Our 2021 One Rare Virtual Experience Speakers/Presenters

  Anna Laurent is a Head Start Social Worker at Paducah Public Schools. Born and raised on a family farm in Kentucky, she was diagnosed with Alagille Syndrome as an infant and began advocating for those impacted by rare diseases and disabilities at a young age. After becoming involved in numerous patient advocacy organizations, she found a lack of resources supporting young adults and this ignited her passion for amplifying the needs and voices of young adults. The culmination of this work led to Anna becoming the Head of Programs and Initiatives at Our Odyssey, an organization connecting young adults impacted by rare or chronic conditions with social and emotional support in the hope of improving their quality of life.

 Dakota received her B.A. in biology from Bryn Mawr College in May 2011 and a Familial Adenomatous Polyposis (F.A.P.) diagnosis two months later. Between FAP & desmoid tumor diagnoses, statistically speaking, she's four in a million. Patient advocacy fills the void left by her cancerous colon. As Senior Patient Advocacy Manager at BioCryst Pharmaceuticals, she ensures that the voices of rare patients and the non-profits that serve them are heard and supported. She's the co-founder of Young Adult Cancer Connection which hosts Cancervention, Philadelphia's first young adult cancer conference, and the creator of FAPulousTV, the first YouTube Channel dedicated to bringing awareness to FAP.

Trey hit the gene pool lottery so to speak and was diagnosed with an abnormally severe and extremely progressive disease called Charcot-Marie-Tooth, Hypermobile EDS, along with an extensive list of comorbidities.  While his main background is in Mechanical Engineering, Computer Programming, and Mathematics, he just finds joy in learning about so many things. Trey is the true equivalent of a nerd, and loves to play D&D on the weekend with friends, and any down time he has will be spent watching documentaries and just learning about space and anything more he finds of interest that he can keep cramming into his head. He also loves to watch your typical sci-fi television shows such as "Doctor Who" and "The Expanse."

Marcelle Longlade is an entrepreneur, teaching meditation and yoga as she blends  other eastern modalities of wellness into her classes and offerings. She’s also a biomedical engineer and worked in medical data management for 3 years, after which she transitioned, devoting herself to her personal brands, Chronically Surviving and Asintmah Healing. She has been battling with multiple rare chronic conditions from a young age, the main diagnoses being Familial Mediterranean Fever, Narcolepsy with Cataplexy, and connective tissue disorder of hEDS. Marcelle has come to realize there is a lack of availability and accessibility for the vulnerable like her and others in the young adults living with chronic and rare conditions in the meditation and yoga community. She has set her mind to change that reality, and has had the privilege to meet and lead many zebras alike since she completed her yoga and meditation teacher training 3 years ago. Mindfulness has had a profound impact on Marcelle’s life.

Michelle is a Latina blogger and storyteller, adjunct professor at  DePaul University’s College of Communication in Chicago, and a health communications professional in biopharma. As Senior Manager of Product Communications at Horizon Therapeutics, Michelle manages their rare disease communications program, #RAREis™, a program about raising awareness through storytelling. She recently launched a new website highlighting the unique and personal stories of those living with rare diseases through video and blog posts, empowering them to share their  voice. She frequently partners with advocacy organizations and  people living with rare diseases to build resources and share their stories via social media and digital platforms. Her education includes a MA from DePaul University in health communication from the College of  Communication and a BA in journalism and mass communication from the Walter Cronkite School of Journalism at Arizona State.   

Paul is Director of Student Leadership and Engagement at Bunker Hill Community College (BHCC), the largest and most diverse community college in Massachusetts - with over 10,000 students from 100 countries and 75 languages are spoken on campus on a daily basis. He is from Central NY, and graduated Phi Beta Kappa from Elmira College with a B.S. in Psychology and an emphasis in Management. In 2002, he graduated from Emerson College with a Masters in Theatre Education. His work focuses on utilizing the arts to explore individual & cultural identity and create experiences for students that celebrate diversity & community. He believes what we're told is ephemeral, but what we experience is visceral - our individual stories and lived experiences are the richest teachers. He teaches his students that through exploring our personal stories, & deconstructing our myths and legends, we can find our identity and our strength and use this as a catalyst for transformation. 

