Where
RARE
ILLNESS
MEETS RARE
SUPPORT
The patients who turn to us find not just a trusted source of information and resources but a passionate advocate.
As an advocate, we walk with them on every step of their health journey, provide easily accessible, honest education at diagnosis, and connect thousands in a community with peers who can relate, support, and share.
We work to identify candidates for clinical trial opportunities through a hybrid approach.
We strive to create dynamic patient communities you can’t find anywhere else.
that give patients a powerful voice and foster meaningful conversations to help create a better future for patients and those who care for them.
50+ ENGAGED
RARE COMMUNITIES
Every day, we connect with over 50 communities, delivering meaningful, relevant content. Our content is as unique and rare as the conditions it addresses, and it includes authoritative perspectives from real patients, carefully sourced and cited resource pages, and articles written by veteran journalists and PhDs.
Our disease-specific websites help create communities that have become indispensable to many of the rare diseases we cover, filling the information gaps that exist online.
These connections have allowed us to gain deep insights into the rare patient journey, and that knowledge provides a multitude of opportunities across profile development and clinical trial recruitment.
COMMUNITY MODERATORS
Our communities are built from the stories and connections of those living with rare diseases. From the writers to the forum moderators, the unique patient perspective is always front and center. Below are just a few of the moderators that lend their expertise to our communities.
ALLY MACGREGOR
ALYSSA SILVA
AMANDA SIFFORD
ALS News Today
ASHLEY GREGORY
Lambert-Eaton News
BAILEY ANNE VINCENT
CHARLENE MARSHALL
Pulmonary Fibrosis News
CHRISTIE PATIENT
CHRISTINA CORDARO
COLLEEN STEELE
DAGMAR MUNN
DANI LIPTAK
DEANN RUNGE
ED TOBIAS
JENNY LIVINGSTON
JODI ENDERS
JOHN CONNOR
KATIE GRIFFITH
LEAH LEILANI
MARY BETH SKYLIS
MICHAEL QUADRI
MICHELLE GONZABA
PRICE WOOLDRIDGE
Lambert-Eaton News
TITO OYE
ALLY MACGREGOR
AMANDA SIFFORD
ALS News Today
BAILEY ANNE VINCENT
CHRISTINA CORDARO
DAGMAR MUNN
DEANN RUNGE
JENNY LIVINGSTON
JOHN CONNOR
LEAH LEILANI
MICHAEL QUADRI
PRICE WOOLDRIDGE
Lambert-Eaton News
TITO OYE
ALYSSA SILVA
ASHLEY GREGORY
Lambert-Eaton News
CHRISTIE PATIENT
COLLEEN STEELE
DANI LIPTAK
ED TOBIAS
JODI ENDERS
KATIE GRIFFITH
MARY BETH SKYLIS
MICHELLE GONZABA
CHARLENE
ALLY MACGREGOR
Parkinson’s News Today
Ally Macgregor lives and works in Toronto, Ontario, Canada. She loves being physically active, traveling, cooking, baking, reading, and spending time with friends and family. A lifelong learner, she is currently working on her MBA through the University of Fredericton’s Sandermoen School of Business.
ALYSSA SILVA
SMA News Today
Diagnosed at 5 months of age, Alyssa has set out to raise awareness about life with spinal muscular atrophy (SMA) type 1 through writing. By getting personal and being open about her trials and triumphs, she wants the world to know that SMA can put up a good fight, but we can always fight back exceedingly harder. Aside from writing, Alyssa is the community director for an adaptive fashion brand and has founded her own nonprofit called Working On Walking. In her free time, she enjoys discovering new coffee shops within a 50-mile radius of her hometown in Rhode Island.
AMANDA SIFFORD
ALS News Today
Amanda Sifford is a school psychologist living in Florida. Her family has a history of amyotrophic lateral sclerosis (ALS) spanning multiple generations. Her family has participated in several research studies and has found that they have a mutated gene that is believed to be the cause of ALS. Amanda also has the mutated gene and has been volunteering for ALS research for about 10 years. She brings her experiences to the ALS News Today Forums, connecting with patients and caregivers around the globe.
