LEAP into Advocacy Virtual Summit

UTILIZING SOCIAL HEALTH AND DIGITAL CONCEPTS TO INFLUENCE CRITICAL HEALTH DECISIONS

This event is approved for 4 CEUs.

THURSDAY, JUNE 30, 2022

10:00 AM – 2:30 PM CST

The LEAP into Advocacy Virtual Summit will explore how we, as advocates, patients, and caregivers, use social health and digital concepts to inform and influence critical health decisions. Social health is transforming our approach to healthcare; and digital concepts like telehealth continue to be a crucial tool in expanding how we access care. Social health and digital concepts are critical to maintaining and strengthening our health care workforce. Join us for the LEAP into Advocacy Virtual Summit to better understand how using social health and digital concepts are influencing critical health decisions.

SPEAKER BIOS

Ella Balassa is a patient advocate, consultant, and a person living with cystic fibrosis. She has committed her time to empowering patients and advancing healthcare strategies. She speaks publicly about the value of patient perspective and has a passion for distilling clinical information for patient communities. Through opportunities working with healthcare organizations on content strategy, writing, speaking, clinical trial development, and sharing the patient experience she aims to affect the healthcare landscape by raising awareness of rare diseases, promoting self-advocacy to patients, and valuable insights to organizations.

Niki Bonet is a passionate technology professional that thrives on solving her customer’s business challenges and exceeding their expectations. She brings over 12 years’ experience in enterprise-scale digital transformation while holding leadership and individual contributor roles for innovative private and public organizations. She encompasses exceptional insights in the Healthcare & Life Sciences sectors. In the past, she has worked alongside organizations such as Aetna, Blue Cross & Blue Shield, DaVita, and Cleveland Clinic bringing their digital health solutions to life. Niki has held both leadership and individual contributor roles for innovative private and public organizations. Galvanized by her own family’s experience with medical challenges for receiving an accurate diagnosis and appropriate care for a rare condition she became an active advocate for the Rare Disease community. Recently, she joined the team at Jamal’s Helping Hands; A Rare Disease Support 501C3 as their Programs Manager. In her free time, she enjoys being a life-long learner, Qigong (pronounced like Chi/CHEE-Gong) and reading. The easiest way to strike up a conversation with her is to ask about the grandkids or her dog!

Sarah Coff is a Senior Manager of Community Development at Health Union. With a background in public relations, journalism, digital marketing, and medical conference event management, Sarah knows exactly how to create safe, supportive spaces for those living with chronic illnesses. Sarah combines her experience on the business side of marketing for the medical industry with her passion for writing to encourage members to speak freely and make meaningful connections.

Kareem Edwards is the Vice President of Operations at the E.WE Foundation, a 501(c)(3) healthcare advocacy organization. He began his advocacy efforts after his 5th child received a prenatal diagnosis of rare disease Edwards Syndrome, or Trisomy 18. Kareem is a rare disease legislative advocate and foundation member of legislative coalitions within his home state. Kareem has a bachelor of science degree in Psychology and works full time as a Senior Manager for a Fortune 500 Logistics Company. Kareem lives in North Alabama with his wife Sarita and their five children – Jeffrey, Rian, Josiah, Jeremiah, and Elijah.

Sarita Edwards is CEO & President at the E.WE Foundation, a 501(c)(3) healthcare advocacy organization. She began her efforts of advocacy and public policy after her 5th child was diagnosed in utero with rare disease Edwards Syndrome or Trisomy 18. Sarita is recognized as a world’s top patient expert and social health ambassador. She is an award winning advocate and host of the Being Rare Podcast, an online resource hub and community conversations platform popular for its 60 second episodes. Sarita serves on executive boards and advisory councils within her home state and across the country. She is a rare disease legislative advocate, a member of multiple coalitions, and an active participant in DEI workgroups promoting health & racial equity, disability rights, and genetic advancements. Sarita also serves as a Community Congress member providing advice and insight on urgent policy initiatives. Sarita has a bachelor of science degree in Health Science with professional experience in Healthcare Administration & Patient Access. Sarita has certifications in Seizure Recognition & First Aid from the Epilepsy Foundation and Mental Health First Aid from the National Council for Behavioral Health & Mental Wellbeing. Additionally, Sarita has continuing education studies in effective parenting, childhood behavior, and childhood abuse & neglect. Sarita lives in North Alabama with her husband Kareem and their five children – Jeffrey, Rian, Josiah, Jeremiah, and Elijah.

