2022 One Rare Experience Speakers and ResouRce Fair Partners

  Amelia Williams is a college sophomore living with several rare conditions, including Ehlers-Danlos Syndrome, Idiopathic Hypersomnia, and Gastroparesis. She began her education at Vanderbilt University, before transferring to Purdue University to pursue a B.S. in Public Health. Amelia’s health advocacy journey began in 2019, when she co-founded the Vanderbilt Alliance on Disability and Condition, a student group dedicated to disability advocacy on campus. Since then, she has become an active member of the Young Adult Representatives of the Rare Disease Legislative Advocates (YARR) where she advocates for policies affecting the rare disease community. As a YARR, she has participated in meetings with members of Congress, a focus group on medical self-advocacy, and a series of trainings to become a member of the YARR Speaker’s Bureau. She is also a 2021 #RAREis scholarship recipient and a Salix Gastrointestinal Health Scholar. Outside of school and rare disease advocacy, Amelia enjoys spending time with her family, playing with her service dog, and doing research on mental health, interpersonal violence, foster care, adoption, and disability

 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 Parks is a chronically ill young professional based out of San Francisco 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 from MedStar Georgetown University Hospital.

Combining her expertise in behavioral health with her lived experience of navigating multiple tertiary hospitals firsthand has led her down the path of studying the impact of medical trauma and medical PTSD on patients and its influence on treatment outcomes. 

In preparation for a PhD applications in medical trauma, Emily founded the organization POP!, where she hosts patient lead discussion groups on all things medical PTSD related in an effort to learn what providers need to know about the mental health side of the patient experience.   

Along with founding POP!, Emily is a Medical PTSD advocate, a patient advocate, and an unlicensed speaker.

Hannah Olson is the Co-Founder and CEO of Disclo, the first software for employers to collect, verify, and manage health disclosures and employee accommodation requests. Hannah’s own experience navigating her career while undergoing intensive treatment for Lyme disease sparked the idea for her first venture, Chronically Capable, one of the largest and most-used disability recruiting platforms. She is known globally for her disability advocacy, with recent features in Forbes, Inc Magazine, FastCompany, and more.

  Seth is a patient advocate, community connector, and motivational speaker who is passionate about bringing 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). With over 12 years of hands-on experience in nonprofit leadership and patient advocacy, he now dedicates his life to helping others along their health odyssey of facing adversity or roadblocks in life.  Seth has a master’s in nonprofit management from DePaul and currently resides in Chicago. Watch his TEDx here and follow him on Instagram here. 

Rob is a former All-American punter at Syracuse and has lived the rare disease journey. A graduate of Syracuse University, Rob pursued a Masters in New Media Management from the S.I. Newhouse School of Public Communications. He also received a B.S. from the Martin J. Whitman School of Management. Rob played football all four years for the Orange and was voted team captain by his teammates his final two seasons. He became the second Executive Director of Uplifting Athletes at the end of 2018. Rob has a steadfast commitment and connection to the Rare Disease Community as a rare brain cancer survivor

  Kendra is the marketing communication specialist at the Center for Disabilities at the University of South Dakota Sanford School of Medicine in Sioux Falls, South Dakota. She is an author and spokesperson on living a life with a rare disease and disability. Kendra is the founder and executive director of the nonprofit organization, Rare by Design. She is an Augustana University graduate with a double major in Sociology and Psychology. Her career blends the two worlds in which she grew up: medicine and education. Kendra’s memberships on numerous boards, advisory groups and professional societies keeps her actively engaged locally, state-wide and nationally.

She has defined her life by a positive outlook and success in overcoming obstacles. Kendra refuses to be defined by Mucopolysaccharidosis (MPS)—the rare genetic condition she has had since birth. Kendra enjoys a stylish outfit and shoes to match as she strives to make a difference. One of her favorite colors is yellow which embodies her life motto: When life hands you lemons, make the BEST lemonade possible!

  Lynsey has spent her career at the nexus of partnership building and policy development aimed at one goal: accelerating precision medicine to fill an unmet medical need for people living with rare diseases. Currently, she is the Head of Impact at Rarebase PBC partnering directly with patient-led foundations to develop personalized therapies. Formerly, she led the inaugural precision medicine portfolio at the World Economic Forum, driving forward public-private partnerships to shorten the diagnostic odyssey. She is also the former Founder and CEO of a patient advocacy non-profit where she implemented new models for increased patient support across hospital systems. Prior to that, she served as a health policy advisor in the United Kingdom's Parliament, House of Commons and California Governor's Office. She was one of 100 entrepreneurs selected from across the USA for the prestigious Venture for America fellowship. Lynsey holds a BA from Claremont McKenna College; MSc from the London School of Economics and Political Science. Lynsey is a spokesperson and life-long patient advocate for Shriners Hospitals for Children.

