Morgan Manella was diagnosed with Crohn's Disease at the age of eleven. Although this debilitating illness has imposed many challenges on Morgan's daily life, Morgan decided that she would not allow her disease to get in the way of her happiness or success.
At a young age, Morgan realized that there are many children suffering to such an extent that they are unable to develop a similar outlook. When she was 15, Morgan
founded the first teen support group in South Florida for children and young adults with Crohn's and Colitis. She was also a Keynote Speaker at the 2008 Book of Hope Luncheon where she spoke about the challenges of living with Crohn's and the steps she has taken to overcome this illness.
Morgan's experience with Crohn's has fueled her professional interests. Morgan studied journalism at Emory University, and she previously worked at CNN covering health and wellness. She is now a Platform Editor for the Wall Street Journal.
Lexi Pappas is an advocate for and is also diagnosed with FSHD, a type of Muscular Dystrophy. Lexi was unofficially diagnosed with FSHD when she was about 12 years old. They knew she had developed it since it was genetic on her mothers side of the family. (Recently though, she was officially diagnosed by a doctor and plans to participate in upcoming clinical trials for FSHD). In the beginning, she would hide her disability as she was afraid of how people might perceive her.
She realized though that hiding this huge part of her life, was not going to help in the fight to find a cure, so at about 18 years old she began to advocate for FSHD. She has held multiple fundraisers, attended conferences, spoken at events, and met many others living with her disability along the way. Recently, Lexi has become more involved with advocating for all disabilities rather than just her own. In daily life, Lexi is a video editor and producer at Dell Technologies, and volunteers her time editing videos for non-profit organizations.
Rebecca is a communications and public affairs professional with a focus on healthcare and nonprofit media and advocacy. Her work is driven by a passion for writing, mission focused organizations and social justice issues.
With Our Odyssey, Rebecca has helped strategize to raise awareness for programming and develop communications for program participants.
Rebecca graduated from Suffolk University with a bachelor’s degree in government with a specialty in American politics and public relations. She is currently a Senior Account Executive at Solomon McCown & Cence, an award-winning strategic communications and public affairs agency, where she works on the healthcare, nonprofit and public affairs teams.
Samantha Stallings is a preschool teacher and a rare disease advocate in Kentucky. She has always been an advocate for health, specifically heart-defects, but started getting more involved in the rare disease space when she was diagnosed with Loeys-Dietz Syndrome and Homocytinuria at age 23. Since there isn’t much information about Loeys-Dietz, she wants to help people find the proper support and resources, so they don’t have to wait as long as she did to find a diagnosis.
Samantha has been an active member of EveryLife Foundation’s YARR program for over two years, where she has traveled to DC to advocate for different health policies in the rare disease community. In her spare time, you can find her teaching swim lessons, swimming, or spending time with friends and family.
She is excited to get more involved with Our Odyssey by helping out with their Facebook and Twitter social media accounts!
Allison Herrity is a patient and advocate from the Washington, DC area. She was diagnosed with Ehlers-Danlos Syndrome, a genetic connective tissue disorder, as a sophomore in college following a seven-year search for answers. Her passion for healthcare advocacy is drawn from her own personal experiences, as well as those of her younger sister who has Complex Regional Pain Syndrome. Issues related to the diagnostic odyssey and managing an invisible illness in higher education are particularly near and dear to her heart.
Allison recently graduated from the George Washington University with a bachelor’s degree in public health and is pursuing a master’s degree in health policy. She currently works at the National Organization for Rare Disorders (NORD) as an administrative assistant and serves as a Community Engagement Liaison for Virginia’s Rare Action Network (VA RAN). Allison represents Our Odyssey in the organization’s partnership with the Ehlers-Danlos Society, co-hosting virtual meet-ups for young adults with EDS.
María José (or MJ for short) comes from a family impacted by Huntington’s Disease and this has sparked her desire to raise awareness of rare diseases in her home country, Colombia, where information and resources are very limited. She is a Communications and Journalism professional, who has recently launched her own business for translating information and creating content in Spanish for the Latin American population in the U.S. She decided to create her own business to combine two of her interests: cultural diversity and languages, while doing something she genuinely enjoys. Prior to launching her own business, MJ worked for a wellness and tech company, performing user research and translations.
MJ has a passion for writing, reading, baking and vegetarian pizza (her favorite!). She loves connecting with people and the outdoors. She is new to the rare disease community and is glad to participate and contribute.
She is excited to be volunteering for Our Odyssey, where she will help identify and compile a collection of resources, from all over the internet, that young adults might find helpful.
Marcelle Longlade is a biomedical engineer and a devoted entrepreneur. She is a passionate advocate for young adults with chronic conditions and disabilities, because Marcelle is one of those young people too. She has been battling with multiple rare chronic conditions from a young age, the main diagnoses being Familial Mediterranean Fever (FMF), Narcolepsy Type 1/with Cataplexy, and connective tissue disorder of hEDS. Growing up in rural Canada, Marcelle felt alone on her journey battling with her complex health conditions. This drove her to create the Chronically Surviving advocacy blog. A place where she shares excerpts from her life, and where other fellow young adults like her feel open to share their stories too.
The second part of her platform and her business is called Asintmah Healing, where she offers yoga and meditation classes, as well as other eastern wellness modalities of energy healing. This isn’t your ‘one-size-fits-all’ kind of mindfulness or wellness offerings. Marcelle knows just how unwelcoming and inaccessible those can be for those like her. She believes we all have the capacity to realistically create more awareness and acceptance in our daily life with the help of mindfulness practices. Marcelle is passionate about this stuff, and especially about carving an accessible path in the mindfulness and wellness community.
She is excited to become more involved with Our Odyssey and taking the lead with the community blog, helping the voices of young adults get amplified and heard. Marcelle believes in the magical healing that happens when we share our stories, and how it helps empower and support one another through our own odysseys.