(615) 324 - 2365 info@ayaca.org

Dynamic Panels. Collaborative Discussions. Creating Waves.

 

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Are YOU ready to create some waves?  We are!

As an organization, we are ready to challenge the status quo and transform the way we approach collaboration, advocacy, innovation, and AYA cancer care.  The health outcomes of AYA cancer patients everywhere depends on it.  We hope that by attending this program, you will emerge with relevant clarity and a community full of multi-faceted support lasting far beyond  the conference.  Join us as we we aim to answer the following questions together:

  1. What are the barriers that professionals in AYA cancer care are facing?
  2. What barriers hinder you in your ability to provide care for AYAs?
  3. How can a collective organization help you overcome these barriers?

We'll see you soon!

Session 1: Patient-Level Perspective

Moderators: Lauren Ghazal and Rachel Westlake

Lizzy Menges

I’m Not Done Yet Foundation

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Lizzy Menges is an active volunteer throughout her community. She holds a variety of positions at the NYU Langone-Long Island health system, including as vice-president of the hospital Auxiliary, president of the Pediatric Patient and Family Advisory Council, a member of the Board of Regents, and a member of the NYU Langone-Long Island School of Medicine Admissions Executive Committee. She also sits on the boards of the Duke Cancer Institute and the Case Comprehensive Cancer Center.

After the death of her 19-year-old son Bobby in 2017, Lizzy and her family founded I’m Not Done Yet in his memory. I’m Not Done Yet supports AYA cancer patients and survivors across the country through a variety of initiatives, including fertility preservation services, peer-to-peer connection, and psychosocial programs.

Lizzy and her husband, Pete, live in Garden City, New York where they raised Bobby and his three older siblings.

 

CARLO LOPEZ

The Cancer Patient

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Mr. Carlo Lopez is a two-time cancer survivor, advocate, and community builder for cancer patients. Acknowledging the massive need for support, in 2018 he created the first and largest social media cancer support platform with nearly 100,000 followers worldwide. This platform spans Instagram, Twitter, and a podcast. His work as a content creator couples humor with an honest take.

Carlo is passionate about changing the narrative for AYA cancer support. His unique perspective is rooted in his background as a patient and medical professional - he previously worked as a Clinical Research Nurse at Northwestern and is currently an AYA Oncology Nurse Navigator at UChicago Medicine.

HAILEY JOHNsTON

Escape AYA Cancer

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Hailey Johnston (they/them,she/her) is a graduate student at the University of Michigan School of Public Health and the Founding Board President of Escape. Escape is the first and only organization solely dedicated to serving LGBTQI2+ Adolescent and Young Adult Cancer Patients, Survivors, and Caregivers. Since their diagnosis with Hodgkin’s Lymphoma in 2012 and caregiving for her mom and grandmother, Hailey has been passionate about better understanding and supporting the needs of the cancer community. This passion led to obtaining a B.A. in Political Science from the University of North Carolina at Asheville, focusing their studies on cancer disparities, political determinants of health, health justice, and policy that creates equitable access to care for historically excluded communities. Hailey values deep conversation, community building, and amplifying the voices of those most overlooked in cancer care. When they’re not working, they’re likely spending time in nature with their pups, kayaking, or in the kitchen cooking with friends and family. Visual description: Hailey is a white, tall, queer, nonbinary woman with pixie style short, curly, dark brown hair

Session 2: Hospital, Health Systems, and Regional Organizations Making Unique Impacts

Moderators: Caroline Dorfman and Megan Gilman

Emily Long Sarro

Memorial Sloan Kettering Cancer Center

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Emily Long Sarro earned her BSN from NYU and began her career as a clinical nurse on the pediatric hematology oncology unit at Memorial Sloan Kettering.  She completed her MSN, Family Nurse Practitioner degree at Columbia University, then became a member of the Pediatric Stem Cell Transplant team. Emily developed a nursing intervention program, entitled PASTRY, to combat moral distress and has been published in Nursing Ethics.  

Emily has a passion for supporting the unique needs of adolescent and young adult patients. In 2020 she became the sole advanced practice provider to launch and expand MSK’s AYA Program. In this role, she marries clinical care, program development, research, and provider empowerment. She has earned funding for multiple initiatives, including the APHON EBP grant for the AYA Champions program.  

Amber Skinner

Moffitt Cancer Center

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Amber Skinner is the Adolescent and Young Adult (AYA) Program Administrator at Moffitt Cancer Center in Tampa, Florida. Amber has served as the liaison between the AYA population, program leader and multidisciplinary committee at Moffitt for six years and leads daily program management activities for the eight AYA program pillars. Amber also serves as an AYA Program representative, creating community partnerships, aligning resources for patients, and organizing advocacy and research efforts for Moffitt’s AYA Program. Amber is passionate in advocating for young adult cancer patients and improving health equity in the AYA population. Ms. Skinner earned a Bachelor of Science degree in biology from Murray State University and a Master of Public Health from the University of South Florida.