ASHLEY GREGORY
Lambert-Eaton News
Ashley began working as an operating room nurse in Norfolk, Virginia, in 2014. In September 2016, she was diagnosed with Lambert-Eaton myasthenic syndrome after waiting six months for a diagnosis. Since then, she has been diagnosed with several other autoimmune diseases. In her spare time, she enjoys hiking with her Australian shepherds, reading historical fiction and thrillers, craft beer, attending concerts, gardening, refinishing antique furniture, and hosting game nights.
BAILEY ANNE VINCENT
Cystic Fibrosis News Today
Bailey is a deaf 34-year-old with atypical cystic fibrosis. She has been a journalist, columnist, and novelist for almost two decades, but is also an altruist, feminist, and narcissist who likes to ask for “fatty sushi” that’s not on the menu (it’s cream cheese, egg and avocado, respectively). She is artistic director of the body-positive dance company Company 360 in Virginia, as well as a professional dancer, choreographer, and homeschooling mother of two girls. As a formally misdiagnosed mutant, she hopes to raise awareness of atypical CFTR disease and help anyone who isn’t genetically in the black or white feel less alone. For more on her activism or art, please see catchingbreaths.org.
Charlene Marshall
Pulmonary Fibrosis News
Charlene is a fiercely independent 30-something-year-old who can’t sit still. She loves coffee, wine tasting, playing with her dog, and spending time on the beach with her family. She’s a lover of all things travel and never passes up an opportunity for a dip in the ocean! A proud Canadian, Charlene was diagnosed with idiopathic pulmonary fibrosis (IPF) in 2016 after 13 months of investigation into sudden shortness of breath, a chronic cough, and unusual fatigue. IPF has forced her to slow down, but she’s slowly learning the value of quality versus quantity in everything she does.
CHRISTIE PATIENT
Pulmonary Fibrosis News
Christie Patient is a lifelong explorer of the Wild West. She now resides in the Hawaiian Islands with her husband, Jonny, and their two four-legged friends. Christie is a full-time freelancer, nature lover, and business owner. She took a break from work in 2019 to care for her mother, Holly, before and after her double-lung transplant. Christie’s column documents the experience of her mother’s idiopathic pulmonary fibrosis (IPF) progression, monthslong hospitalization at UC San Francisco, and life-saving transplant. She hopes that her family’s transplant story can provide a unique perspective for other IPF patients and family members.
CHRISTINA CORDARO
Friedreich’s Ataxia News
Christina is a strong advocate for the Friedreich’s ataxia (FA) community. She lives in Philadelphia, Pennsylvania, where she works full time in the hotel industry. A former FA Ambassador for the Friedreich’s Ataxia Research Alliance (FARA), she is now a co-moderator for the Friedreich’s Ataxia News Forums. She enjoys partaking in local and national events to raise funds for research and has participated in three clinical trials and two clinical studies. In her free time, she goes to live concerts, football games (go Bills!), and tries new restaurants and bars. Christina is proud to say that she lives a full and happy life despite living with a disability!
COLLEEN STEELE
PH News
Colleen Steele is a forum moderator and columnist for Pulmonary Hypertension News. She was born and raised in New Jersey and received a Bachelor of Arts in English from Immaculata University in 1994. Colleen lives in Washington state with her husband and two sons. Her oldest child was diagnosed with idiopathic pulmonary arterial hypertension when he was 8. At 14, he received a heart and double-lung transplant. As a forum moderator she shares her experience advocating for her son and makes a great effort to help educate, inspire and support other patients and caregivers living with PH.
DAGMAR MUNN
ALS News Today
When Dagmar was diagnosed with amyotrophic lateral sclerosis (ALS) at the age of 59 in 2010, she tapped into her nearly 30 years of professional experience. She not only follows her own wellness and fitness advice but also inspires and teaches others to do the same. Dagmar is a patient columnist for ALS News Today, writing “Living Well with ALS.” In addition, she is one of the moderators for the ALS News Today Forum and writes a personal blog called “ALS and Wellness.” She lives in Arizona, enjoying finding humor in life’s situations, and spends her free time pursuing creative projects in fiber arts.
DANI LIPTAK
Muscular Dystrophy News Today
Danielle Liptak lines in Wilmington, North Carolina. She has a form of muscular dystrophy (MD) called facioscapulohumeral (FSHD). Dani is a forum moderator for Muscular Dystrophy News Today. She welcomes new members, asks and answers questions, and tries to strengthen the MD community by connecting patients and caregivers with one another and the latest news about muscular dystrophy.
