Executive Director, Head, Global Patient Insights and Solutions (GPIS)
Judith L. Campagnari
Executive Director, Head, Global Patient Insights and Solutions (GPIS)
Judy Campagnari, MBA is Executive Director, Head of Alexion’s Global Patient Insights and Solutions (GPIS). She leads a team of innovators who partner with patients and other external stakeholders to create solutions and strategies to support decision-making related to the company’s drug development and commercial activities, thus creating beneficial change for people living with rare diseases. Judy has more than 25 years in the pharmaceutical industry and is a pharmaceutical strategist with proven experience creating “value from vision”. She has extensive experience developing strategic commercial plans for candidates from the pre-clinical/discovery phase through proof of concept. She has broad therapeutic & disease area expertise including rare disease, neurology, metabolic diseases, bone diseases, gastrointestinal diseases, immunology, and oncology. Judy has a bachelor’s degree from Smith College (Northampton, MA), an MBA from the Katz Graduate School of Business (University of Pittsburgh), and an Executive MBA Certificate from the Harvard Business School.
Dr. Balch has over twenty years of executive leadership in the non-profit sector with an emphasis on consensus-building and collaboration. He has led numerous federal advocacy efforts on a range of issues both at the legislative and regulatory level. He became the CEO of both NPAF and PAF in 2013. From 2006 - 2013, he served as the Vice President of the Preventive Health Partnership -- a national health promotion collaboration between the American Cancer Society, American Diabetes Association, and
American Heart Association. Prior to 2006 Dr. Balch was the Executive Director of Friends of Cancer Research.
Dr. Balch has served on the Executive Board of the Patient Advocate Foundation and National Patient Advocate Foundation since 2007. He also serves on numerous advisory boards and committees. He earned his PhD in environmental studies with a concentration in political economy in 2003 from the University of California, Santa Cruz; master’s degree in environmental sciences in 1997 from the University of Texas in San Antonio; his bachelor’s degree (cum laude) in biology in 1994 from Trinity University in San Antonio.
Tricia Mullins is the Global Head, Patient Advocacy at Atara Bio, with 20 years of experience working in patient advocacy, medical affairs and commercial operations globally. She has held key leadership roles of increasing responsibility over her career and has extensive experience bringing novel therapies to market, launching 10 unique products, 5 in the ultra-rare space. Tricia holds a Bachelor of Science in Business and Communications from St. John’s University and is pursuing her Master’s in Public Health. In her spare time, Tricia serves as Co-Chair of the Board of Directors at the Neuromuscular Disease Foundation (NDF), a non-profit organization, for those living with GNE Myopathy, an ultra-rare condition. Tricia also serves as an ongoing mentor to advocates in the rare disease community. Tricia is passionate about patients, advocacy, and access, bringing new innovative solutions to companies, patient organizations, patients and their families living with rare, chronic, and life-threatening conditions.
Wendy has built her patient advocacy career in many rare disease communities and oncology. Wendy Erler is the VicePresident of Patient Experience, STAR and Advocacy at AstraZeneca in Alexion’s rare disease, where she is responsible for leading the enterprise innovation model to gather and incorporate patient insights throughout the drug development and commercialization processes. She leads the Global PatientAdvocacy function and has responsibility the rare disease patient advocacy team.Previously, Ms. Erler was on the executive leadership team at Wave LifeSciences where she led Patient Advocacy and Commercial. Wendy graduated from Miami University and earned her MBA from St. Joseph’s University.
Mandy Rohrig serves as the Associate Director of Patient Advocacy at BridgeBio Gene Therapy. She received her Doctorate of Physical Therapy in 2006. Her initial experiences in advocacy were as a clinical physical therapist, advocating for the mobility needs of her patients with progressive neurological conditions. In parallel, her experiences expanded to program development for an international non-profit advocacy organization that focused on multidisciplinary, online and in-person, wellness programs for people with Multiple Sclerosis and their families. She transitioned to industry in 2020, first serving as a patient advocacy consultant before joining BridgeBio full-time in 2021. Mandy is interested in growing trusted partnerships between advocacy organizations and industry while expanding opportunities for them to work together to better serve the disease community.
VP and Head of Strategic Partnerships and Innovation
Kalahn Taylor-Clark, PhD, MPH
VP and Head of Strategic Partnerships and Innovation
Kalahn Taylor-Clark, PhD, MPH is Vice President and Head of Strategic Partnerships and Innovation at Myovant Sciences. In this capacity she oversees patient centered advocacy and digital innovation. Her team is responsible for driving transformative advocacy in the areas of women’s health and prostate cancer, addressing health equity, and advancing digital innovation strategies to improve patient experiences and outcomes.
Prior to this post Dr. Taylor-Clark served as the Global Head of Patient Centered Outcomes and Innovation at Sanofi. In this post, she served as the strategic patient lead to global business units in the US/EU, China and Emerging Markets, across all therapeutic areas of the company. Taylor-Clark’s work helped the company to develop, measure, amplify and adapt solutions based on key stakeholder input (e.g. patient advocacy groups, scientific societies and community-based organizations).
Dr. Taylor-Clark also served as a Senior Advisor to the Center for Health Policy, Research and Ethics and Assistant Professor in Health Administration and Policy at George Mason University, where she provided strategic guidance on the development and evaluation of patient and consumer engagement activities for a range of stakeholders, including: private and public payers, hospital and integrated health systems, business groups, and policy leaders. Previously, she served as the Director of Health Policy at the National Partnership for Women and Families, where her primary responsibilities were in providing strategic direction on a range of activities related to delivery system and payment reform, including: quality measurement, reduction of health disparities, patient and consumer engagement in patient-centered care delivery and the effective use of health information technology (HIT) to improve patient-reported outcomes measurement. From 2007-2011, Dr. Taylor-Clark led the Patient-Centeredness and Health Equity Portfolios in the Engelberg Center for Health Care Reform at the Brookings Institution in Washington D.C.
