Wes Burian

PAC Member

Wes Burian is a film art director and visual effects artist whose career spans work at Tippett Studio and
over 15 years at DreamWorks Animation. He contributed to films including Men in Black II, Blade II, The
Haunting, Shark Tale, Monsters vs. Aliens, and the Kung Fu Panda trilogy, where he served as an Artistic
Department Head designing character and environment looks. Alongside his studio career, Wes has
shared his expertise through Master’s-level teaching, international conferences, and community-based
kids’ art programs.

Living with Fabry disease, a rare genetic disorder, Wes has received enzyme replacement therapy since
2003 and recently completed a gene therapy clinical trial. His personal experience with chronic illness has
fueled his dedication to patient advocacy and research. He has served on Patient Advisory Boards,
contributed to CTTI’s Clinical Trials Flexibility Project, and engaged in legislative advocacy to advance rare
disease initiatives.

In 2022, Wes was honored with the EveryLife Foundation’s RARE Artist Award for his artwork Sprout,
which has been featured widely as a creative expression of living with Fabry disease.

Wes is eager to join Accessia Health’s Patient Advisory Committee because he believes his lived
experience, creative skills, and advocacy background can help amplify patient voices, guide support
programs, and ensure that assistance reaches those facing both medical and financial challenges. He
aligns deeply with Accessia’s mission and is committed to strengthening resources that improve the lives
of people navigating rare and chronic conditions.

LaTonya Burnett

PAC Member

LaTonya is a proud mother and grandmother, a local public school administrator, and an adjunct professor of psychology at the collegiate level. Her career has been dedicated to education, both in supporting students and in advancing her own learning. She is currently pursuing a second master’s degree in Educational Leadership to strengthen her ability to serve communities through leadership, policy, and advocacy.

She was inspired to join the Patient Advocacy Committee from a growing interest in research and policy that directly affect patient care. She believe patients deserve a strong “voice” in the planning, development, and implementation of healthcare practices. Too often, decisions are made without the full perspective of those who are most impacted, and she sees advocacy as a way to close that gap.

Through her involvement, LaTonya hope to bring forward what she calls “actionable awareness” not just raising issues, but helping turn those concerns into meaningful changes that improve patient experiences and outcomes. Her background in education has given me a deep appreciation for empathy, communication, and ensuring equity in access and support. She aim to apply those same values here, helping to elevate the needs and voices of patients so their care is not only effective, but also respectful and human-centered.

Cheryl Cooney

PAC Member

Cheryl is a passionate healthcare advocate inspired by her own experiences living with a rare autoimmune disease (HAE) and undergoing treatment for non-Hodgkin’s lymphoma. With a background in dentistry, she has witnessed firsthand how many individuals struggle to access essential care and believes oral health is a vital part of overall well-being—especially for those whose health has been impacted by treatments such as chemotherapy.

Dedicated to breaking down barriers, Cheryl is committed to supporting and advocating for patients who may not be able to advocate for themselves. Her mission is to ensure that others have access to the care and resources they need, and to serve as a voice for those navigating complex health challenges.

Marcie Coward

PAC Member

Marcie Coward was inspired to join the Patient Advocacy Committee because she believes in the importance of individuals learning to advocate for themselves. After navigating a healthcare system that did not always meet her needs, Marcie developed the skills to speak up and encourage healthcare professionals to be more sensitive and informed about her rare disease.

Through her role on the committee, Marcie hopes to raise awareness and empower others to better understand their health information, navigate treatment options, and effectively communicate their wishes with providers. Her goal is to equip patients with the tools and confidence to become their own strongest advocates.

Erin Hoch

PAC Member

Erin Hoch is a dedicated advocate for disability awareness and accessibility, inspired by her role as a mother to a son living with Infantile Pompe Disease. Residing in the Flathead Valley of Montana with her spouse, Erin is passionate about creating meaningful change within her community and beyond.

With a commitment to amplifying the voices of those directly impacted, Erin embodies the belief that “Nothing about us, without us.” She is honored to serve as a voice for change and strives to advance inclusion, accessibility, and understanding in all areas of life.

Tara Keith

PAC Member

Tara is a devoted wife, mother, and grandmother who approaches life with enthusiasm and resilience. Diagnosed with indolent systemic mastocytosis (ISM) in her late twenties—after nearly a decade of undiagnosed symptoms—she has faced the challenges of navigating a rare disease with limited resources and specialized care. A turning point came in 1999, when the emergence of cutaneous mastocytosis led to a bone marrow biopsy and a confirmed diagnosis.

With specialized treatment unavailable in Louisiana, Tara has had to travel out of state for care, an experience that has deepened her commitment to helping others in similar circumstances. She is passionate about using her personal journey to offer hope, guidance, and practical support to fellow patients, easing the burdens that she herself endured.