 Chris Bombardier is executive director of Save One Life, an international nonprofit that provides direct financial aid to patients with hemophilia in developing countries. Chris was a board member of Save One Life from 2012 to 2019. During that time, Chris was actively involved on the program and scholarship committees. A mountaineer, Chris became the first person with hemophilia to successfully climb the Seven Summits including Mt. Everest and dedicated his climbs to raising funds for Save One Life. He eventually raised over $250,000 and helped 75 children receive sponsorships.
Chris began his career as a professional research assistant with the University of Colorado Hemophilia and Thrombosis Center after graduating from Doane College with a bachelor's degree in biology. He later worked with GutMonkey, an experienced-based education company that works with people with chronic medical conditions. Through his travels around the world for the Seven Summits, and his work with Save One Life, Chris discovered his passion for global health work and returned to school. He recently earned his master's in global health from Northwestern University in 2020.
During Chris's climb of Mt. Everest a documentary crew followed his journey and created the film, Bombardier Blood. This film has been screened at dozens of bleeding disorder community events, film festivals and is now available to stream on most platforms

  Alan is an entrepreneur fighting Duchenne Muscular Dystrophy. He graduated from Bentley University in 2013 with a Management Degree and has been a big part of All Wheels Up since 2014 working alongside Michele its founder. Alan is very active in the Duchenne Muscular Dystrophy Community and serves on the Parent Project Muscular Dystrophy Adult Advisory Council representing the voices of adults living with Duchenne and Becker Muscular Dystrophy in PPMD’s legislative, policy, and program activities.

As COO his responsibilities include building and managing the marketing and social media team, managing the website and donation system, building the CRM and donor database, research of aviation, regulations, wheelchair industry, traveling with a wheelchair, laws, giving talks and interviews about All Wheels Up, fundraising, serving on the development committee, helping build the wheelchair advisory committee, and attending events with industry, regulators, and government

From the beginning of his time at All Wheels Up, Alan knew it was possible for wheelchairs to fly in the cabin of airplanes and what was needed was research and an organization focused solely on proving it could be a reality. The work of All Wheels Up led to a feasibility study in 2021 that proved there were no design and engineering challenges so formidable that they call into question the technical feasibility of an in-cabin wheelchair securement system and the value of exploring the concept further.

Disability Advocacy and Inclusion drives Alan to be a leading voice for what needs to change. One of Alan’s biggest motivators at All Wheels Up is for people who use wheelchairs to freely and independently travel around the world. The future for accessible travel is incredibly bright and having wheelchairs fly in the cabin will dramatically change the entire travel industry.

   Prior to her illustrious career in healthcare and hospital administration in Boston, Sumaira worked as an actor/model in Hindi-/Bengali-language media, primarily in southeast Asia. Sumaira is a classically-trained Kathak dancer and has performed in prestigious venues including Madison Square Garden, the Kodak Theatre, Santiniketan, and the Rudolf Steiner Theatre. 

In the summer of 2014, Sumaira was diagnosed with sero-negative neuromyelitis optica spectrum disorder (NMOSD)/chronic relapsing inflammatory optic neuritis (CRION) after experiencing sudden and severe vision loss and weakness/numbness. Less than two months after her diagnosis, she founded The Sumaira Foundation (TSF). TSF is a nonprofit organization dedicated to raising global awareness of NMOSD and MOG-AD, building communities of support for patients and their caregivers, leading patient advocacy efforts, and fundraising to support breakthroughs in research. TSF has over 40 patient ambassadors around the globe and is currently active in the USA, Canada, Europe, and now Asia.

In 2015, Sumaira was crowned the 1st Miss Bangladesh-USA advocating for equal opportunity education for Bangladeshi children in efforts to increase tolerance and strengthen the country’s international presence, economy, and infrastructure. 

In September 2021, Sumaira was honored with WEGO Health’s “Best Kept Secret” Award recognizing her advocacy work in rare disease. 

In October 2021, Sumaira was featured in a Wall Street Journal article about Medicare’s drug-pricing debate. In February 2022, she will be prominently featured in an Emmy Award winning show on a major television network.

   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. 

  Hey my name is Yuva! I’m a 20 year old living with Duchenne Muscular Dystrophy. I’m entering my sophomore year at the University of Pennsylvania where I’m studying computer science. Don’t worry, I am a total nerd. Apart from writing code, I love playing chess and have been playing for as long as I can remember. In our session I hope to teach you all bit more about the awesome game of chess!

   Chelsea is a recent Business Management and Psychology student at the University of Aberdeen. She was diagnosed with Lupus eight years ago at the age of 14 and since then, has also been diagnosed with Lymphocytopenia and Hypermobility. She thrives on advocating for chronic illness and disability, where she uses her love of writing to passionately write articles for her old university magazine (Her Campus) and in an internship with INJECTION magazine. She is extremely involved with the chronic illness community, where she is the administrative volunteer for Cards for Bravery who delivers uplifting cards to hospitalised children and was a student notetaker for disabled students during university. Now, she is the Youth Coordinator of RARE Youth Revolution, where she is excited to continue to raise awareness for rare diseases. In her spare time, she likes to dive into creative pursuits of crocheting and drawing, which eventually lead to her starting her own Etsy store.  

  Shannon has nearly 20 years of development and communications experience in both the for-profit and non-profit sectors. She possesses hands-on expertise in all aspects of development, including grant writing, donor cultivation, stewardship, managing events, social media and marketing. She has successfully raised millions of dollars for clients at the local and national level.