She holds a BA in International Relations from Tufts University, an MPH from Tufts School of Medicine, and a PhD in Health Policy from Harvard University. She serves as a Member of the Board of Trustees for Tufts University, and as President of the Board of Directors at Prevention Institute in Oakland, CA. Dr. Taylor-Clark is an adjunct professor at the Carey School of Business at Johns Hopkins University. Dr. Taylor-Clark has also lived in Japan, Ghana and France, and is proficient in French.
Tom Croce is vice president for global patient advocacy at Jazz Pharmaceuticals, the fully integrated global biopharmaceutical company with a diverse portfolio of marketed medicines and a promising pipeline in neuroscience and oncology. Tom and his team are responsible for the identification and integration of patient perspectives across the entire development and commercial continuum, while ensuring meaningful representation to patient, caregiver and advocate partners around the world. He is also responsible for building and implementing the company’s social impact strategy. Tom is a member of Jazz’ global leadership team as well as its legal and corporate affairs leadership team.
Prior to joining Jazz, Tom was vice president for global patient advocacy at bluebird bio, inc., the biotechnology company. He and his team contributed to development and approval of two breakthough gene therapies for severe genetic diseases. Tom also oversaw the company’s efforts to educate and activate the advocacy community on the transformative nature of regenerative medicine. His contributions to bluebird’s DE&! initiatives helped enhance internal and external engagement and belonging.
Earlier, Tom served in senior roles at Amgen Inc., Shire Pharmaceuticals. He began his career at Boehringer Ingelheim, Pfizer and Wyeth. A graduate of the Philadelphia College of Pharmacy, University of Sciences, Tom lives outside of Boston with his wife, daughter and much beloved dog Stegosaurus.
Marianne Gandee is the leader of Pfizer Oncology’s Patient Solutions and Alliances Group for North America. This patient-centric team brings together the operational excellence of Pfizer’s Advocacy & Professional Relations Team, Field Reimbursement Team and our patient solution platforms – Pfizer Oncology Together and This is Living With Cancer.
Marianne has worked in advocacy for nearly a decade and has been a trailblazer in creating unconventional partnerships and forward-looking initiatives to drive system change towards optimal care for cancer patients. She has a track record of leading her team to develop strong relationships with great organizations such as Susan G. Komen National, Cancer Support Community, ACCC, AUA and many more. Through her leadership, Pfizer Oncology is working to align with National stakeholders to understand and collaboratively address access, disparities and execute on impactful solutions for the ongoing issues that continue to create barriers to care for cancer patients.
Sickle Cell Reproductive Health Education Directive
Chief Executive Officer
Teonna Woolford was born and raised in Baltimore Maryland. She has always been talkative, friendly, and full of life. She has Sickle Cell Anemia SS and has faced numerous health complications as a result. A true fighter at heart, she has recovered from numerous complications including bilateral hip replacements, a failed bone marrow transplant, many pain crises, and several other complications. She has a zeal for effecting change throughout the Sickle Cell community and understands the realities of those impacted by the disease. While sickle cell has been a huge part of Teonna’s life, she does her best not to let sickle cell define who she is. Teonna has been blessed to sit at some incredible tables and contributed to publications and working committees with the American Society of Hematology and NHLBI. She is also the founder and CEO of a new nonprofit organization, The Sickle Cell Reproductive Health Education Directive.
Teresa Ginger Davis Biography.
Teresa Ginger Davis has been a life-long health and education advocate, and spokesperson for sickle cell disease. She has more than 25-years of experience in the health industry.
Prior to starting her development and communications consultancy UNTOLD Story LLC in 2016, she was an allied healthcare professional – working as a genetic councilor, health educator and advocate. Davis has participated in developing national health policy with organizations like NYMAC (NY-Mid Atlantic Genetics Council), and the NYS
Sickle Cell Advisory Consortium. As the former Director of Outreach and Development of the Sickle Cell Thalassemia Patients Network (SCTPN) she created, implemented, and coordinated the organization’s public education program activities, in addition to implementing a diversified fundraising program.
Through SCTPN, Ms. Davis applied her biology and naturopathic health education towards working with eighteen New York City hospitals on HRSA grants to deliver care coordination and transitions services for pediatric hematology clients and their families, also care coordination and referral to needed services for adults lost to care after transitioning from pediatrics.
SCTPN is one of four NE CBOs to be awarded the HRSA Newborn Screening Follow-Up multiyear grant, and is the lead CBO for the NYS Health & Hospital Services Collective
Impact Initiative to End the Stigma Against Sickle Cell Disease. Ginger is now leading SCTPN as its newly elected president.
Her two top priorities for the next 3-years is to:
1. Driving the organization’s expansion statewide by establishing affiliates and
chapters in Staten Island, Long Island, Albany, Buffalo, Rochester and Syracuse; and
2. Collaborate with other sickle cell organizations to increase public education and
testing for sickle cell trait (SCT) in the northeast region.
Founder/President- Sarcoidosis of Long Island
Advocate, Navigator and Mentor - Foundation for Sarcoidosis Research
February 2015- Accommodation for President Barack Obama
Frank Rivera is a two time published author:
An autobiography called "Walking in Silent Pain"
A continuation biography "I Have Sarcoidosis but it Doesn't Have Me", a book about Strength and Resilience.
December 2017 Frank was named People of the Year in the newspaper organization TBR News Media.
April 2018, Frank was interviewed by NBC Nightly News about the “Right To Try” bill.
2020- 2021- Organized 4 Online Forums.
Worked with a group of Sarcoidosis doctors, researchers and patients to have a medical journal published by NIH: https://pubmed.ncbi.nlm.nih.gov/34203584/
Barby Ingle is a best-selling author, reality personality, and lives with multiple rare and chronic diseases; reflex sympathetic dystrophy (RSD), migralepsy, PALB2-var breast cancer, valley fever, endometriosis and other pain disorders. Barby is a chronic pain educator, patient advocate, and president of the International Pain Foundation. She is also a motivational speaker and best-selling author on pain topics. Her blog, reality shows and media appearances are used as a platform to help her become an e-Patient advocate, and she presents at healthcare conferences, speaking publicly, sharing her story, educating and advocating for patients across the globe. She has received more than 20 accommodations over the years for her advocacy work .
