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.
As a young adult living with DMD, Austin is an active member of the rare disease community. He is currently a student at Bunker Hill Community College with a goal of a Mechanical Engineering Degree. Austin is also an intern for the second year at Solid Biosciences where he supports the team in their advocacy and gene therapy program. His accomplishments include an instrument of change award from the UCLA Center for Duchenne Muscular Dystrophy, a seat on the Parent Project Muscular Dystrophy (PPMD) Adult Advisory Committee, and multiple speaking engagements at rare disease events and congressional and regulatory briefings. Austin brings the team expertise in living with rare disease and mobility issues, participating in clinical trials and excelling in adaptive sports. In his free time he is a soccer player on local power soccer team and really enjoys adaptive skiing.
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.
Paul is a Boston-based, independent public relations/patient advocacy consultant providing media relations and patient engagement support for biopharmaceutical companies. Paul has more than 20 years of corporate and agency communications experience within the life science sector. During this time Paul has provided integrated public relations support for product launches, FDA approvals, national and international media campaigns, patient advocacy programs, supported major industry conferences, medical meetings and trade shows, and developed media strategies for the placement of stories in global top tier business and trade media. Paul has been involved in strategic programs with a focus on media and analyst outreach, event support, internal communications and collateral development for clients in many key therapeutic areas, including autoimmune disease and many rare disease categories.
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.
Tucker grew up in Raleigh, North Carolina. He led the life of a typical teenager; playing sports, learning to cook at his first job, learning to drive and playing the piano. On October 18th, 2006 Tucker's life would be changed forever. Tucker was able to represent Team USA at three Paralympic games, winning three medals in 2012 (Silver in the 100-meter Backstroke, Bronze in the 100-meter Freestyle and Bronze in the 50-meter Freestyle.) and one medal in the 2016 Rio Games. (Bronze in the 100-meter Backstroke.) He holds one World Record, five American records, and 5 Pan-American records that still stand today. Tucker is based out of Chicago and currently works at BP, as the Workplace Colleague Experience Lead for the Americas. Tucker has retired from the sport of swimming and is impacting the world of BP with an enthusiastic passion for a ‘Limitless Vision’ mindset to further the accessibility movement.
Kevin is currently Chief Commercial Officer at EVERSANA Life Sciences. He brings extensive experience in working with insurance companies, policy makers and government programs to support access to therapies for individuals with rare conditions. He has led access efforts for products treating rare infections, cystic fibrosis, seizures and immune system disorders. He has witnessed the challenges of transitioning to independence that young adults with these conditions encounter. He believes One Rare can be the catalyst for healthcare organizations to devote more effort and thoughtful support during this pivotal period.
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.