Sara Walcott

Ulman House in Baltimore

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Sara Walcott is the Chief Operating Officer at the Ulman Foundation in Baltimore, MD. She received a BSc in Economics, a minor in Psychology, and an MBA from Duke University. Sara loves supporting others in making complex and critical decisions and began her career in investment management as an analyst, marketer, and general manager. She transitioned her career into the non-profit sector and joined the AYA Cancer Community when she became a part of the Ulman team in early 2018. Sara started out managing the business operations of the organization and then also led the Ulman House team through both their first year in operation and the first year of the pandemic. As Chief Operating Officer, Sara now leads all of Ulman's Service & Care Delivery efforts including Patient Navigation, Ulman House, and Ulman's traditional and non-traditional support programs, as well as continuing to lead the behind the scenes operational functions of the organization. Sara considers it both a privilege and an honor to be able to support the AYA Cancer Community, the Ulman staff, and all of Ulman's partners and clients. 

Brittany Hall

Fort Worth AYA Oncology Coalition

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Brittany Hall, Ph.D., is an Associate Professor at UT Southwestern Medical Center. She earned her graduate degree from Seattle Pacific University in 2014 and completed her postdoctoral fellowship at Harbor UCLA where she received extensive training in supervision and evidence-based treatment modalities.  She joined the UT Southwestern faculty in 2015 and currently serves as the Associate Director of Behavioral Sciences at the UT Southwestern Moncrief Cancer Institute and is the AYA Psychologist for the Fort Worth Adolescent and Young Adult (AYA) Oncology Coalition. Among her many activities, she conducts research with the AYA population to design innovative psychosocial interventions, and she provides clinical services and supervision of trainees working with AYAs.  She founded and leads the AYA Psychology research team at UT Southwestern Medical Center.

 

Karen Albritton

Fort Worth AYA Oncology Coalition

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Karen Albritton, MD, is an oncologist specializing in the care of adolescents and young adults. She received her medical degree at the University of Texas Health Science Center San Antonio, and completed her Medicine/Pediatrics residency and oncology fellowships at the University of North Carolina. Her research focuses on access to care and outcomes for AYAs with cancer, and she has been active with the Children's Oncology Group, National Cancer Institute and advocacy organizations to improve policy and standards of care for this underserved group. She is currently Director of AYA Oncology at Cook Children's Medical Center, founder of the Fort Worth Adolescent and Young Adult Oncology Coalition (FWAYAOC), and a founding officer of the national Adolescent and Young Adult Cancer Alliance.

JACKIE BALLIOT

Duke

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Jackie Balliot is the Teen and Young Adult and Oncofertility Nurse Navigator at Duke Cancer Institute. She has been a registered nurse for five years, and prior to her role as a nurse navigator, she worked as an inpatient oncology nurse in both pediatric and adult oncology. She is also an AYA cancer survivor, and has been involved in AYA patient advocacy in various capacities for over 10 years.

 

Andrew Smitherman

The University of North Carolina at Chapel Hill

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Andrew “Smitty” Smitherman, MD MSc is an Associate Professor of Pediatrics, the Medical Director for the UNC AYA Cancer Program, and a “true blue” North Carolinian. Smitty received his AB in religious studies from Davidson College and then worked as a high school teacher before deciding that medicine is his true calling. He attended medical school at East Carolina before moving to UNC for a combined residency in Internal Medicine and Pediatrics and a Pediatric Hematology/Oncology Fellowship. Smitty’s research and clinical interests focus on improving cancer care for adolescents and young adults (AYAs) as well as survivors of childhood, adolescent, and young adult cancers. His current work focuses on the use of lab-based and clinical biomarkers to identify accelerated aging in young adult survivors.

Lauren Lux

The University of North Carolina at Chapel Hill

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Lauren Lux (she/her), LCSW, is the Director of the AYA Oncology Program at the University of North Carolina at Chapel Hill. Her work as Program Director focuses on patient care, psychosocial research, programming, provider education, quality improvement, and advocacy. Along with her fabulous partners, she leads efforts to improve care for AYAs around the state of North Carolina and is involved in the advancement of the AYA oncology field in the United States. She has worked as a clinical social worker in the field of oncology throughout her career and her clinical practice and program work is inspired and informed by the incredible young people she meets every day.