Dr. Nizar serves as Founder and Executive Director of the Jansen’s Foundation. She is a rare disease advocate and Change Leader in the rare disease community, specifically in the field of ultra-rare skeletal dysplasias. Dr. Nizar has a Doctoral degree in Educational Leadership from Creighton University, Nebraska, is a TEDx speaker, a blogger and passionate voice for the special needs community. She is a Trailblazer for the Rare Advocacy Movement (RAM) and Nebraska’s Mother of The Year, 2018. Dr. Nizar is also a rare disease patient and a mother to two boys with Jansen’s Metaphyseal Chondrodysplasia – a disease that affects less than 30 people worldwide.
Center for Information Study on Clinical Research Participation (CISCRP)
Jill McNair, MBA
Chief Growth Officer
Jill has worked in the industry for over 25 years. She is the Chief Growth Officer at the Center for Information and Study on Clinical Research Participation (CISCRP) where she has worked since 2007. I joined CISCRP in 2007 to advance our mission to inform and empower patients and the public as partners in clinical research. Throughout my tenure, I have led a variety of teams and functions in delivering on our mission and advocating for public health literacy, patient education and engagement.
In my new role as Chief Growth Officer, I focus on nurturing our established relationships, building new ones, and on identifying and developing new opportunities. As a non-profit innovator, CISCRP is uniquely positioned to serve patient communities and clinical research stakeholders throughout the world with the highest quality educational and advocacy services. I’m so excited about the trajectory of CISCRP’s growth and welcome the opportunity to nurture current and new relationships and collaborations.
As a non-profit innovator, Jill serves patient communities and clinical research stakeholders throughout the world with the highest quality educational and advocacy services. Jill received her MBA from the Fox School of Business at Temple University, and she resides in Bucks County, PA with her husband, three children and three dogs.
Christine Von Raesfeld is a leader in bringing a critically needed patient perspective to cutting edge medical innovations. Committed to providing patients with chronic and rare diseases with the support they need, Christine works with patient advocacy organizations, industry representatives, and individual patients and their loved ones. Living with many rare and chronic diseases, she believes that in order to foster understanding and empowerment, patients must be treated as people first. As a patient involved in Stanford's Humanwide program, she speaks on the benefits and advantages of precision medicine, with a special interest in pharmacogenomics.
Christine’s drive to make lives better for patients has been nationally recognized. In 2019, she spoke on stage at the Startup Health Festival as an invited guest of Sanguine Biosciences. In 2018, Christine served on the Team of Patient Advisors for PatientsLikeMe. She was also recognized as a Wego Health 2018 Top 10 Healthcare Collaborators Patient Leader as well as named one of Silicon Valley Business Journal's 100 Women of Influence for 2019.
Christine’s conference speaking engagements, consulting efforts, and ability to share her personal experiences have allowed her to bring a much-needed change to the healthcare industry while bridging the gap between biopharmaceutical and patient stakeholders.
Khrystal joined the rare disease community in 2011 when her newborn son, Hunter, was diagnosed with Spinal Muscular Atrophy (SMA) Type 1, the leading genetic cause of mortality in children under the age of two. SMA Type 1, often described as ALS in babies, robs the ability to move, swallow, and ultimately breathe. Khrystal is the author of Hunt for a Cure: An Unexpected Adventure to Save a Life. Khrystal founded Zebra Leaf Publishing to provide the rare disease community a platform to promote rare disease awareness.
In May of 2016, Khrystal advocated alongside the FAST Movement (Families for the Acceleration of Spinal Muscular Atrophy Treatments) in a meeting with top FDA representatives for access to Spinraza, an SMA treatment in clinical trials at the time. Together with other FAST members, she asked the FDA to stop placebo trials, provide a means of access for the weakest SMA patients, accelerate the approval, and approve the treatment for all SMA patients regardless of age or type of SMA. In an interim look completed on August 1, 2016, the FDA found the treatment met trial objectives. An Expanded Access Program for SMA Type 1 patients commenced August 12, 2016, and the FDA approved Spinraza for children and adults with SMA on December 23, 2016. Khrystal is committed to improving health outcomes in those with rare diseases through improved access to rare disease treatments. She advocates for the expansion of newborn screening programs and insurance policies that conform to FDA labels for orphan drugs. She is a proponent of patient-driven access to rare disease treatments.
Khrystal holds a Juris Doctorate from Stetson University College of Law and is certified in Clinical Trial Design and Interpretation by Johns Hopkins through the Coursera program. She is a proud wife and mother of five who enjoys traveling the world with her family.
Vice President of Corporate Affairs & Patient Advocacy
Vice President of Corporate Affairs & Patient Advocacy
Cheya Pope is Vice President of Corporate Affairs & Patient Advocacy for Epizyme, where she is responsible for the company’s communications initiatives, including traditional and social media, product communications, corporate visibility and thought leadership activities, disease awareness initiatives, patient advocacy, internal communications, and corporate social responsibility efforts. Prior to joining Epizyme, Cheya held positions of increasing responsibility in Corporate Affairs and Patient Advocacy for companies including Intercept Pharmaceuticals, Sanofi Global Oncology, Genomic Health, and Genentech. In these roles, she led the outreach to global non-profit cancer and rare disease organizations and patient communities, and provided counsel to internal stakeholders on key advocacy issues. Cheya has dedicated her career to working in healthcare communications and patient advocacy, and she graduated Phi Beta Kappa from the University of California at Davis with a BA in English.
Jocelyn Duff is the Executive Director and Co-founder of CureCMT4J, an all-volunteer non-profit dedicated to expediting a treatment or cure for Charcot Marie Tooth Disease Type 4J (CMT4J). Jocelyn and her husband, John, founded CureCMT4J in June, 2016 after receiving a diagnosis of CMT4J for their daughter, Talia, following a six-year diagnostic odyssey. CMT4J is a severe, progressive, inherited neuromuscular disease often compared to ALS.