DEANN RUNGE
SMA News Today
DeAnn’s role at BioNews is multifaceted. Not only does she moderate the forums on SMA News Today, but she also records content for flash briefings and creates vlogs that focus on living life with spinal muscular atrophy (SMA). DeAnn strives to show others that they can live a fulfilled life regardless of challenges. Despite her physical strength being limited, she takes pride in being extremely strong-willed.
ED TOBIAS
Multiple Sclerosis News Today
Diagnosed with multiple sclerosis (MS) at age 32 in 1980, Ed has written the “MS Wire” column for Multiple Sclerosis News Today since August 2016. He presents timely information on MS, blended with personal experiences. Before retiring from full-time work in 2012, Tobias spent more than four decades in broadcast and on-line newsrooms as a manager, reporter, and radio news anchor. He’s won several national broadcast awards. As an MS patient communicator, Ed consults with healthcare and social media companies. He’s the author of “We’re Not Drunk, We Have MS: A tool kit for people living with multiple sclerosis.” Ed and his wife split time between the Washington, D.C. suburbs and Florida’s Gulf Coast.
JENNY LIVINGSTON
Cystic Fibrosis News Today
Jenny is passionate about raising funds and awareness for cystic fibrosis, and she helped form the foundational Patient and Family Advisory Board at her CF center. She was chosen as a recipient of the Vertex All in For CF Scholarship twice as she pursued a degree in psychology, which she earned in 2019. Jenny lives in central Utah and writes about motherhood and living with cystic fibrosis.
JODI ENDERS
Myasthenia Gravis News
Jodi Enders is the forum moderator for Myasthenia Gravis News. Jodi resides in Florida, where she loves to fossil hunt and paddle with manatees in the springs. Jodi hopes that her anthropological specialties in cultural sensitivity, providing resources to marginalized individuals, and engaging digital communities will enhance the perspectives and struggles of those living with myasthenia gravis (MG). Jodi aims to use lived experiences with MG as examples to help spread compassion and mindfulness globally.
JOHN CONNOR
Multiple Sclerosis News Today
In the 1980s, John created the first regular column about the burgeoning London stand-up scene. In 1990, he wrote a book about its effect on the Edinburgh Festival: “Comics: A Decade of Comedy at the Assembly Rooms.” That year, he also devised and ran a live topical stand-up team show at The London Comedy Store, The Edge. (It was destroyed in 2020!) In 2009, John was diagnosed with relapsing-remitting multiple sclerosis, which cut short his main job as a TV casting director for “Black Books,” “My Family,” et al. Now, John writes “Fall Down Get Up Again,” an irreverent journey with multiple sclerosis, and also serves as MS News Today Forums co-moderator.
KATIE GRIFFITH
Friedreich’s Ataxia News
Katie, who lives in Alabama, is a wife and mother of three. Life changed suddenly in 2018 when her oldest son, Noah, was diagnosed with Friedreich’s ataxia just months after she and her husband adopted their youngest child from foster care. Previously a nurse, Katie now spends her days meeting the needs of her children and advocating for their well-being. Some of her favorite things are the enneagram, deal finding, and long baths at the end of tough days. Katie’s goal is to offer glimpses of hope in the midst of daily life as a caregiver.
LEAH LEILANI
Muscular Dystrophy News Today
Leah Leilani is a Southern California-based patient writer for Muscular Dystrophy News Today. She has been an active member of the muscular dystrophy community since her regional ambassadorship beginning at the age of 10 after her diagnosis of a rare neuromuscular disease called mitochondrial myopathy. Leah aims to advocate for her disability and promote an understanding of her condition by evoking a positive outlook upon the obstacles she faces. Leah’s work with Muscular Dystrophy News Today doesn’t just stop at her column as she also doubles as a co-moderator on the forums. Away from her jobs, Leah is known amongst her family and friends for her artistic creativity and out-going personality
MARY BETH SKYLIS
Parkinson’s News Today
Mary Beth is a freelance writer specializing in personal narratives. Her work focuses on the outdoors and the transformative powers of nature. When her dad was diagnosed with Parkinson’s in 2013, her search to understand the disease materialized through language. She now writes to help others understand the disease and how to be a compassionate caregiver.