Session 3: National Advocacy: State and Federal Policy Impacts

Moderators: Michelle Altmaier and Vinayak Venkataraman

Tamika Felder

Cervivor

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Tamika Felder is an award-winning, high-energy inspirational speaker on a mission to educate, entertain, and mobilize others to live life with purpose, whatever their obstacles.

Whether speaking from her experience as a content creator, brand builder, cause marketer or television producer, Tamika gets personal and shares her story, translating her challenges and learnings into “goal crushing” action steps to move past fear and live unapologetically. Her life-affirming worldview has been featured on Good Morning America, The Washington Post, People, Essence and SELF magazines among others. 

 

The author of “Seriously, What Are You Waiting For? 13 Actions To Ignite Your Life & Achieve The Ultimate Comeback,” Tamika empowers everyday people to bounce back by equipping them with tools to find perspective after tragedy and loss. An engaging facilitator and former host, her undeniable energy not only brings people together, she also gets them talking.

A cancer survivor, award-winning women’s health advocate, and Chief Visionary at Cervivor - a nonprofit dedicated to cervical cancer advocacy and support - Tamika also has a mission to eradicate cancer and shine a spotlight on the patient voice in healthcare.

Named a “Cancer Rebel” by Newsweek, Tamika is a highly sought-after speaker on cervical cancer advocacy, cancer prevention, HPV education, and living life with purpose. She’s shared her story on Presidential Panels convened by the White House, trained thousands of ambassadors using her signature patient advocacy framework, and traveled internationally to share her experiences with women around the world. Tamika currently serves on the steering committee of the National HPV Vaccination Roundtable. A member of Family Reach Cancer Equity Initiative National Strategic Council, she is regularly tapped by leading organizations and Fortune 500 companies around the globe to share her story and expertise.  

 

An award-winning television producer and host, Tamika is a captivating personality; as well as an engaging and talented storyteller. Her work has led to her being featured in Bravo’s Real Housewives of Beverly Hills franchise; as well as a profile feature in the award-winning documentary Someone You Love: The HPV Epidemic. Tamika also makes a cameo appearance in ESPN’s 30 for 30 docu-series. Tamika is currently filming a documentary about cervical cancer, the women living with it, and the vaccine to prevent it. Her story of patient-to advocate / survivor-to-Cervivor inspires patients, medical communities, and anyone who has struggled with overcoming life’s biggest obstacles. 

 

Passionate about empowerment, Tamika spreads her unique message of survival and resilience with people around the globe. She lives life unapologetically and shares with others how to do the same. Learn more about her work at Cervivor.org and TamikaFelder.com

Susan Parsons

Tufts Medical Center

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Susan K. Parsons, MD, MRP is the medical director of the Reid R. Sacco Adolescent and Young Adult Cancer Program at Tufts Medical Center and research director of the Center for Health Solutions within the Institute for Clinical Research and Health Policy Studies. She is a professor of medicine and pediatrics at Tufts University School of Medicine.

 Dr. Parsons’ career has combined formal graduate training in health economics and planning with extensive clinical training and experience in hematology/oncology, and cancer survivorship. She is a pioneer in the development and application of health-related quality of life (HRQoL) assessments in pediatric oncology. Nationally, she serves as the scientific lead of cancer care delivery research (CCDR) within the Children’s Oncology Group (COG) and is a member of the National Cancer Institute’s (NCI) Scientific Steering Committee for CCDR. CCDR focuses on the cost, quality, and access of cancer care—particularly among minority and underserved communities. In the recently completed Phase III study for high risk Hodgkin Lymphoma within COG, AHOD 1331, she co-led embedded studies on chemotherapy-induced peripheral neuropathy, longitudinal HRQoL, and cost effectiveness study of novel agents. In the actively accruing joint adult-pediatric Phase III trial, S1826, she is the chair of the patient-reported outcomes (PRO) studies, evaluating HRQoL and symptom burden of novel agents. With Dr. Michael Roth, she co-leads the cross-network AYA PRO Initiative, funded by the NCI’s Childhood Cancer Data Initiative. This has results in consensus recommendations for HRQoL and symptom assessments, which have been adopted in five AYA clinical trials. With Dr. Andrew Evens, she is co-founder of the newly established “HoLISTIC Consortium (Hodgkin Lymphoma International Study for Individual Care), involving more than 65 clinicians and researchers from North America, Europe, and Australia. Through this international collaboration, she has assembled and harmonized individual patient data on more than 18,000 patients with HL, which her team has leveraged to develop and test a simulated decision model for patients and providers at the time of initial HL diagnosis through a recently funded 5-year R01 from NCI.

