Anthony D.
Vice Board Chair

Anthony is a motivated communication professional with a focus in the rare disease space. He lives with Duchenne Muscular Dystrophy, a disease that weakens his muscles over time, but he never lets it stop him from advocating for every person with a rare disease to be fully included in society.

Anthony is currently concentrating his energy on the social barriers that the pandemic has brought into the public view, such as the need for a virtual option for every in-person event and increased video game accessibility. That is why the Our Odyssey mission hits so close to home for Anthony - he has been striving for years to find a community that goes beyond just health and disease.

After graduating from Rutgers University, Anthony struggled to find a career due to the discrimination behind closed doors that companies utilize against people with disabilities and people in wheelchairs. Amicus Therapeutics was the first to provide him an opportunity to use his abilities as the Internal Digital Communications Associate partnering with employees to unify brand, people, and message.

Lori M.
Board Member

Lori is a dedicated biotechnology professional with more than two decades of communications and patient advocacy experience focused on rare disease communities. She began her career at the global public relations agency Brodeur Worldwide and eventually moved to an in-house role at Thermo Fisher Scientific, where she oversaw communications activities for 12 divisions worldwide, financial media relations, and executive communications. 

Lori also spent eight years at Sanofi Genzyme where she led global communications for Rare Diseases and was the main corporate spokesperson for issues related to clinical development programs, product supply issues and disease awareness initiatives. She later joined their Global Patient Advocacy team where she initiated programs to support disease awareness, provide caregiver support and communicate clinical program updates. 

In 2017, Lori began her own consultancy business and now advises biotechnology companies in the U.S. and Europe on patient advocacy and communications strategies.  A graduate of Boston College, Lori is an active member of her community north of Boston, and is the mom of two boys.

Sika D.
Board Member

Sika is Director of Patient Advocacy at Travere Therapeutics. In her role, she is responsible for developing and managing relationships with the patient communities that Travere serves. Additionally, Sika is leading the development of initiatives to address health disparity in the rare disease space.

Before joining Travere, Sika was the Director of Education Programs at the National Organization for Rare Disorders, where she developed and oversaw programs designed to educate patients and caregivers, healthcare professionals and students. 

In 2015, Sika founded Shine Light on Rare Diseases, an awareness initiative she established in memory of her sister, Carolyn, who passed away from complications of relapsing polychondritis, a rare autoimmune disease. The goal of Shine Light on Rare Diseases was to highlight the prevalence of rare diseases and to help people with rare diseases receive faster diagnoses to save and improve the quality of their lives.

Alan G.
Board Member

Alan has spent his career in the pharmaceutical industry holding positions in Sales, Sales Training, Marketing, and Sales Management but it was a personal experience 23 years ago that led Alan to his Advocacy role.  Alan's wife, Emilie, was diagnosed and treated for thyroid cancer and it was through this experience that Alan learned first hand what it meant  to be a caregiver and an advocate. Serving the last 23 years in an Advocacy role in both large and small start-up organizations has been the highlight of Alan's career and has given him a unique perspective on the value of community. 

Because of his vision and work to provide previously unrecognized groups of individuals living with rare diseases a  voice, Alan has been called the "Architect" of the FH and FCS patient communities both here in the US and ex-US. Today, Alan works to build  a stronger deaf and hard of hearing (DHH) community among individuals and families impacted by genetic and nongenetic forms of hearing loss.

John M.
Board Member

John is currently the owner of Manison Farms (Grape and Tree Farms), Triple J’s Consulting (business consultancy on strategy and growth) and is an Operating Board Member of Little Johns Co (nationwide swim school and tutoring companies) focused on new business development and operations and a Board Director and Secretary of STRIDE Aquatics, Inc. a USA Swimming Swim School in Raleigh, NC.

From 2019-2022 John served as a Board Director at Welch’s Foods and was a member of the Audit and Compensation Committees. John also served as a Board Director of National Grape Cooperative and was a member of the Governance Committee.

John retired in 2017 from General Electric after working in several different business units. During his 33-year career John held positions as CEO, GM and Vice President of GE International. Highlights in his career included launching three new Business Units, serving as CEO of GE Mining, and leading GE Transportation into the Industrial Digitization market space. The majority of his career John worked in global markets including residing in Japan & Brazil.

Prior to GE, John spent four years in the United States Air Force. John has a BS in Professional Aeronautics from Embry-Riddle Aeronautical University and an MBA from Gannon University.