One Rare Board

Jenn is a trusted voice in the rare disease community, as a mother, public speaker and fierce advocate. Her work in the rare disease space as a thought leader earned her the Ryan’s Quest Ryan’s Hero award in 2013, a nomination for the Global Genes Champion of Hope award in 2014, and the prestigious 2017 Meyer- Whalley instrument of change award. Formerly as the director of outreach and advocacy at a Massachusetts based non-profit foundation, she was responsible for the organization of the largest FDA advisory committee hearing in history, with over 1000 Duchenne Muscular Dystrophy (DMD) advocates, families, clinicians and researchers in attendance.  There are currently only two drugs approved for DMD, Exondys51 and Emflaza, though in various roles, Jenn was involved in the approval process for both. Currently, Jenn is consulting in the biotechnology space with a focus on caregiver & patient engagement.

Lori has over 20 years experience in biotechnology in the areas of patient advocacy, clinical operations and genetics, Lori has worked with patient advocacy groups to provide innovative educational programs, community workshops, and genetic testing programs. She has also been a Cystic Fibrosis (CF) Great Strides fundraiser for over 18 years to support the Cystic Fibrosis Foundation and individuals with CF, including her 2 cousins, to help make CF stand for “Cure Found”. Lori recently became a member of the Massachusetts (MA) Rare Action Network (RAN), speaking to MA legislators about important rare disease initiatives, including a rare disease advocacy council. Lori received her undergraduate degree in Biology at Providence College, and a Masters degree in Human Genetic at Sarah Lawrence College. She also enjoys visiting the beach, yoga, and spending time with her nieces.

With more than 30 years of expertise in the clinical research industry, Joan has implemented a variety of

senior leadership strategies and functions within the organizations she has worked for. She is a

seasoned executive with strong leadership skills in team management, strategic business and financial

planning, integrated marketing, communications, and educational initiatives.

Joan presently holds positions of responsibility across various esteemed organizations in the

pharmaceutical industry. She is an active member of the Executive Steering Committee for the

PharmaTimes Clinical Researcher of the Year program, serves on the Advisory Board of the

Pharmaceutical Business Conference Group (PBC Group), and contributes her expertise as a respected

judge in the Citeline Awards annual event. Additionally, she has contributed her leadership and insights

as a board member for Greater Gift, Biobridges, and CISCRP.

Richie is a health policy professional by training, clinical researcher by trade, and patient advisor by necessity. Richie is intensely passionate about reducing the time it takes to bring promising new therapeutics and diagnostics to market. Over the last 12 years, he has tackled this challenge head on at health technology companies, contract research organizations, and clinical research sites. In his current role, Richie serves as Senior Director of Patient Success at Medable, laser focused on the patient experience. A clinical trial participant himself as well as a rare disease patient impacted by Wolfram-like syndrome, he joined One Rare to better support young adults impacted by rare disease.  

Mike is an educator, a biotech professional, and a survivor.  Formerly a high school science teacher, his industry work has supported the advancement of frontiers in regenerative medicine, small molecule drug development, medical devices, and gene therapy treatment, for indications including blindness, paralysis, neuro-degenerative disease, and rare diseases - especially Duchenne.  While planning a career path from research into clinical trial operations, he unexpectedly became a patient in a clinical trial for another rare disease, Hodgkin lymphoma. After 14 months of medical leave, Mike returned to industry with critical insights into the patient experience and a renewed sense of purpose to improve quality of life for patients and their families. He believes that the relationship between patients and researchers is powerfully symbiotic, & will improve the human condition.    

 Christa Martens has worked in patient-centered research, implementation, and application for the past decade. Her background is rooted in public health, patient-reported outcomes, and identifying opportunities to leverage a patient's voice in their own health care. She's currently a Project Management Lead at Medable, a company committed to decentralizing clinical trials in order to get effective therapies to patients faster. 

Jim Sliney Jr is a registered medical assistant, a board certified patient advocate, and a Columbia University trained writer. His priority is helping people (usually chronic, rare or disabled patients and their allies) refine their writing and storytelling practice, and magnify their voice in healthcare. Jim is a teacher, an advisor, a public speaker, and a copy editor - all skills he practices regularly. He is married, lives in The Bronx, New York, and has more cats than he knows what to do with.

Montana is an educator, learner, and patient advocate. Her background is in higher education and is rooted in empowering others to be seen and heard. As a student coach, she strives to help her clients find and embrace the best versions of themselves so they can live every day more authentically and happily. She is especially passionate about advocateing for college students who experience hardships.   

Montana's life changed dramatically during final exams in her freshman year of college. After three misdiagnoses, she was diagnosed with a rare eye disease followed by another autoimmune condition several years later. While navigating the healthcare system as a young adult impacted by rare, Montana signed up for One Rare Experience and then One Rare Adventure. Having had great experiences in both programs, she joined the One Rare board to help others like herself who are impacted by a rare disease. When she’s not working or volunteering, Montana enjoys spending time with her family and her cat Panda, being outside, practicing yoga, going for hikes, meditating, reading, and working to better herself. 

Levi, a 29-year old from South Central, PA. Impacted by Idiopathic Intracranial Hypertension, Behcet’s Disease, and Parkinson’s, has undergone 10 major brain surgeries since their initial diagnosis in 2016. As a former Firefighter/EMT, Levi gained invaluable firsthand knowledge of the healthcare system. This clinical and practical knowledge was instrumental to diagnosing her own conditions when doctors fell short, and also professionally assisting patients with the arduous task of navigating the healthcare system in the present day. Being legally blind herself, Levi is very passionate about accessibility and inclusion for young adults who are often treated as an afterthought by society. As a Board Member for One Rare, she strives to ensure that all young adults have access to the most beautiful things life has to offer; fun, friendship, and the spirit of adventure. In her free time, she enjoys both casual and competitive eSports, and collecting Pokémon cards. 

James is a young but eager voice in the rare disease community. He is a Patient advocate and a full time high-school student. His focus is in patient rights (especially in marginalized communities) and making sure all voices are heard. James is an aspiring engineer and social activist.

He loves spending days walking through his home city of Boston and spends most of his time in his garden with his very energetic dog Stella.