MICHAEL QUADRI
Sickle Cell Disease News
Michael Quadri lives in the U.K., where he works as an IT professional. Having a sister with sickle cell, he brings his experiences as a caregiver and family member to the forums community. He enjoys spending time with friends and family, sports, and traveling.
MICHELLE GONZABA
Myasthenia Gravis News
After struggling to identify the cause of her muscle weakness for almost a year, Michelle was diagnosed with myasthenia gravis (MG) in 2011. Through her column and forum moderation for Myasthenia Gravis News, she hopes to help those with MG know they aren’t alone in their struggles and triumphs. Michelle lives in Texas and enjoys movies, TV, and awards season.
PRICE WOOLDRIDGE
Lambert-Eaton News
A native Texan, Price was born in the capitol city of Austin in 1949. Price served four years in the U.S. Air Force during the Vietnam War. After completing his service, he returned to college and graduated from the University of Texas at Austin in 1975. The next 30-plus years were spent in broadcasting, primarily in television production, with a couple of early years doing on-the-air work in radio. Price produced and directed one Emmy-winning documentary, received three Emmy nominations for his work, and one Emmy win as a production manager. He retired from broadcasting in 2009 and returned to his home state of Texas to be near family.
TITO OYE
Sickle Cell Disease News
Tito is a 23-year-old London-based tenancy manager and lover of life. For as long as she can remember, she’s had a passion for helping others. She writes to help others realize that sickle cell doesn’t need to define their entire identity.
PARTNERS
LEADERSHIP
There is no greater example of our commitment to serving rare disease patient communities than the talented, diverse group of professionals who comprise our team. Nowhere else can you find such a group of industry visionaries, award-winning journalists, proven researchers, and inspired patients. By combining all their unique skill sets and experience, they are able to create the content and environment that make our communities special.
Here are just a few featured profiles from among our growing team of talented professionals:
KELLIE BENN
VP of Content
STEPHEN BENZ
SVP Client Operations
CHRIS COMISH
Founder/CEO
MARCELLA DEBIDDA
President BioNews Clinical
BRAD DELL
Director of Community Content
TY DUNKELBERGER
VP of Business Intelligence
BRITTANY FOSTER
HR Manager
SHANA GRAY
Copy Chief
MELISSA MANGAR
VP Media Operations
MICHAEL MORALE
PCE – Director of Accessibility and Accommodations
JENN POWELL
Director – PCE – Advocacy and Outreach
ISAURA SANTOS
Director of Social Media
DAN SCHWARTZ
EVP Business Development
KEVIN SCHAEFER
Associate Director of Community Content
PATRICIA SILVA
Director of Science Content
KELLIE BENN
Editor in Chief
STEPHEN BENZ
SVP Client Services
CHRIS COMISH
Founder/CEO
MARCELLA DEBIDDA
President BioNews Clinical
TY DUNKELBERGER
GM BioNews Insights
MELISSA MANGAR
VP Media Operations
JENN POWELL
Director Community Engagement
DAN SCHWARTZ
EVP Business Development
KEVIN SCHAEFER
Director Forums
BRAD DELL
Director Columns
BRITTANY FOSTER
Human Resources Coordinator
MICHAEL MORALE
Sr. Director Multi-channel Content
ISAURA SANTOS
Director of Multimedia Services
PATRICIA SILVA
Senior Managing News Editor
KELLIE BENN
VP of Content
Kellie started out as a copy editor with BioNews in February 2018 and now serves as VP of content of the organization. She had previously worked for a variety of newspapers as a copy editor, working her way up to deputy night editor at a regional newspaper in Virginia. She is an Army veteran and served for eight years as a Russian linguist. After leaving the service, she went on to graduate from Trinity University in San Antonio, Texas, with a bachelor’s degree in communication and Russian. Her interest in and experience with the Russian language led her to a Fulbright fellowship in 2012, awarding her the opportunity to spend an academic year in Oryol, Russia, teaching English to university students. A lifelong equestrian, she can usually be found at the barn hanging out with her horse, Penny, in her spare time.
