Meet the dedicated individuals who guide our initiatives and advocacy efforts
Our Patient Advisory Committee consists of individuals with personal connections to ApoE4-related Alzheimer's disease. They provide invaluable insights and guidance to ensure our advocacy efforts truly represent the needs of patients and caregivers.
I became interested in learning more about Alzheimer's Disease when my older sister was diagnosed with early onset AD in her 50's. Over the past decade I have seen how this horrible disease has impacted my brilliant, talented sister and those that love her. After I learned she was APOE4 homozygous, I wanted to better understand what my risk profile was and how I could potentially mitigate that risk. I became involved with the ApoE4 Alzheimer's Alliance to help raise awareness and advocate for more research into prevention and treatment options for those with the ApoE4 gene variant.
As an APOE4 carrier with a long family history of Alzheimer's disease, engaging with the community and advocating for better treatment options and outcomes for APOE4 carriers is extremely personal for me. Fortunately, I am currently symptom-free, but I watched my grandmother, mother, and her 2 brothers struggle with and succumb to Alzheimer's disease. My 11 first cousins, 2 siblings and their children are at high risk for continuing this devastating trend. I recently sold my business, and with my semi-retired schedule, I'm able to participate in clinical research and devote time learning about promising drug and lifestyle treatments. I am honored to have the opportunity to work with the APOE4 Alzheimer's Alliance, and I'm hopeful that we will bring awareness and action to the specific needs of APOE4 carriers.
I'm a rare APOE-2/4 heterozygote who participated in the TrailRunner ALZ-2 trial in 2023. I experienced ARIA and other adverse side-effects. Background: BSN from Penn, MSN/MPH from Drexel, DrPH from UNC Chapel Hill. My research focuses on health disparities in neurodegenerative diseases. Having worked on both the clinical and research sides of Alzheimer's, I bring a unique perspective to the committee. My personal experience in clinical trials has strengthened my commitment to patient safety and ethical research practices.
Dr. Wendy Nelson is a biotech executive with over 28 years of experience in roles spanning business development, corporate development, project management, operations, and R&D. Her experience includes tenures at Alkermes, Alantos Pharmaceuticals, several preclinical and early stage clinical CROs, as CEO at LeadingBiotech, CBO at Danforth Advisors and is currently a Managing Partner at Dreavent Capital. Wendy Nelson, PhD, is also President & Founder of the Boston Biotech Forum, a series of highly curated events that consist of networking and panel discussions on relevant industry topics. Wendy founded the Forum in Boston in 2011 and has since expanded to San Francisco, San Diego, Philadelphia and New Haven. The network consists of over 2000 biopharma executives and investors from more than 600 biopharma companies and 90 VC firms. Wendy serves on the Board of Directors for SciSure, as a Business Advisor to ModernVivo, is a Venture Partner for Waterman Ventures, and is on the Patient Lived Experiences congressional advisory board for UsAgainstAlzheimers. Wendy is 17 years into caring for her mother and now father with Alzheimer's disease and carries two variants of APOE4 herself. Dr. Nelson earned her MS in Engineering and PhD in Medical Sciences (Artificial Organs, Biomaterials & Cellular Technology), both from Brown University. In her free time, Wendy competes in triathlons and enjoys climbing mountains.
Jamie Tyrone, RN, is a dedicated advocate for Alzheimer's research, motivated by her genetic status as a homozygous carrier of the ApoE 4 allele and a multi-generational family history of AD. A former Registered Nurse turned marketing executive, she became a full-time advocate, founding B.A.B.E.S. (Beating Alzheimer's by Embracing Science) and contributing to WomenAgainstAlzheimer's, working to amplify women's voices in the fight against Alzheimer's. She has played key roles in various research initiatives, including the Multi-Regional Clinical Trials Center and the development of the "Individual Return of Results" (IRR) guidance and tools. Jamie is also an advisor to the international CEO initiative (CEOi), a leading global effort to prepare for the widespread adoption of Alzheimer's blood-based biomarker (BBM) tests into clinical practice. Additionally, Jamie serves as co-chair of the Stakeholder Committee of AGREEDementia (Advisory Group on Risk Education for Dementia), leading to co-authorship of "Disclosing Individual Results in Dementia Research: A Proposed Study Participant's Bill of Rights", published in the Journal of Alzheimer's Disease. She co-authored the award-winning book with Dr. Marwan Sabbagh, Fighting for My Life: How to Thrive in the Shadow of Alzheimer's, and has received the National George Washington Honor Medal for her contributions. Additionally, she has been a research participant for 15 years, hoping her contribution will aid in finding a prevention or cure for Alzheimer's.
Julie McEntire found out about her APOE status like some many others, by casually taking a 23andme DNA test. The news was shocking and upsetting but spurred Julie to get involved in research and advocacy to help find a solution to this devastating problem. Julie has over 15 years of experience working in the environmental field. Julie is currently the Director of Grant Programs at the Texas General Land Office. In this role, Julie oversees the Texas Coastal Management Program and the Coastal Erosion Planning and Response Act program. After her mother's diagnosis with Alzheimer's and subsequent genetic testing revealed their family's ApoE4 connection, Julie became active in advocacy work. She specializes in helping families navigate the complex healthcare system and access support services.
As an individual with the APOE E4/4 genotype, I have joined the ApoE4 Alzheimer's Alliance to advocate for awareness and research concerning Alzheimer's disease. Having witnessed both of my parents suffer from this devastating condition, I understand the profound impact it has not only on patients but also on their families. Additionally, with my sisters carrying different variants (3/4 and 3/3), our family has experienced the varied consequences of genetic predisposition to Alzheimer's. Joining this alliance allows me to connect with others affected by similar challenges and to contribute to efforts aimed at finding effective treatments and ultimately a cure for Alzheimer's disease.