At present there is no treatment or cure. In its initial 18 months of operation, CureCMT4J gathered world experts in CMT4J/FIG4 and gene therapy, raised over $1 million, and funded pre-clinical
work at the Jackson Laboratory, establishing efficacy using gene therapy in CMT4J mouse models. A first-in-human gene therapy clinical trial is planned for 2020.
A physician assistant (PA) by training, Jocelyn has worked in Family Practice and Internal Medicine for over 20 years. Duff was a recipient of The Science Channel’s “Superheroes in Science” award, in June, 2017. Jocelyn was selected to speak at The Atlantic’s “Women in Science” symposium in Washington, D.C., discussing breakthroughs in science, and at Harvard’s 2018 “Precision Medicine” conference.
Jocelyn strives to connect other rare families with researchers and to assist them in expediting treatments. Jocelyn enjoys spending time outdoors with her husband and two amazing daughters.
Lisa Deck is a Founder & Director of Sisters@Heart, a non-profit organization that improves the lives of those affected by heart disease and stroke. Lisa is a former Go Red for Women National
Spokeswomen for the American Heart Association and currently serves as an Advocacy Board Member for the American Heart Association in Boston and Southern New England.
Suffering her first three strokes twenty years ago, Lisa has been a patient activist and international speaker for the past two decades. Lisa lobbies at the local, state and Federal level for health and awareness policy development . She is a widely known advocate voice that inspires others and raises awareness of heart disease, stroke and Moyamoya disease.
In 2015, Lisa was diagnosed with Moyamoya Disease, a rare cerebrovascular disease, after an 18-year diagnostic odyssey. She underwent two brain bypass surgeries to restore blood flow to her brain. Since then, Lisa has become actively involved in rare disease advocacy, serving as a Committee member of Rare New England. Rare New England brings together New England patients, families and providers touched by rare and complex disorders. On behalf of Rare New England, Lisa produces and hosts a local cable show, The World of Rare Disease. Lisa is also active with the newly formed Moyamoya Foundation. Lisa lives in North Attleboro, MA with her husband and two children.
Molly MacDonald knows what it’s like to battle the financial burdens of breast cancer while undergoing treatment to battle the disease.
Diagnosed with early stage breast cancer in April 2005, the disease was unlikely to take her life, but did take her livelihood. She was between jobs and was unable to start her new job as planned. Her family’s already tight budget was immediately overburdened with the addition of monthly COBRA health insurance payments coupled with the loss of her income. Within months, MacDonald and her family faced the potential for catastrophic financial losses, including the loss of their home. At the end of treatment when family and friends stopped delivering dinner, MacDonald was forced to use a local food bank to feed her family. When MacDonald’s quest to Get Help was met with blank stares, she became determined to Give Help to others suffering from lost income as a result of their diagnosis and treatment.
In 2006 she founded The Pink Fund, which provides 90 days of non-medical financial aid to cover basic cost of living expenses, such as health insurance, housing, transportation and utilities. By providing this financial bridge, The Pink Fund helps to meet basic needs, while decreasing stress levels. These factors improve treatment adherence, improving survivorship outcomes and quality of
life. Since its founding through October 2022 The Pink Fund has made over $6.4 million in bill payments on behalf of breast cancer survivors in active treatment.
In 2012, Ford Motor Company invited The Pink Fund to be one of their charity partners benefiting from the Warriors in Pink program which allowed them to serve patients in all 50 states. For her work, MacDonald has been the recipient of many local and national awards. Most recently she was named to the 2020 George H. W. Bush Points of Light Inspiration Honor Roll, Crain’s 2020
Notable Women in Health, and a 2020 AARP Purpose Prize Fellow. In 2019, EyeforPharma named her Patient Champion North America. In March 2018, MacDonald was awarded NAWBO Detroit’s Philanthropic Award and named a 2018 Healthcare Hero by Crain’s Detroit Business. Ernst & Young named her a Finalist for the EY Entrepreneur of the Year for Michigan and Northwest
Ohio in 2016 and 2017.
She is a 2014 Pink Power Mom, awarded by Kids II and Bright Starts, and a 2014 Purpose Prize Fellow, presented by Encore.org for her “outstanding contributions toward solving the world’s most challenging problems in the second half of life” and Money Magazine’s 2014 Michigan Money Hero.
A long-time columnist for Breast Cancer Wellness Magazine focusing on financial wellness, she is a contributing writer to the American Journal of Managed Care and a member of the Advisory Board for V-Bid, Value Based Insurance Design at The University of Michigan.
The Pink Fund was a finalist, recognized as a top global cancer innovator in patient centric care by the LIVESTRONG Foundation’s inaugural Big C Competition, for its work in helping to rebuild financial health. In 2014 and 2015 The Pink Fund was named by Time and Money, together with Charity Navigator, as one of five national breast cancer charities worthy of your donation, where
you can feel confident your dollars will be put to good use.
A passionate Patient Advocate, MacDonald is a thought leader in the breast cancer space, specifically in cancer related financial toxicity. She is a sought after keynote speaker sharing her personal struggles which led to the founding of The Pink Fund while advocating for improved patient care.
MacDonald is a graduate from The University of Michigan with a degree in journalism and has extensive work experience in journalism, public relations, marketing and sales. She is a Goldman Sachs Alumni Scholar, graduating in August 2022 from the program.
A mother of five adult children, and grandmother to two grandchildren, she is happily married to Tom Pettit, best known as Tom Terrific.
Jason Crites is the Founder/CEO of Assurance Health Data (AHD), a Chicago based health technology company that has created the trusted third-party health data platform and marketplace. After his father's aggressive late-stage prostate cancer and his nephew's rare Leigh's Syndrome diagnosis, Jason became obsessed with solving the problems researchers face in obtaining and sharing data. After 18 years at IBM where he was one of the creators of the federated data model and the global storage solution – closing over a billion in deals and optimizing the data infrastructure of many of the Fortune 500 – he founded AHD with the mission to make health data liquid.