Dr. Lindsey Matt is a clinical psychologist at UCLA's Operation Mend, a program that provides comprehensive trauma-focused mental health treatment and surgical care to veterans with post-traumatic stress and other comorbid physical health conditions. She completed her MA and PhD at Kent State University and has previously worked in clinical practice and/or research at Rush University Medical Center, Cleveland Clinic, Yale, and Temple University. Shortly before a planned move from Cleveland to Chicago in order to complete her clinical training, and a year before her wedding, Dr. Matt was unexpectedly diagnosed with Stage III colon cancer. The rapid transition from provider to patient provided an invaluable opportunity to see which aspects of physical and mental health care worked best. Nearly four years post cancer treatment, Dr. Matt has remained passionate about advocating for the mental health of young adult cancer patients and for cancer survivors.

Jacob Thompson (TEN20) has gone from diagnosis to destiny. His childhood dream was to be a professional athlete. He would tell you that, sometimes, our dreams for our lives need to die before we can live the true dreams and purpose that we were created for. He wouldn't only say this; he lives it every day. In his late teens, Jacob started having trouble performing athletically at a high level. Throughout college and after graduation he had not been feeling right physically for a long time and finally decided to see a doctor. After a series of tests he was diagnosed with a rare, genetic condition known as Friedreich's Ataxia (FA). This diagnosis was an opportunity for Jacob to give up on his life and his faith. Instead, he chooses daily to make the most out of his situation. He uses his story and his art as a way to inspire others, helping them persevere through their challenges and find their purpose. He has spoken and shared his art, and is now working on writing his first book.

Ryan is a digital interactive artist, programmer, and video game designer currently focused on narrative VR, serious, and accessible games. The first decade of his career was spent as a UI/UX designer, programmer, and software architect for Davita Healthcare, a Fortune 500  dialysis provider. Ryan currently serves as a Creative Director and Head of Narrative for Numinous Games, a studio he co-founded in 2012. Numinous Games first title, That Dragon, Cancer, was created as a poetic memorial to Ryan and his wife Amy's third son Joel, and Joel's fight against terminal brain cancer. That Dragon, Cancer went on to receive broad critical praise, winning a BAFTA award in 2017 for innovation as well as a 2016 Peabody / Facebook Futures of Media award. Numinous Games has given Ryan the chance to share awareness of video game accessibility through The Playability Initiative and flex his artistic muscle by creating CG art with design tools like Blender and Photoshop. 

  Gabe Mollica is a writer and comedian from New York City. Before the quarantine he performed stand up comedy nightly in clubs and bars all over the county. He’s been featured on The Moth Radio Hour, the New York Video Game Awards, and The Edinburgh Fringe Festival. His podcast “35 minutes” features interviews with former classmates from high school, college, and the New York comedy scene. 

Mike is a software developer and producer with 20+ years combined experience in healthcare and video games. In addition to working at Numinous Games, he is an aspiring voice actor and content creator on Twitch. Mike has managed teams of 30 developers, QA analysts, and configuration managers, but his heart is in The Playability Initiative and creation of accessible video games through world building and design.

 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 focused on the need for a virtual option for in-person events & increased video game accessibility.

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.

Emily is a chronically ill young professional based out of DC working in behavioral health and patient advocacy. Having been diagnosed with short bowel syndrome in infancy and unable to absorb nutrition orally, she was dependent on Parenteral Nutrition until receiving an isolated small bowel transplant. Despite these challenges, Emily is a graduate of Boston University and currently works outside of DC as a Supervising Vocational Specialist. Combining her expertise in behavioral health with her lived experience of navigating multiple tertiary hospitals has led her down the path of studying the impact of medical trauma and medical PTSD on patients. In preparation for a PhD in medical trauma, Emily founded the organization POP! and hosts patient lead discussion groups on all things medical PTSD related in an effort to learn what providers need to know in regard to the mental health side of the overall patient experience.