STEPHEN BENZ
SVP Client Services
Stephen is the BioNews SVP of client services. Stephen has been in the healthcare arena for 20-plus years and led multiple teams along his healthcare journey. Stephen most recently comes to BioNews from Experian Health where he specialized in client services with extensive understanding of hospital and physician workflows and software solutions optimizations. Stephen specialized in building strong executive relationships at both hospital and physician levels to ensure client success. He is a native Pensacola resident where he enjoys surfing, golfing, and boating.
CHRIS COMISH
Founder/CEO
Chris developed the BioNews concept as a way to leverage digital news content as a means of reaching and connecting with rare disease populations who had little to no access to fresh, accurate, and authoritative information about their disease online. His vision has fueled the growth and maturation of patient/caregiver ecosystems that are enriching rare disease communities online while also providing a platform for offering valuable services for helping biotech, health, and life sciences companies fulfill their marketing and promotional objectives. Chris works in every facet of the BioNews work process, from serving as a direct contact with all clients to helping shape the editorial focus of each site in the publisher role.
MARCELLA DEBIDDA
President BioNews Clinical
Marcella is the president of BioNews Clinical where she is involved in every facet of the work process that connects patients in our rare disease communities with ongoing clinical trials. As a creative builder and change agent, her mission is to promote a human-centered healthcare system built on empathy and radical collaboration: where patients are integral contributors to the collective efforts aimed at advancing the understanding and cure of rare and chronic diseases. Over the past 12 years, across multiple organizations, including Harvard Clinical Research Institute, Science 37, and monARC Bionetworks, she led a multitude of patient-centric projects spanning from patient-powered trial design, patient recruitment and engagement for traditional and virtual/remote clinical trials, patient community development, growth, and engagement through co-creation with peers. She serves as an adviser to pharmaceutical companies, nonprofit organizations, healthcare innovation accelerators and startups for topics related to effective patient engagement in clinical trials and co-creation with patients.
BRAD DELL
Director of Community Content
Brad Dell has cystic fibrosis and a double-lung transplant. Technically deaf, he hears with the help of cochlear implants. Before BioNews, he worked as a copy editor and journalist for several culture and lifestyle magazines in Hawaii. He was also the executive editor for Honolulu’s Abstract Magazine. He serves as the BioNews director of community content, boosting patients’ and caregivers’ voices to cultivate change in the chronic conditions community. To do so, he recruits, trains, edits, and supports dozens of columnists.
TY DUNKELBERGER
VP of Business Intelligence
Ty began his career with BioNews in August 2019 as a consultant and now serves as the vice president of business intelligence — the research division of BioNews. He worked previously as a Marine Corps public affairs officer. Following his 12-year career in the Marine Corps, Ty worked for Allergan in pharmaceutical sales, helping doctors understand the value of new treatments for their patients. After three years at Allergan, he began a role at Cisco Systems selling data center systems to the Air Force. Ty then found an opportunity to work with Chris at BioNews. He began by piloting the concept of generating patient-reported outcomes and now works with a highly skilled team of researchers to better understand and help improve the quality of life for the many patient communities BioNews serves. You can find Ty, in his free time, enjoying the beach with friends and family, playing tennis, biking, running, working out in the gym, or on a boat fishing. He lives with his wife of 10 years and two daughters on Pensacola Beach. He also has two sons from a previous marriage, one in college and one who is a high school junior in Virginia.
BRITTANY FOSTER
HR Manager
Brittany Foster is the HR manager at BioNews and a columnist for Pulmonary Hypertension News. She has a bachelor’s degree from Providence College in special education, elementary, and middle school education. Prior to BioNews, she worked as an eighth-grade special educator. She took her passion for advocating for students in a classroom and now advocates for those with rare diseases. It is her mission as HR manager to ensure all hires have this same passion and desire to achieve a better quality of life for our patient communities. Brittany lives in Cranston, Rhode Island, where she loves to explore hiking trails with her Cavalier King Charles spaniel, Bernie.
SHANA GRAY
Copy Chief
Shana Gray has served as copy chief with BioNews since March 2022. She previously worked for a number of newspapers in the Southeast, serving most recently as editor of six local news publications in Virginia. Shana started working at newspapers in high school and worked her way through college while serving at The Fayetteville (N.C.) Observer, in her hometown. She now resides in Hampton Roads, Virginia, where she enjoys reading in sight of the Chesapeake Bay and playing with her two pups, Roxie and Gus.