Lesli joined Boehringer Ingelheim in 2022 as Senior Associate Director of Patient Centricity and Engagement where she, along with her PC&E colleagues and cross-functional partners, works to advance patient centricity and engagement best practices across the organization. At BI, she leads the Diversity and Inclusion Patient Council and is a member of the Health Equity team. Lesli previously led the Marketing and Communications team at the National Organization for Rare Disorders (NORD) where she served externally as a community engagement subject matter expert and was responsible for the evolution and execution for Rare Disease Day in the US. The latter included launching the award-winning #ShowYourStripes campaign that engaged millions of people globally while raising awareness for rare diseases. Lesli, a certified ScrumMaster (CSM), received her master's degree in management and institutional analysis from the School of International and Public Affairs (SIPA) at Columbia University in New York and her undergraduate degree from the University of Kentucky.
Ambre is a mom, advocate, and writer. She has written about her journey with chronic illness, feeding tubes, and home parenteral nutrition (HPN) on her blog, “Living with Dysautonomia.” She has received several WEGO Health Nominations, for both her blog, Living with Dys, and her work in advocacy.
Ambre has advocated for better education regarding both home enteral and parenteral nutrition (HPEN). She is a vocal advocate for more discussion, and dialogue of self esteem, and body image issues some struggle with within the chronic illness community. She is a fierce advocate of breaking the mold, and empowering others to see their worth and beauty. She has participated in photoshoots to help promote/encourage body positivity for those with medical devices, & chronic illness. She also strives to break the taboo blocks of mental health discussion in chronic illness. Her dedication, hope and motivation led her to create Chronically Strong, a program within Living With Dys. Where she will strive to give hope, encourage and empower others to see themselves beyond their diagnosis, and to have hope for a future.
Emmy award-winning journalist, international speaker, two-time cancer survivor and author of Becoming the Story: The Power of PREhab, Loriana Hernandez- Aldama is a powerhouse motivational speaker and gifted storyteller who inspires audiences and compels action with her 3P protocol to be possible. Bold, transparent and honest, Loriana has become a game-changer in the healthcare and wellness space by sharing what she discovered when the script was flipped and she went from network medical reporter to the other side of healthcare after a diagnosis of AML Leukemia in 2014.
Loriana’s made national headlines as she went from telling everyone’s story to “Becoming the Story” during that traumatic one year near-fatal battle with leukemia. The fight ripped her away from her then 2-year-old son, her high-level successful career unraveled and she suffered complications and loss at every turn...down to her own DNA. What Loriana gained were insights and a discovery of the most compelling story of her career: PREhabiliation matters.
On the 5th anniversary of surviving AML Leukemia and a life-saving bone marrow transplant, Loriana received the most unexpected gift — breast cancer. Once again, Loriana didn’t just beat the odds. She changed them. Today, as the founder of the non-profit, ArmorUp for LIFE, Loriana leverages her 20+ years of on-air experience and her personal journey overcoming two cancers to coach executives about the importance of prioritizing their own well-being. Additionally, she inspires others to reach their state of possible.
Loriana is a sought-after speaker who has addressed the FDA, served as keynote Mass BIO’s Hallmark Conference and inspired global sales teams at Fortune 500 companies like Pfizer to ArmorUp for Life. She has moderated panels with C-Suite executives on clinical trial diversity and co-authored several abstracts with researchers in the cancer space.
Above all, Loriana knows there’s no time like the present to Prepare, Present and Prevail® — her new book Becoming the Story: The Power of PREhab will inspire and empower you to do just that.
Sarah Krüg is the CEO of CANCER101, a patient advocacy organization, whose mission is to empower patients and their families to navigate their cancer care and partner with their healthcare team to make informed decisions. Sarah is also founder of the Health Collaboratory, a global innovation hub that's built on the foundation of advancing health equity, understanding the impact of behavior science, and cultivating trust by amplifying the voice of the patient, care partner and clinician in the co-design of the future of healthcare. The Health Collaboratory has launched various innovations such as Prescription to Learn®, a Health GPS, and the Patient Shark Tank®, among others that have been co-designed with patients. Through the Patient Shark Tank ®, over 25,000 patients and care partners across disease states have evaluated/partnered on innovations across the globe, including technology, education, research, and policy. The Health Collaboratory is comprised of a network of >300 subject matter experts.
Sarah is on the board and past president of the Society for Participatory Medicine, a patient: clinician member driven organization, whose mission is to enable collaborative partnerships between patients and healthcare professionals. She was also on the board of the National Organization for Rare Disorders. Sarah is the author of “A Roadmap to Wellness” with another book “Health Confessions” to launch in 1Q23. She is a global speaker and recently gave a TEDx talk called “The Patient: Doctor Tango”.
She previously held the position of Global Education Director, as well as Patient Advocacy Lead at Pfizer. She also established the Global Investigator Initiated Research Program at Pfizer. Prior to joining Pfizer, Sarah spearheaded the development of the Disease Management Clinical Pathways and conducted clinical research at Memorial Sloan- Kettering Cancer Center.
Paula has amassed her entire career in health care services helping families with rare disease, where her focus has been in neuromuscular disease. Before joining PTC, she spent 26 years in patient services at the Muscular Dystrophy Association (MDA). Her current role at PTC in Patient Engagement enables her to ensure families have a personal connection with PTC. She has developed an educational platform, called Insightful Moments, on behalf of patients and families ensuring they have access to education and support.
John is passionate about empowering patient communities to become active participants at every stage of the clinical trial process. In his role, John will lead and scale out our DCT solutions and design the operational capabilities necessary to successfully deliver clinical trials of the future to achieve top-line revenue growth. Working in collaboration with leaders within digital, operations, product, strategy and commercial, as well as external partners, he will be responsible for developing and implementing a robust, scalable strategy for the execution of DCT trials – a core service line of Walgreens clinical trials business.
