Our 2021 One Rare Virtual Experience Speakers/Presenters

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 her F.A.P. and desmoid tumor diagnoses, statistically speaking, she's four in a million. Patient advocacy fills the void left by her cancerous colon and her job title. As Patient Advocacy Manager at Horizon Therapeutics, 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 discussing F.A.P.

Lilly is recognized as a leading voice in the rapidly growing patient engagement field, having built award winning patient ambassador programs and powerful awareness campaigns that united patients and industry. She has served as an advocate for over a decade, transitioning into patient advocacy after she was diagnosed with multiple autoimmune diseases.

Lilly is the Founder & Principal at Patient Authentic where she helps healthcare companies authentically engage with patients and build movements to drive brand awareness and product adoption. Prior to founding Patient Authentic, Lilly served as the Head of Client Relations at Savvy Cooperative and lead Patient Advocacy at Clara Health where she conceived and executed patient engagement strategy and ensured the patient voice remained firmly at the center of the company. She has served in communications and advocacy roles across industry from the Institute for Healthcare Improvement to MassBio.

 Lexi Pappas is an advocate for and is also diagnosed with FSHD, a type  of Muscular Dystrophy. In 2016 she released a documentary sharing how her family deals with FSHD daily, and the struggles that come along with  it. The documentary now has over 50,000 views on YouTube and was  featured on the local news and many other sites. Since then, she has  spoken in front of the FDA and NIH, collaborated with multiple research  companies, created YouTube videos, held fundraisers, and made  relationships with others living with FSHD along the way. In daily life,  Lexi is a video editor and producer at Dell Technologies, and  volunteers her time editing videos for non-profit organizations. 

Shane Burcaw and Hannah Aylward are relationship vloggers on a mission to change the way society understands disability. On their YouTube channel, Squirmy and Grubs, which has garnered 450,000+ subscribers and worldwide media attention in its first year, the couple shares a hilarious and authentic examination of what it’s like to be in an interabled relationship. Shane lives with a form of muscular dystrophy that requires him to use an electric wheelchair. Hannah is able-bodied and provides the majority of Shane’s daily care. Together, they are really no different than any other couple. They argue, they laugh (a lot), and they support each other. But even while posting hundreds of hours of video about their life together—traveling, going on dates, figuring out adulthood—society still has a hard time accepting their love.

The duo’s presentation will focus on the true reality of being in an interabled relationship, including some highlights and lowlights from their own personal love story. Their intention is to identify and debunk the damaging misconceptions and stigmas that society holds about disability.

Abby Brockman is a pediatric trauma chaplain who credits her lifetime of camp experience, including working specifically with youth and young adults with muscular dystrophy, as the true spirit of her work. She is passionate about helping others find their voice, stepping into their leadership potential, expanding their sense of possibility, and turning minutes into moments and moments into magic. But she also loves words. Like, really loves words. Even the boring ones. Which means she gets excited about things like helping people turn their resume drafts into something truly remarkable and memorable. What starts with making sure there is a narrative and every word earns its spot on the page, ends with something you can confidently submit in the direction of your dreams. 

 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. He does not have a podcast. 

 The Young Adult Representatives of Rare  Taylor Kane is the founder and president of Remember the Girls, an international non-profit organization that unites, educates and empowers female carriers of X-linked genetic disorders — a group that is often overlooked by the medical profession. Taylor’s activism began shortly after her father died from the rare X-linked disease Adrenoleukodystrophy (ALD) and she learned she was a carrier. A recent summa cum laude graduate of The George Washington University, Taylor is an award-winning activist, an accomplished speaker, and author, having recently published a memoir, Rare Like Us: From Losing My Dad to Finding Myself in a Family Plagued by Genetic Disease.

 Online meet-ups are an opportunity to connect young adults impacted by rare or chronic conditions to one another virtually.

   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 the age of 20, Seth also tested positive for the disease and is a gene carrier. He has been involved in the HD community for over 10 years 

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 public 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 find the proper resources to help deal with the everyday challenges. His hope is to be a mentor for young people who face adversity by sharing how taking control of his Huntington's Disease journey has given him opportunity, fulfillment, and hope.

Reach out to Seth at: seth@ourodyssey.org or LinkedIn

 CellAssociationofAmerica(SCDAA).CarlaLe to impact interest and funding research for rare diseases.Carla advocates with Rare Disease Legislative Advocacy (RDLA) & National Organization for Rare Disorders (NORD) to educate & promote legislation that encourages more effective,efficient,and up-to-date healthcare policies. In Carla Lewis’s spare time,she enjoys reading,spending time quality with family,friends& staying active at her home church, Majestic Life Church. Carla enjoys educating the community offering help, hope & empowerment. 

  Channell- Semira Javorsky is a dedicated advocate, mother, and wife. Channell -Semira better known as Semira, defines herself as an ambitious African – American women and sickle cell warrior. Semira lives with sickle cell disease – SS. Semira’s journey of life includeshealth
challenges and growing up in foster care. She later was adopted by her current beautiful family. Semira uses her experience to help others. Semira is a crisis counselor for women and children
of domestic violence. She has been in that field of work for about 10 years. She also volunteers at Kids Conquering Sickle Cell Disease Foundation. Some of Sermira’s accomplishments include graduating high school and receiving the presidential outstanding community service award. She also received a $3,000 scholarship award through the Judge Lois Haight Foundation who awarded scholarships for foster youth who beat the odds. Semira completed 3 years of college, but she was unable to finish due to her health
challenges. She looks forward returning to college within the next year or so to earn her bachelor’s degree. Semira believes that she was called to advocate. She states, “Advocating is what I do for work
now and it’s what I feel in my spirit that God has called me to do. While I do understand that we all have a story to tell, I am a firm believer in the saying that God gives us all what we need to survive. My story is one of many; tragedy to triumph, but what sets me apart is that I use my
experience to educate and uplift others. It is what motivates and keeps me driven even when I feel like I can’t. I do it because of others in need.” Semira has had countless hospital admissions, surgeries, and overall challenges with her health,
but she believes she is completing her purpose in life by advocating. She believes she has been blessed to have a wonderful support system behind her; a great husband and supportive family,
but she did not always have that. Semira knows how it feels to be on both sides of the spectrum, so she is determined to educate and support others.