MELISSA MANGAR
VP Media Operations
Melissa joined BioNews as vice president of media operations. She has been dedicated to the pharmaceutical advertising industry for eight years but has been involved in the medical administration field for 12-plus years. Her most recent accomplishments stem from her previous positions in project management and operations, innovating the daily processes internally while helping to deliver exceptional educational tools to physicians and patients. Melissa currently resides in New York, enjoys spending time with her family, and loves music.
MICHAEL MORALE
PCE - Director of Accessibility and Accommodations
Michael received his bachelor of science in business administration, with a major in management information systems in 1990, from the University of Texas at Dallas. In 2000, he received his MBA, with a major in management, from Amber University. In his working career, Michael worked for various companies, including ExxonMobil Corporation, where he was responsible for safety and ergonomics for the Dallas region. Along with working for ExxonMobil, Michael was an adjunct faculty member and college instructor for the Dallas County Community College District for 18 years. Due to his spinal muscular atrophy, he was forced to go on permanent disability in 2010. Michael began working for BioNews Services as a YouTube developer and podcast specialist in June 2018. After being promoted to director of forums and multimedia, BioNews combined its multimedia and social media divisions, and Michael was promoted to senior director of multi-channel content. In this role, Michael oversees all multimedia platforms, including podcasts, audio news, and YouTube videos. Michael also oversees all social media platforms, including SoundCloud, Spotify, iTunes, Facebook, Twitter, Pinterest, and Instagram.
JENN POWELL
Director - PCE - Advocacy and Outreach
Jenn Powell is the BioNews director of patient and community engagement. She lives in Southern California where she enjoys volunteering for animal rescue and spending time with her husband and golden retrievers. In her four years with BioNews, Jenn has created content for and collaborated with multiple divisions of BioNews, including BioNews Insights and BioNews Clinical. Jenn is driven to elevate the needs of those in the rare disease communities. She has done so through her column, reading of news briefings, and hosting the recently launched MS News Podcast. Her patient perspective complements her passion and industry acumen for cultivating and engaging communities both within and outside of BioNews.
ISAURA SANTOS
Director of Social Media
Isaura Santos is the director of social media at BioNews. She has a bachelor’s degree in cellular and molecular biology, and a master’s in communication, culture and information technologies. She is also a recording artist in Portugal. She loves to sing, compose, and produce music. She has a love for backpacks and is a technology and gadgets “nerd.” Isaura loves photography and shoots film photography. In her free time, she watches the entire series of “How I Met Your Mother” and has watched the series more than 10 times.
DAN SCHWARTZ
EVP Business Development
Dan is the BioNews EVP of business development. For over 20 years, he’s led teams in similar roles, most recently with CheckedUp where he was responsible for launching a new telemedicine platform designed for physicians and patients in specialty care. Dan specializes in working with pharma marketers to enable them to better and more effectively communicate with doctors, patients, and caregivers. He currently lives in the greater NYC metro area where he enjoys hiking, golfing, and a variety of outdoor activities.
KEVIN SCHAEFER
Associate Director of Community Content
Kevin graduated from North Carolina State University with a bachelor’s degree in English in 2016, and he is passionate about different forms of storytelling. He started at BioNews in 2017 as a columnist for SMA News Today, sharing his experiences as an adult with spinal muscular atrophy type 2. He eventually transitioned to a full-time role, helping build the company’s multimedia and forums divisions. As associate director of community content, he is responsible for supporting the director of community content in bridging the gap between our patient populations and our websites. He does this through building and maintaining patient and caregiver forums across BioNews’ disease sites. He oversees every step of the process, from hiring, training, and guiding forum moderators. His goal is to create engaging and supportive online communities for patients and caregivers to connect.
PATRICIA SILVA
Director of Science Content
Patricia holds a PhD in medical microbiology and infectious diseases from the Leiden University Medical Center in Leiden, Netherlands. She has studied applied biology at Universidade do Minho and was a postdoctoral research fellow at institute de Medical Moleculer in Lisbon, Portugal. Her role at BioNews has led her to build a team of PhD researchers who serve as science writers and editors, whose role is to ensure that the science and research that BioNews reports on daily is 100% accurate, while also written in a way that allows patients and caregivers to easily grasp the important details.