John has spent over a decade working at the intersection of clinical research and patient advocacy. Prior to joining Walgreens, John was a member of the leadership team at Casimir, a Contract Research Organization focused on the development and delivery of novel outcome measures in decentralized clinical trials. At Casimir, John was head of business development and study operations, delivering over 40 decentralized and hybrid studies in over 25 countries. John is focused on using novel approaches to increase access, equity and diversity in clinical trials and to improve the meaningfulness of clinical trial data. Prior to Casimir, John worked to engage the patient voice in the clinical trial process as the head of communications for the Jett Foundation, a nonprofit dedicated to funding research and programs for Duchenne muscular dystrophy.
John holds a bachelor’s degree in government and English from Colby College. He is an accomplished author and 2014 Jeopardy! champion.
Juliette is a Director & Global Evidence and Outcomes Leader at Takeda Pharmaceuticals. She is an evidence strategist and patient-centric developer, with extensive experience in leading patient-focused research (e.g., clinical outcome assessment [COA], real-world evidence [RWE]) in the interventional and observational settings across all stages. She also has taken many efforts to apply digital-empowered development: e.g., fully decentralized clinical study with digital devices for patient monitoring and identifying potential digital biomarkers, AI-enhanced digital assistant for integrated patient support.
Maimah Karmo is the Founder/CEO of the Tigerlily Foundation and a sixteen-year survivor of triple negative breast cancer. Tigerlily Foundation has launched national and global health initiatives and provided breast health, educational, empowerment, wellness and transformational programs focused on ending disparities age, stage and color for black women in our lifetime.. Maimah has advocated with Members of Congress to pass legislation, worked with the CDC to launch national campaigns, and has been featured in numerous magazines and TV shows including the Oprah Winfrey show and USA Today. Most dear to her heart is her 19-year-old daughter, Noelle.
Mike Davis is Head of Global Epilepsy at UCB. For more than 30 years, UCB has focused on discovering and developing solutions that have helped transform the epilepsy treatment landscape and improved the lives of millions of people. Today, UCB’s commitment to the epilepsy community has never been stronger.
In his role Mike oversees the Epilepsy and Rare Syndromes organization at UCB, working to enable global access to our leading portfolio of medicines for the treatment of seizures associated with epilepsy and developmental epileptic encephalopathies. UCB is also working to develop transformative innovations that change how patients live with their condition. These innovations could lead to new treatment options that address specific unmet needs and, one day, even impact the underlying causes of epilepsy
Prior to his current role, Mike led UCB’s U.S. Neurology business overseeing a team responsible for a portfolio of epilepsy and Parkinson’s products, which have impacted the lives of nearly 500,000 patients. Before his role as head of U.S. Neurology, Mike was a key force behind the creation of UCB’s Seizure Freedom Mission, as well as serving as Vice President for the patient solutions team in the Asia Pacific region (APAC), based in Shanghai, China. In this role he delivered significant growth across multiple and complex geographies while redesigning UCB’s approach in the region.
Mike first joined UCB in 2007 as part of the Schwarz Pharma acquisition, following which he headed up the launch team for Neupro® in the U.S., and eventually moved to Global CNS Marketing Group Director in Belgium where he was responsible for re-establishing the Neupro brand and accelerating growth across the EU.
Prior to joining Schwarz Pharma, Mike spent a decade at Forest Laboratories where he was directly involved in several launches, including three of the company’s most successful products in depression and Alzheimer’s. In his early career, Mike worked in basic science as a bench scientist in both clinical and commercial-based labs. He has a Bachelor of Science degree from Sienna College and an MBA from Adelphi University.
Currently, Mike serves as a Board Member for both U-PAC and Engage Therapeutics and lives outside Atlanta, Georgia, with his wife, Maureen, and their two sons.
Andrea Furia-Helms is the Director of the Patient Affairs Staff in the Office of Clinical Policy and Programs, Office of the Commissioner. In her role, she collaborates with patient communities, the FDA medical product Centers and other offices to incorporate patient and caregiver perspectives in cross-cutting regulatory meetings. Ms. Furia-Helms spent over ten years in the FDA’s Office of Health and Constituent Affairs where she directed the FDA Patient Representative Program and coordinated patient engagement activities for the agency.
Prior to FDA, Ms. Furia-Helms was Director of the Back to Sleep (now Safe to Sleep) campaign, a public-private partnership to educate communities on Sudden Infant Death Syndrome (SIDS), at the National Institutes of Health. She developed SIDS outreach initiatives for African American, American Indian and Latino communities.
Ms. Furia-Helms has a B.A. in psychology from Framingham State University, a B.S. degree in community health education from University of Maryland, and a Master of Public Health degree from The George Washington University.
Jodie Gillon is currently the SVP of Corporate Affairs & Patient Advocacy, responsible for relationships with external stakeholders and communications. Jodie has built and leads platform functions such as Patient Advocacy, Stakeholder Engagement, Medical Education, Grants & Sponsorships, Medical, External & Internal Communications, Congress & Event Management, Compassionate Use and Medical Information. Most recently Jodie served as the Chief Patient Officer and Head of Corporate and Medical Affairs at Abeona Therapeutics, a cell and gene therapy company.
Jodie started her career in Advocacy, Hospitals and Government and transitioned to industry over two decades ago holding various roles across Development, Medical & Corporate Affairs. Prior to joining Abeona, Jodie cumulatively spent over a decade with Pfizer as the Global Medical Lead, Patient Engagement, for the Rare Diseases Business Unit and the Director, Medical Communications, within the Chief Medical Office. She served as a core member on all Medical, Commercial, Launch, Global and Regional Leadership Teams ensuring the patient voice drove strategy and facilitated collaborations with Patient Groups.
