and volunteers as we look to the future and work toward a world without these diseases.”
To recognize this milestone, LLS is inviting patients, caregivers, survivors, volunteers, healthcare professionals, researchers and others to join the Generation LLS storytelling initiative and inspire even more families.
Help grow the Generation LLS family tree to uplift all those touched and affected by blood cancer: www.lls.org/GenerationLLS. Upload a photo and share how you have been impacted by blood cancer or LLS's work, or what it means to be part of the generations fighting for cures. Share on your social channels using #GenerationLLS to encourage others to join you.
Julie Guillot lost her 9-year-old son, Zach, to acute myeloid leukemia (AML) in 2014. He was diagnosed in 2010 and received almost every therapy available for pediatric AML, but passed away following his third bone marrow transplant. Today, Julie is a volunteer working on LLS’s Children’s Initiative with the hope that other moms do not have to experience what she did. Watch video.
In 2015, Abby Breyfogle’s twin daughters, Kenedi and Kendal were diagnosed with acute myeloid leukemia (AML) at three months old. After enduring 17 months of intense treatment, Kendal died in September 2017. One week later, Kenedi celebrated two years in remission. The Breyfogle family continues to fight blood cancer in honor of Kendal. Watch video.
More than 400 women from diverse backgrounds in business, entertainment, fashion, media, healthcare, science and finance came together this week to inspire and encourage one another at the 2019 Forbes Women’s Summit at Pier 60 Chelsea Piers in New York City.
The attendees engaged in animated discussions about how women are changing the world while still fighting to overcome obstacles they face in the workforce and on the world stage.
The women heard from panels of entrepreneurs, pioneers, activists, celebrities and media personalities who shared their visions and personal experiences. The Leukemia & Lymphoma Society’s Chief Medical Officer Gwen Nichols, MD, spoke on a panel about innovation.
Nichols said to her innovation means identifying barriers and working collaboratively to find solutions to achieve a goal. She described how LLS’s innovation has led to new models of cancer clinical trials to tackle the most challenging diseases that have seen limited progress in treatments over the past few decades. She explained that, in particular, progress in developing new treatments for children with cancer has lagged far behind that of advancements for adults.
For this reason, she said, LLS has launched The LLS Children’s Initiative to bring cures and care to children with cancer. She drew rousing applause when she announced that LLS is planning to lead a new precision medicine clinical trial for children with leukemia.
Nichols said that as a nonprofit LLS can focus on innovation without having a financial stake in the outcome.
“We’ve been able to develop really innovative clinical trial models and our only gain is if the patient gets better,” Nichols said.
Nichols was joined on her panel by NASA Chief Flight Director Holly Ridings, Kate Ryder, founder and CEO of the virtual women's healthcare clinic Maven, and Anjali Sud, CEO of Vimeo.
Other panelists and moderators throughout the day included media personalities like CBS News Anchor Norah O’Donnell, MSNBC News Anchor Stephanie Ruhl, hard-hitting technology journalist Kara Swisher, actresses and entrepreneurs Jennifer Garner and Eva Longoria, fashion designer Tory Burch, equal-pay activist Lilly Ledbetter, leading talent attorney Nina Shaw and many others.
It was truly a day filled with tremendous energy, resolve, laughter and unity.
A cancer diagnosis is a devastating blow for people of all ages, but presents special challenges for young adults. This period of life is usually a time of transition as they are embarking on journeys such as school, relationships and careers. A cancer diagnosis can bring their lives to a screeching halt in the midst of these new adventures.
According to Abby-Gail Solomons, MSW, AAS Courtelis Center for Psychosocial Oncology UM Sylvester Comprehensive Cancer Center, “Young adults' needs are different because they're now in a unique area of their life. They're now transitioning into independence, trying to navigate work, trying to navigate school, peers, relationships, family life, so with this added layer of being diagnosed and going through treatment, it can become a lot for any young adult, and overwhelming. There's a lot of concerns and fears.”
In 2014, The Leukemia & Lymphoma Society (LLS) produced a moving video series, Cancer Survivorship in Young Adults: Acute Lymphoblastic Leukemia, which featured first-hand accounts from acute lymphoblastic leukemia (ALL) survivors about coping with their diagnosis and treatments, long- and late-term effects of treatments and survivorship.
We recently caught up with some of the survivors from the original videos to produce a new series, Young Adult ALL Survivors: Where Are They Now? Betty, Javier, Jeremy and Stephen joined us once again to share how cancer has impacted their careers, relationships and fertility since our last conversation. While each survivors’ story was unique – common threads ran throughout their experiences.
Here are some highlights from this latest series:
Careers: Each survivor was at a different stage of their career when they were diagnosed, with some even still in school. Betty was just coming off a four-month maternity leave and didn’t have any vacation time left. “Everybody donated their vacation and sick time to pay for my health insurance for six months,” she said. Stephen says he had a similar experience as Betty. “My co-workers, the few that knew what I was going through, they donated time and even some others who didn't know all the details, but they knew I was out, they donated their vacation and sick time and all that and I was able to get an actual salary for a lot of it.”
Jeremy, who was in college when he was diagnosed but was just about to enter the workforce, felt obligated disclose to potential employers that he was still in treatment because he would need to be out of the office at times. He felt "if they find out and they don't want to work with me, then I don't want to work for them."
Javier, who was in middle school when he was diagnosed, says he had no career plans at the time. When he finally entered the work force years later, he was reluctant to discuss his experience until he learned a fellow coworker had breast cancer. “She had a lot of questions,” he recalled. “I guess that's when I opened up and my colleagues found out what I had because at that point no one really knew and luckily that helped me. I was able to help her, point her in the right direction of certain things that I was able to answer certain questions.”
Fertility: For Jeremy, a glitch in the hospital process almost cost him the chance to have a family. “I was in college when I was diagnosed so they actually asked me if I wanted to bank (sperm) before getting chemo, and there was a little bit of logistical issue where they put the chemo in before the person came to do the banking. And legally they couldn't take it then.” Several years later he successfully started a family and now has two children, but he was left with a valuable lesson, “I guess the thing that I learned from it is asking the question upfront and making sure that you're your own advocate.” Fortunately, Betty, Javier and Stephen were all able to fulfill their dreams or starting or expanding their families.
Relationships: All four survivors are currently in loving, supportive relationships and all have children, but unfortunately for Betty, her battle with cancer ended her marriage. “The strain of the cancer treatment, financial issues and burdens that we went through ended our marriage.” While she notes that dating after cancer can be frustrating, Betty found love again. However, because her current partner didn’t live through her cancer experience she finds it difficult at times. “It's hard emotionally sometimes because I wish that he understood,” she notes. “And you can't understand unless you're there.”
Any patient, family member or caregiver who is affected by a blood cancer diagnosis is encouraged to contact an LLS Information Specialist who can provide one-on-one assistance throughout cancer treatment, financial and social challenges and give accurate, up-to-date disease, treatment and support information. Our Information Specialists are master's level oncology social workers, nurses and health educators. Click here to contact us.