For the last five years, Shannon has worked within the rare disease community, both as the Advancement Advisor for the Yaya Foundation for 4H Leukodystrophy and for five years with the Jett Foundation, which serves youth, adults and families impacted by neuromuscular disorders, including Duchenne, Becker’s, SMA, Friedreich’s Ataxia, Limb Girdle, and Myotonic muscular dystrophy, among others. As Jett’s Camp Promise Program Development Director and later the Development Director for the entire organization, Shannon developed and implemented targeted programs for children and adults impacted by neuromuscular disorders as well as their families and caregivers. In addition to leading program and strategic development efforts, during her tenure, she led fundraising efforts to enhance donor stewardship and retention and solicit donors that resulted in more than $2 million in revenue across philanthropic sectors including the pharmaceutical industry, individual donors, foundations, and corporations. 

Prior to Jett Foundation, for 10 years Shannon served as the Marketing and Sales Communications Director for Exeter Group, a global IT consulting firm based in Boston. While there she successfully secured nearly $50 million in revenue as part of large-scale government, higher education, healthcare, and private sector proposals. 

She is a strong advocate for the disability and rare disease communities, and currently serves as Board Development Chair for All Wheels Up, which seeks to make air travel accessible for all.

Shannon lives with her husband and two children outside of Boston.

  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. 

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.

Our Odyssey's mission is to connect young adults impacted by a rare or chronic condition with social and emotional support in the hope of improving their quality of life.  Our vision is to establish a national organization with a platform that empowers, educates, and connects young adults experiencing health challenges.  

And our values are Collaboration, Empowerment, Belonging, Hope, Purpose-Driven, and Inclusivity. 

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.

 To bring about a dramatic and wide reaching change in conditions and attitudes for the rare disease community. It's time to turn the tide!

The RARE Youth Revolution is a dedicated news platform for young people to access relevant content centred around rare diseases.

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Approximately 400 million people worldwide live with a rare disease, almost 50% of these are children and young people, and many more may be a young carer, supporting a loved one.

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This platform is powering up young RARE voices to be heard and empowering a future generation of rare disease advocates.

 
Rare by Design is a nonprofit organization that works towards creating awareness, inclusion and representation for individuals with a rare disease and disability. We focus on living life positively to support our community and their families. Founded on the belief that everyone should celebrate the rare that makes us unique and extraordinary. Our events strive to foster community engagement for individuals with rare diseases and disabilities. 

Supporting Rare by Design means you are giving back to local and national nonprofits that assist research, human growth, self-advocacy and empowerment.

Education Programs for Patients and Caregivers

At PTC, our goal is to ensure not only that families have access to education in its various forms, but also to recognize that community is important to one’s rare disease journey. Our education programs – Insightful Moments and Navigating Duchenne – create a patient and caregiver platform that helps families connect and learn from one another’s experiences. We endeavor to provide the knowledge and skills essential to living life to its fullest, and caring for a loved one, with a rare disease. 

Insightful Moments™ is a community education series of programs and materials created to support patients with rare disease and their families. The programs empower patients and families through different learning styles and communication methods.

This content includes complimentary virtual webinars, videos, and handouts that address many different aspects of living with rare disease. Themes include: holistic approach to caregiver wellness, sibling support, access to higher education, and various other life skill topics. Our health literacy learning includes programs on navigating insurance, advocacy, understanding clinical trials and the basics of gene therapy. Our emotional wellness series addresses mental health awareness and social well-being support through a series of training events.

Navigating Duchenne™ is an educational program series that addresses a variety of topics to help patients, families and caregivers navigate their journey with Duchenne muscular dystrophy. It empowers, supports, and creates community for patients, families, and caregivers. Our programs are available at no cost and consist of videos, in-person sessions and virtual webinars.

Navigating Duchenne topics have included:

• Understanding and Managing Behavior in Duchenne
• College Options for Individuals with Physical Disability
• Healthcare Transitions
• Nutrition Implications and Planning

All Wheels Up currently is the only organization in the world Crash Testing Wheelchair Tie Downs and Wheelchairs for Commercial Flight.

Our President Michele Erwin created All Wheels Up in 2011 trying to arrange a trip to Disney World with her son Greyson who has SMA. After experiencing the difficulties of traveling with a Wheelchair, she knew something needed to be done and embarked on the journey of getting wheelchairs crash tested for Accessible commercial flight.

We ultimately found out existing wheelchair restraints from Q’Straint used in Accessible Cars and Buses can exceed the FAA requirement of 16 G’s. We are now getting started on working with regulators such as the FAA, Airlines, Airplane Manufacturers, and Congress to see how we can make Airplanes Accessible.

Being able to fly on Airplanes from the safety of your Wheelchair is something the disability community has wanted for years. Air Travel currently is a nightmare for us and many don’t even fly because of bad experiences; Wheelchairs get damaged constantly and even sent to the wrong airport and Airlines spend millions every year repairing them.

Our solution is for those who use electric wheelchairs, as well as properly modified Manual Wheelchairs, to independently maneuver themselves onto the plane with dignity and safety