Prior to Pfizer, Jodie was the Head of Patient Advocacy and Professional Affairs with Achillion Pharmaceuticals where she led Policy, Alliances, Patient Engagement, Contributions/Grants, Compassionate Use, Medical Information, Medical Communications, Field Medical, and External Affairs. Previously she served as the Head of the Chief Medical Office (CMO) of AstraZeneca where she managed Patient Engagement, Compassionate Use, Trial and Payment Transparency, Meetings and Events, an HCP Engagement Center, Company wide policy, External contributions, Alliances, and Crisis management.
Jodie held additional roles as the Global Communications lead at Novartis, Director of Medical Education for Oridion Medical and as a Health Economist with the Israeli Center for Disease Control and Ministry of Health. She holds a Master’s of Public Health with a dual degree in Health Economics and Epidemiology from Hebrew University in Jerusalem and a BSFS from Georgetown’s School of Foreign Service. She currently serves on several industrywide Boards & Committees, has published and spoken externally across a wide variety of topics and mentors students and female professionals across our industry.
Charlie is Chief Medical Officer, Adaptic Health, accelerating treatments through better clinical trial design. He is also Managing Director, Pivotal Strategic Consulting, advising a portfolio of companies improving healthcare and drug development. Recently, as Chief Science Officer, Academy of Managed Care, he led research for a coalition of pharma companies in comparative safety and efficacy of biologics and biosimilars using FDA’s Sentinel Network. Previously Charlie had leadership roles in the biotech and pharmaceutical industry (Pfizer, Roche and Genentech) overseeing therapeutic and cross-portfolio groups in clinical development, medical affairs, clinical trials, health economics and outcomes research, data management, biostatistics, epidemiology and data science. At Genentech, he was Group Medical Director and led three groups (Patient Registries, Evidence Science and Innovation, Strategy and External Relationships, Evidence for Access). Charlie Barr is board-certified in Internal Medicine and began his career as an academic faculty doing teaching, clinical practice and research.
Keri Yale, MBA, is the Head, Patient Affairs & Engagement for Boehringer Ingelheim Pharmaceuticals (BI). In this capacity she leads a Center of Excellence that focuses on fueling a patient-centric culture alongside advancing the science of patient input and measuring the impact of patient engagement to develop best practices and standards for patient engagement at BI. Keri has 30 years of experience within the pharmaceutical industry, 25 of which have been in patient advocacy. Keri began her patient-focused career when she joined BI to serve as a liaison between HIV/AIDS activists and the company, expanding the role as she created an HIV Community Affairs team. Working shoulder to shoulder in partnership with the activists and those impacted by the HIV/AIDS epidemic, Keri learned about the value and the ways of patient engagement before the practice was formally established in pharma. After 15 years serving patients living with HIV, Keri saw a need for a centralized function for patient advocacy and professional medical associations at BI and became a founding member of the Patient Advocacy and Professional Relations team. Branching out to new therapeutic areas, she has gained global and U.S. experience in diseases such as HCV, psoriasis, lupus nephritis, Crohn’s, ulcerative colitis and cystic fibrosis. Keri earned her bachelor’s degree in business from the University of San Diego and an MBA from Pepperdine University. After many years in the Southwest, Keri now enjoys experiencing all four seasons living in the North Chicago suburbs with her family.
Craig Martin joined Global Genes as CEO in October 2020. His history with the organization goes back more than a decade -- including five years as chair of the organization’s Corporate Alliance and more than five years on the board of directors. He is also President of Rithm Health, a firm he founded in 2018 to provide fractional executive services and strategy, business development, partnering and communications counsel for growth companies in biotech and health technology.
Craig’s background includes nearly three decades of experience in consulting across health, life sciences, technology and healthcare markets, working with industry, providers, patient groups, and government institutions. He has worked extensively over the past two decades in rare diseases and precision medicine.
Craig was previously a Global Principal for Biotech and Health Technology with Ogilvy Consulting, based in Cambridge and New York. Prior to that, Craig served as CEO of Ogilvy’s Feinstein Kean Healthcare, a specialized consultancy focused on biotech, technology and related fields. He’s held leadership positions with health and life-science focused businesses based in Cambridge, Washington, D.C., New York and Brussels.
He also serves on the board of the Fibrolamellar Cancer Foundation, and is a co-Founder and board member of RARE-X. He is a frequent commentator and panelist on key issues impacting innovation in rare disease.
In November of 2012, Monica's twin son, Beckett, was the first to be diagnosed at Texas Children's Genetics Clinic with the gene mutation SYNGAP1. When Beckett was 4 months old, we noticed he was not meeting the same milestones as his twin sister. We then began a journey to find answers to help our son. She began to blog about his progress & this led to building a community of parents & caregivers & a strong support group. She is the Founder, President/CEO SYNGAP1 Foundation. SYNGAP1 is the top single gene mutation linked to Autism in the world and linked to many other neurological conditions, such as Intellectual Disability, Epilepsy and Schizophrenia.
She retired in 2016 after 23 years in education teaching secondary science. Her new focus is on building the programs & mission of the Foundation. She is the Primary Investigator on the SYNGAP1 (MRD5) Registry & Natural History Study, the largest in the world. She is a life member of the Worldwide Association of Female Professionals, DIA 2016 Patient Scholar, a member of the first-class of 2017 Illumina Ambassadors established in the United States and a member of Women in Bio – Capital DC and Texas Chapters.
In addition to leading the foundation, she is an author, public speaker, consultant on rare disease business strategies & advocates for rare disease legislation at both the federal & state levels. Several of her authored scientific publications include Nature Neuroscience, The Journal of Neurodevelopmental Disorders, The Journal of Pediatrics and Value in Health Journal. She has authored a book about her son She currently is a Northwestern University Pritzker Law School candidate earning her master of science law with a concentration in Health Law and graduating Fall 2022.
Director, Patient Advocacy and Strategic Alliances
Director, Patient Advocacy and Strategic Alliances
Brian has 20 years of pharmacy plan management and retail pharmacy management experience, including activities in specialty drug management, influencing pharmaceutical policy and regulations, advocating for biosimilars, consulting and teaching. Prior to joining Sandoz, Brian held several pharmacy management roles across various organizations, including manager of public policy at Humana, manager of the prescription drug program and policy at the Ohio Public Employees Retirement System, director of pharmacy benefits at the Ohio State University (OSU) Health Plan and pharmacy team leader at Target Pharmacy.