Jennifer Harris is the Health Policy Advocate at Alabama Arise. As the health policy advocate, she works closely with consumer health advocates and Medicaid members to promote health policies that improve the quality of care and equitable health outcomes for all Alabamians. Jennifer has a knack for explaining the unfamiliar and navigating consumers through what they often perceive as unchartered territory when dealing with the intricacies of the healthcare
system— and in particular, with patient advocacy. She is skilled at crafting solutions that are well-tailored for consumers and gives thoughtful consideration to identify a clear path and a decisive course of action for successful and collaborative outcomes. Jennifer brings a wealth of knowledge to her work based on her professional career in both advocacy and nonprofit administration and her personal experience as a caregiver of someone with a chronic illness. Jennifer is a life-long Alabamian and studied law and social work at the University of Alabama. Prior to joining Alabama Arise, Jennifer was the executive director of the Sickle Cell Association -West Alabama Chapter, Inc for 10 years. She also previously worked as a social worker trainer/recruiter for prospective foster and adoptive parents. Following law school, she was the executive director of Florence/Lauderdale (Shoals) CASA. When not working, Jennifer enjoys recreating recipes in her kitchen, getting lost in a good book, and exploring the globe with friends and family.

Ilana Jacqueline is an Associate Director of Community Development at Health Union. She works with patient leaders and influencers to match them with new opportunities to share their insights and voices. She is the author of the book Surviving and Thriving with an Invisible Chronic Illness. She is enthusiastic about new media and bridging the gap between patients and the power of collaboration with pharma and healthcare brands.

Luisa Leal immigrated to the United States when she was 19 years old. She has two daughters; her eldest was born with a congenital anomaly in her hand caused by amniotic band syndrome, and Luisa’s youngest lives with an eye condition that caused numerous issues and put her at risk of losing her eyesight due to infection; she is also impacted by their mental health conditions. Luisa spent years taking both of her daughters to hospitals and clinics, working fiercely to help her children get access to the treatment and care they needed. That experience gave her first-hand knowledge of how difficult it can be for both documented and undocumented immigrants to navigate the healthcare system. Later, when she met the twin sons of an ex-partner, she discovered how challenging it was for their family to find information about Duchenne Muscular Dystrophy (DMD) in Spanish and access needed resources for children with special needs. She felt called to use her bilingual ability, health system experience, natural curiosity, drive, and problem-solving skills to make a difference for families dealing with DMD, and thus the Akari Foundation was born in 2017.

AudreyStephannie Maghiro is the Research Coordinator for the Undiagnosed Diseases Network (UDN) Coordinating Center in the Department of Biomedical Informatics at Harvard Medical School. The UDN Coordinating Center oversees the activities of the UDN, a network of clinical sites and research cores that evaluate patients with rare or undiagnosed conditions. Prior to joining the UDN in 2021, AudreyStephannie served as a college missionary in Maryland. AudreyStephannie received her bachelor’s degree in Molecular and Cellular Biology with a minor in Spanish from Harvard College. She enjoys reading, learning, working out, discussing the state and evolution of societal institutions, and laughing. She hopes to find a career in which racial justice, art, faith, and medicine are integrated.

Dr. Shruti Mitkus is the Director of Genetic Education and Navigation at Global Genes. Her current role involves creating genetic education content both for an individual patient and for community health campaigns and assisting patients by answering their disease-specific and genetic testing related inquiries. Shruti has over 20 years experience in human molecular genetics research and rare disease diagnostics. She earned her doctorate in Human Genetics from the University of Maryland Baltimore and completed her post-doctoral training at the National Institute of Mental Health researching the genetic mechanisms of schizophrenia and bipolar disorder. Having worked on pharmacogenomics in new drug development for neuropsychiatric disorders, Shruti went on to focus on genetic diagnostics and worked as a variant curation scientist at GeneDx where she helped rare disease patients by coordinating genetic testing and analyzing DNA variants to determine if they were pathogenic or benign. 