Honored to contribute her voice and experience, Tara is dedicated to advancing meaningful support for individuals navigating their own complex health journeys.

Angela Kotarski

PAC Member

Angela was inspired to join the Patient Advocacy Committee at Accessia Health by the belief that no one should have to choose between their health and financial stability. She is committed to being part of the solution—helping ensure that financial barriers never stand in the way of healing and access to care.

With more than a decade of experience as a professional patient advocate, Angela has worked across specialty pharmacy, the pharmaceutical industry, and the nonprofit sector, while also dedicating her time to volunteer efforts. She looks forward to contributing both her personal and professional experiences to support patients seeking assistance through Accessia Health.

Casey Mescher

PAC Member

Casey is a devoted mother of twin 12-year-olds whose early arrival and weeks in the NICU introduced her and her husband to the vital role of advocacy in healthcare. That experience gave her firsthand insight into the challenges families face and the importance of having a strong voice within the medical system.

Professionally, Casey is a people-focused leader dedicated to recognizing the strengths of her team and ensuring they have the tools and support needed to thrive. The skills she has developed throughout her career, combined with the lessons learned during her children’s early health journey, have shaped her belief that advocacy is essential to improving healthcare outcomes.

As a member of the Patient Advocacy Committee, Casey is committed to helping individuals and families find their voice, access critical resources, and feel empowered as they navigate their own healthcare journeys.

Ashley Moncrief

PAC Member

Ashley Moncrief brings over a decade of oncology nursing and research experience to her role on the Patient Advocacy Committee, where she represents the Myelodysplastic Syndromes (MDS) Foundation. Since beginning her career in 2012, Ashley has worked as an infusion nurse in an outpatient oncology clinic, on an inpatient myelosuppression/SCT floor, and as a Research Nurse Specialist overseeing Phase I, II, and III malignant hematology trials. She later served as Manager of Research Projects for Malignant Hematology, Cellular Therapy and Toxicity, and Plasma-Cell Lymphoma at an MDS Center of Excellence.

In 2023, Ashley became Director of Patient Care at the MDS Foundation, where her work has centered on strengthening patient advocacy through data-driven initiatives, patient surveys, and clinical trial awareness. She has also led efforts to develop resources that empower patients, caregivers, and healthcare professionals to better navigate MDS.

Through her role on the Patient Advocacy Committee, Ashley is dedicated to expanding this mission—improving the lives of those affected by MDS and ensuring that patients everywhere have access to the knowledge, resources, and support needed to confidently navigate their healthcare journey.

Michelle Teng

PAC Member

Michelle Teng a committed patient advocate living with MPS I Scheie syndrome. Diagnosed nearly 10 years ago, she have experienced the challenges of managing a rare condition firsthand and have benefitted from patient assistance through Accessia Health. This support has inspired Michelle to give back by volunteering as part of the Patient Advocacy Committee (PAC).

Through this role, Michelle is dedicated to amplifying patient voices, improving access to care, and ensuring that programs and services truly reflect the needs of those living with rare and chronic conditions. By sharing her perspective as a patient, Michelle hopes to help improve the overall patient experience and influence better outcomes for the rare disease community.

Lowell Thompson

PAC Member

Lowell became a patient advocate through lived experience, after years of ICU stays and repeated near-death events forced him to take charge of his own healthcare journey. With little guidance from the medical system, he turned to medical literature, connected with research directors, and traveled across the country to uncover answers—ultimately identifying the root of his illness and developing a treatment plan that resolved years of uncertainty in just months. This journey ignited his passion for advocacy and gave him firsthand insight into the importance of persistence, curiosity, and community when navigating healthcare.

Professionally, Lowell has led and co-founded ventures in technology, AI, and data privacy. He is also the host of Learning with Lowell, a podcast featuring more than 250 founders, researchers, and operators whose companies have collectively raised over $100M. His current projects include building community through TEDxLakeGeneva and connecting leaders across the Midwest innovation ecosystem.

As a member of the Patient Advocacy Committee, Lowell is committed to channeling both his personal journey and professional expertise to empower patients, amplify their voices, and help ensure that breakthroughs in research and care translate into meaningful improvements in people’s lives. His ultimate goal is to make sure no one feels as alone in their healthcare journey as he once did.

Amanda Thorsen

PAC Member

Amanda is a passionate advocate for individuals living with rare and chronic diseases, a commitment shaped by her own experiences with Hereditary Angioedema. Having faced ongoing challenges in accessing proper healthcare and obtaining life-saving medications, she has developed a deep understanding of the barriers patients encounter.

Over the years, Amanda has gained valuable insight while navigating these obstacles and is dedicated to using that knowledge to support others. She is excited to collaborate with fellow advocates to identify shared challenges and develop practical, realistic solutions that can drive meaningful change in the lives of patients and their families.