Creativity has always been a family value for co-founders Jill Kerner Schon and daughter Jackie Schon who are both artists by trade — Jill digitally as a graphic designer and Jackie as a noted photographer and painter in the Boston area. Jackie graduated with a BFA from Washington University in St. Louis and exhibited artistic talent since she was a little girl. Jackie spent her childhood surrounded by crayons, markers, and strong female entrepreneurs. As for Jill, she had not picked up a paintbrush since the third grade. However, upon learning of the “Paint and Sip” concept, she was amazed at the beautiful paintings created with two hours of instruction in a social, fun atmosphere. While creativity was celebrated in both of their childhoods, neither Jill nor Jackie imagined that one day they’d be running a business centered around it. Today, both are heavily involved in The Paint Bar business.

Seth is a motivational speaker and rare disease advocate who is passionate about using his personal experience to support the health community. His passion is driven by his mother's 17-year battle with the rare, genetic disease known as Huntington's Disease (HD). At 20, Seth also tested positive for the disease & is a gene carrier. He's been involved in the HD community for a decade. He is a nonprofit leader with 10+ years of experience in patient advocacy within the rare disease space. He has a successful track-record of speaking and community engagement, including a talk at TEDxNatick. Seth shifted his focus to support young people because he knows the importance of helping others deal with the daily challenges.

Introducing teacher and singer songwriter, Mr. T (Allen Thurlow), from Gladstone, NJ! He’s a teacher, coach, dad, and children’s songwriter on a mission to change the world, inspire others, and make people feel happy with his music. Mr. T. began taking song requests from friends and students in March of 2020, posting them daily on Facebook and YouTube. In 2020 alone he wrote 65 songs, including Change the World, which won a “Video of the Year” award from Funky Kids Radio in Australia. He is currently working on a self-produced album with a local fellow musician, Jim Goodwin. You can keep up with Mr. T & Friends on social media here, as he sets out on his new quest to play a Zoom show in every single state in America!

Jonah is a game designer and developer with a focus on accessible design. Recently, he graduated from Wilfrid Laurier University with a BFAA in game design and development. Now, he spends his free time working on new accessibility software and games to raise awareness for accessible design. With the support of Anthony DeVergillo, he is working on a new virtual game controller OverJoyed! allowing users to play games using only their mouse. With a hopeful launch planned for this Fall, Jonah looks ahead to the future of OverJoyed! and how his knowledge of accessible game design can transfer to pedagogical design as he prepares for his Graduate Diploma in Secondary Teaching at Auckland University of Technology. 

Raid The Room is the only pop-up escape room experience in the Greater Boston Area. Prior to going virtual, they brought their experiences to general consumers at any of our 4 locations in Cambridge, Somerville, Boston, and Burlington and everything they do is family friendly! They also host corporate team building, fundraising, and educational special events for many companies. Are you ready to Raid The Room?

The Young Adult Representatives of Rare Disease Legislative Advocates (RDLA) are a highly motivated group of 16-30 year olds from the rare disease community. The main purpose of YARR is to instill confidence in the next generation of rare disease advocates. They want their peers to be supported and advocate to bring more affordable, safe and effective treatments to the overall rare disease community.

Next Step shatters limitations and elevates aspirations of young people with serious illness during their transition to adulthood. In their years of experience working with this amazing community, they have developed transformative programming based on a repeatable process of change. Executive Director Bill Kubicek founded Next Step in 2001 with the guidance from the late actor/philanthropist Paul Newman.

Medable is committed to building a diverse group of individuals from a wide variety of backgrounds and circumstances to bring real and actionable perspective to decentralized clinical research. The PAC works to impact clinical trials and direct-to-patient clinical research by offering insights, guidance, and feedback on Medable projects and trials that touch specific disease.

Global Genes’ story began with their loved ones. They are the friends and supporters of patients close to us who are affected by rare disease and understand the confusion, the overwhelming experience of the unknown and the feelings of isolation all too well. And we know we aren’t alone. That’s the reason Global Genes was born – to connect, empower and inspire the rare disease community.

Patients Rising Now is a national nonprofit organization dedicated to advocating for the rights of patients with chronic and life-threatening illnesses. They work at community, state and federal levels to activate diverse grassroots network of patients, families and allies in support of reforms and legislation aimed at advancing patient access to and the overall affordability of healthcare.