Laura Romano has a Bachelor of Science in Neuroscience from Simmons University. They were diagnosed with Classical-like Ehlers-Danlos Syndrome in 2017 and have spent the past several years participating in a variety of advocacy work for the EDS community and the larger rare disease community. Laura has worked with Governor Baker of MA and the Pepperell Select Board to have the month of May recognized as Ehlers-Danlos Syndrome Awareness Month and is working on the process of designing an educational program that could be offered to pediatricians throughout the state to increase awareness of the symptoms of EDS to aid in earlier diagnosis.

Christine Von Raesfeld is the founder and CEO of People with Empathy. Christine is a pillar of patient advocacy and allyship in the rare and chronic disease community. Through the lens of her lived experiences in healthcare, she has become a champion for patient voices, diversity and inclusion in clinical research, and equitable patient-sponsor partnerships. Christine has brought her unique perspective and honed expertise to countless roles as a featured speaker for numerous conferences dedicated to the rare disease community and disease awareness initiatives. Wherever possible, Christine generates momentum toward progress along her patient advocacy interests and stimulates dialog on a range of topics relevant to patients, clinicians, and industry as moderator and host of Health.Reconsidered on clubhouse. As a patient advisor, Christine has assisted several initiatives including the Stanford “Humanwide” Precision Medicine Program, All of Us Research, and the 23andMe Lupus initiative. For her many contributions to her field, she has been named one of the top 100 Women of Influence by Silicon Valley Business Journal, a member of the 2021 HIMSS Future50, and a MIT Entrepreneurial Challenge finalist with the Neurolink team among other distinctions. With her guidance and support, we will continue to optimize the patient journey for people worldwide.

Shivani Vyas is host of The Rare Disorder Podcast. Shivani is from Atlanta and is first-year Robertson Scholar at Duke. She has interned at rare disease organizations including Rare Disease Innovations Institute and Cure Rare Disease. Shivani is passionate about public speaking at conferences and advocating for legislation through RDLA. She enjoys meeting with lawmakers during Rare Disease Week and collaborating with patients and healthcare leaders on her podcast. In her free time, she likes to explore the outdoors, practice yoga, and spend time with friends.

Sheyene Walmsley (she/her) is a Genetic Counselor and project manager with the Genomes2People Research Program at Brigham and Women’s Hospital and Harvard Medical School. She is the new lead project manager for the PopSeq Project and co-project manager for the BabySeq2 Project. The PopSeq Project is an NIH-funded prospective cohort study exploring the return of genomic results to the Jackson and Framingham Heart Study populations, improving high-throughput methods for identifying harmful genomic variants, and exploring genomic penetrance. The BabySeq2 Project is an NIH-funded randomized control trial studying the medical, behavioral, and economic outcomes of genome sequencing for expanded newborn screening. Clinically, she sees patients in the Mass General Brigham Preventive Genomics Clinic, offering proactive genome sequencing for future health risks. She received her bachelor’s degree in biology with a specialization in cell and molecular biology and genetics from Boston University and her master’s degree in genetic counseling from the MGH Institute of Health Professions.

Kristine Zerkowski serves as Vice President of Community Development at Health Union. With over a decade of experience in medical and scientific communications, Kristine integrates her healthcare expertise with her extensive knowledge of community management to oversee the launch and management of Health Union’s 40+ condition-specific online health communities.

Bethany Zettler (she/her) is a Senior Genetic Counselor and project manager with the Genomes2People Research Program at Brigham and Women’s Hospital and Harvard Medical School. She is the lead project manager for the national BabySeq2 Project. This NIH-funded randomized controlled trial is studying the medical, behavioral, and economic outcomes of genome sequencing for expanded newborn screening. Clinically, she sees patients in the Mass General Brigham Preventive Genomics clinic, offering proactive genome sequencing for future health risks. She received her bachelor’s degree in Biomedical Engineering from Boston University and her master’s degree in Genetic Counseling from Brandeis University.

The E.WE Foundation is an approved Alabama State Board of Social Work Examiners Continuing Education Provider. This event is approved for 4 CEUs. Eligible participants should only claim the credit commensurate to their attendance.