Brian has served as a clinical assistant professor at the OSU College of Pharmacy and is currently serving as an adjunct professor. He holds a Bachelor of Science degree in Pharmacy from Ohio State University, a Master of Business Administration from Franklin University and a Master of Health Administration from OSU.
Director, Patient Engagement and Strategic Alliances
Director, Patient Engagement and Strategic Alliances
Deedar Singh is the Director of Patient Engagement and Strategic Alliances at Sandoz who leads relationships with patient advocacy groups, professional organizations and drives patient centricity within drug development.
Deedar is proficient in multiple therapeutic areas and has over 10 years of diverse experience in patient advocacy and engagement, health care delivery, medical strategy, clinical operations, and regulatory affairs. Prior to joining Sandoz, Deedar has held several management roles in various organizations including patient engagement and medical strategy at Janssen, global regulatory compliance at Johnson & Johnson Consumer Inc., specialty infusion pharmacy operations at Option Care, and retail pharmacy operations at Walgreens.
Deedar has a PharmD from Massachusetts College of Pharmacy and Health Sciences. He is a registered pharmacist in New York and New Jersey. In his spare time, he enjoys traveling, basketball and playing harmonium and tabla (Punjabi instruments). He lives in Long Island, NY.
Dina Matos joined CARES Foundation, a not-for-profit organization dedicated to serving the needs of individuals affected by congenital adrenal hyperplasia (CAH) worldwide, as Executive Director in 2009. CAH is a group of inherited disorders that affects the adrenal glands. In its severest form, it is a life-threatening disorder.
During her tenure, CARES completed its first strategic planning initiative, rebranded company website and marketing program, published guidelines for the development of centers of excellence for congenital adrenal hyperplasia designated eight centers of excellence across the United States, collaborated in the development of CAHtalog-a CAH registry, and supported the development of the PACE (Preventing Adrenal Crisis Events) app. Education, research and awareness remain a top priority for Dina. Under her leadership, CARES has significantly expanded its support network, increased educational opportunities, intensified research initiatives, increased advocacy for EMS protocols and treatment options, and initiated awareness walks across the country. She is also a founding member of CAH International.
Her concentration in the health care industry spans more than three decades, working in hospitals where she developed health and wellness programs for seniors and women. Dina’s interest in health care extends beyond her professional career. She has additionally volunteered with many health care organizations and institutions, often in a leadership capacity, including the Emmanuel Cancer Foundation, Cancer Institute of New Jersey, March of Dimes, Bernard W. Gimple Multiple Sclerosis Comprehensive Care Center, Women’s Heart Foundation, CJ Foundation for SIDS, Northern New Jersey Maternal/Child Health Consortium, as well as many non-healthcare related causes.
Dina’s contributions to these causes have earned her numerous prestigious awards and recognitions such as, City of Hope “Woman of the Year’, Cancer Institute of New Jersey’s “Award of Hope” and more.
Dina lives in New Jersey with her family.
Nélio Drumond is a PharmD by training with a PhD in Patient Centric Drug Product Design. He shares several years of experience in the Pharmaceutical Industry, providing scientific leadership to govern formulation and manufacturing strategies for drug product development programs during clinical stages, including their scalability and validation for commercial use. Nélio has spent the last 2 years overseeing Takeda’s external commercial manufacturing portfolio within the EMEA region and has recently joined the Global Manufacturing Sciences group in Cambridge, MA to support launch and commercialization of promising NCE’s from clinical programs. Dr. Drumond is a strong advocate for patient centric drug product design and is regularly invited to speak at various international conferences.
Julie Breneiser is the Executive Director of the Gorlin Syndrome Alliance (GSA). Prior to her position as director, Julie served as volunteer Board President for the GSA. Julie and her two young adult children are affected with Gorlin syndrome, a rare genetic disorder caused by a tumor suppressant mutation that can affect every organ system. Her early career began as a Physician Assistant followed by teaching preschoolers with disabilities.
The work that Julie does with the GSA focuses on collaboration with industry to bring new and/or potential treatments to clinical trial. She also provides individual support to affected patients and their caregivers along with educating health care providers about this rare disease. In November of 2021, Julie was honored with an appointment to the Patient Engagement Collaborative at the FDA. This group of patients and advocates works to achieve more meaningful patient engagement in medical product development and other regulatory discussions at the FDA. Julie previously served as a consumer reviewer for the National Institutes of Health and the Department of Defense’s Congressionally Directed Medical Research Program. She speaks nationally and internationally raising awareness about Gorlin syndrome.
Matthew Zachary defines himself as a Health Experience Officer. With a 20+ year career in advertising, marketing, nonprofit management, digital health, public policy, life sciences, and broadcast media, he is passionate about putting the patient at the center of every conversation.
Why? Because he is one.
Diagnosed as a college senior with brain cancer, Matthew wasn't sure he'd make his next birthday. That was 27 years ago.
As one of the industry's most respected, influential, and visionary voices, Matthew has been called "The Podfather," "The
Howard Stern," and "The People's Voice" in healthcare. And as the Founder of the award-winning nonprofit organization
Stupid Cancer, he birthed the Young Adult Cancer Movement, which improved the lives of millions of patients in their
teens, 20s, and 30s.
Matthew has been profiled by The CBS Evening News, TIME Magazine, People Magazine, Newsweek, STAT, The New
York Times, The Wall Street Journal, The Washington Post, The Atlantic, MTV, and others.
Currently, he is the CEO and Co-Founder of OffScrip Health—a leading digital health media platform—where he hosts
"Out of Patients with Matthew Zachary," one of the most prestigious, influential, and coveted interview shows in the
sector and a TOP-10 healthcare podcast.
He lives with his wife and twins in Brooklyn, NY.
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