 

Theresa Keegan

UC Davis Health

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Dr. Keegan is a cancer epidemiologist with primary research interests in studies of cancer outcomes, health disparities and cancer survivorship. She has undertaken numerous studies with population-based cancer registry data in the United States, both alone and linked to other administrative and clinical databases, to understand patterns of cancer treatment and outcomes. Dr. Keegan has also been involved with multiple studies examining patient experiences with cancer and patient-reported outcomes after cancer diagnosis. A focus of her research is in adolescent and young adult (AYA) oncology where her research has documented sociodemographic disparities in stage at diagnosis, treatment, access to specialized cancer center care, late effects and survival.

Anne Kirchhoff

University of Utah School of Medicine

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Anne C. Kirchhoff, PhD, MPH is a tenured Associate Professor of Pediatrics at the University of Utah School of Medicine and a Huntsman Cancer Institute Investigator in the Cancer Control and Population Sciences Research Program. As a health services researcher, her program primarily concerns evaluating patient outcomes related to healthcare access and cancer late effects, and developing interventions for childhood, adolescent and young adult cancer survivors, with a focus on addressing the social and financial consequences of cancer. Dr. Kirchhoff leads a range of studies from interventions at Huntsman Cancer Institute and Primary Children’s Hospital to statewide analyses of survivor outcomes using the Utah Population Database. Her research interests also include using large, population-based surveys to examine socioeconomic outcomes of cancer survivors. Dr. Kirchhoff has a strong history of funding as a Principal Investigator from both institutional grant support and external funding via the NIH and foundations, including an NCI R01 to develop and test insurance educational materials for adolescents and young adults with cancer. Since 2007, she has collaborated with and led several studies with the national Childhood Cancer Survivor Study (CCSS). Most recently, she is a Co-Investigator of an American Cancer Society grant to test an insurance navigation program with survivors recruited from this cohort.

Dr. Kirchhoff completed her doctoral degree in the Department of Health Services at the University of Washington School of Public Health, where she was funded by the National Cancer Institute’s R25 Education and Career Development Program. She also received her MPH in Health Education and Behavioral Science from the School of Public Health at Saint Louis University.

Joyce Reineke

Alliance for Fertility Preservation

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Joyce is the Executive Director of the Alliance for Fertility Preservation, a national nonprofit organization focused on all aspects of fertility preservation for cancer patients. Prior to joining the AFP, Joyce was a Cancer & Fertility Advisor for the LIVESTRONG Foundation, and the Vice President of Programs for Fertile Hope.

She is a recognized leader in the field of fertility preservation who has been a featured speaker at numerous professional conferences, including ASCO, ASRM, ONS, the Oncofertility Consortium Conference, as well as serving as guest faculty for health policy graduate courses at UCSD and Northwestern. She is a co-author of the 2018 update of ASCO’s fertility guidelines, and several other publications.

Joyce is a long-term survivor of leiomyosarcoma who opted for embryo freezing and surrogacy to create her family. Her personal oncofertility journey informs her professional focus and her commitment as a patient advocate. Prior to her work at Fertile Hope, Joyce was a trademark attorney in Seattle, WA. She has a law degree from Fordham University, and a B.A. from Occidental College. Joyce currently lives in Lafayette, CA with her husband, John, and their twin daughters, Alexandra and Olivia.

Mike Roth

The University of Texas MD Anderson Cancer Center

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Dr. Michael Roth is a pediatric oncologist and AYA research investigator at the University of Texas MD Anderson Cancer Center. His research focuses on improving care and outcomes for children, adolescents and young adults diagnosed with cancer with a specific interest in improving the long-term health, quality of life and survival for these patients.  He is the co-director of the AYA Program and director of the Childhood Cancer Survivorship Program at MD Anderson. In addition he is the current chair of the AYA Oncology Discipline Committee in the Children’s Oncology Group and he leads the AYA Responsible Investigators Network, whose mission is to optimize enrollment of AYAs onto cancer clinical trials.

Session 4: We're Just Getting Started: Moving Forward Together.

Moderators: Annah Abrams, Rachel Westlake, Andrew "Smitty" Smitherman, and Lauren Lux

We are very excited to introduce our graphic facilitator, Anne McColl, who will be bring this highly interactive session to life right before our eyes!  As we answer the questions below together, we will move forward as a robust and strong community poised to change the health outcomes of AYA cancer patients. 

  1. What are the barriers that professionals in AYA cancer care are facing?
  2. What barriers hinder you in your ability to provide care for AYAs?
  3. How can a collective organization help you overcome these barriers?

This is a session you won't want to miss! Come prepared to collaborate and get plugged into your AYA cancer community!