   Amy Aikins works at the Little Hercules Foundation to assist families in obtaining access to needed services, therapies and equipment. She is an experienced professional with a history of work in both public and non-profit sectors, and has held roles in program management, rare disease advocacy, public benefits (i.e. Medicaid/Medicare), community resources and quality management. As the mother of a son living with Duchenne, she has particular interest in improving access to necessary treatments, therapies and equipment for rare disease patients. She resides in Pennsylvania.

 Jennifer Shumsky is Director of Payor Relations at Little Hercules Foundation. An RN by training with many years of experience working in the insurance industry, Jen is passionate about helping rare disease patients gain access to necessary treatments, including medications and equipment. She is the mother of a son living with Duchenne muscular dystrophy and a daughter living with T1D. She and her family reside in Michigan.

 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. Anna has lobbied on Capitol Hill leading a team of Kentuckians advocating for vital rare disease and healthcare legislation. 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. She is a powerful advocate, educator, and speaker and plans to continue advocating for years to come!  

Join Terri Wilcox to learn more about Patients Rising. 

Patients Rising was launched to fight for access to vital therapies and services for patients with life-threatening diseases.  This patient advocacy organization will educate, advocate and communicate the importance of access to essential treatments and diagnostics. We will be focused on ensuring that the patients’ voice is heard, access to new therapies is paramount, and the pipeline of progress is not threatened. 

Anne Barry Jolles is a renowned life coach of 20 years, solopreneur, CEO, TEDx speaker and international award-winning author whose work has been seen in Good Housekeeping and is used by individuals, communities, organizations and Fortune 500 companies alike!   She thrives on working with courageous people wishing to transform the way they live, work and lead, and are willing to do what it takes to get there.  

Blending life experiences and research, Jolles created a resiliency model called the Grace Trail® and has shared it with thousands as it has evolved for more than a decade.  Grace Trail has become a global movement, with trails, in various forms, being created all over the world.  Anyone can “walk it or just talk it” anywhere, anytime, simply by asking the 5 Grace Trail questions to access joy, hope and resiliency…. no physical trail necessary! Tens of thousands from around the globe are already taking steps towards their best lives and their best work, using skills learned from Grace Trail webinars, workshops, products, retreats, on-line courses and more. 

In 2015, Anne created and ran a Grace Trail through the 2015 Massachusetts Conference for Women for 13,000+ conference attendees.  Summer 2016 saw her bring the Grace Trail to the Rose Kennedy Greenway, in Boston, with a special installation that was seen by over 10,000 FIGMENT festival-goers.  In October 2016, she presented "Cracking the Grace Code" at TEDx Wilmington Women, appeared in Good Housekeeping in June 2018 and much more.  

Jolles was named Life Coach of the Year 2013 by the International Coach Federation of New England. Anne’s model is presented and shared in her international award winning, bestselling book, “Grace Trail, Find Your Footing and Move the Life You Were Meant to Live”. Anne is a sought-after, entertaining and inspirational media guest who has been featured by Good Housekeeping, Recovery Today Magazine (cover), NPR, Boston Globe, South Shore Living, Huffington Post, and the Patriot Ledger.  Through Anne’s workshops and presentations, she has spoken to thousands of people, helping them take 5 steps towards their best lives through her message of courage, hope, and resiliency.  

Jolles earned a B.S. in occupational therapy from Boston University and an M.B.A. from Simmons College Graduate School of Management. She was awarded her ICF Professional Coach Certification (PCC) in 2000 and and received her Certified Professional Co-Active Coach (CPCC) certification from Coaches Training Institut

 As a financial professional, Scott works with a variety of clients to gain clarity on their overall financial situation. Using financial and insurance strategies to solve complex problems, Scott helps clients achieve their longterm financial goals. Scott received his Bachelor of Science in Business from the University of Massachusetts Amherst, and his MBA from Babson College. He holds a Series 6, 65, 7, and various insurance licenses, and has advanced designations from The American College (CFP®, ChFC®, CLU®, CASL®). Scott lives in Southern Vermont, which is culturally rich and diverse, with his wife, two children, and a variety of animals. He is an active member of the community, and involved with the Brattleboro Boys & Girls Club, as well as The New England Youth Theatre. 

 Join Erin from Backpack Health to learn about managing your health data!

Backpack Health makes it easy for individuals to manage, own and share health information for themselves and their families. And we provide a platform for organizations to engage patients, collect up-to-date data and build communities across the globe. 

 Erin Smith serves as a Senior Project Manager for Subscriber Services with  Backpack Health. Erin lives in the greater Boston area with her husband  Topher and two children, Hattie  & Ben. She is most passionate about improving access to health care  and tools that support wellness for vulnerable and underserved  populations. As a project manager she gets to fulfill that passion  working directly with nonprofits and foundations to create  specialized groups within Backpack.  

  Having undergone multiple surgeries, and lived with chronic pain since the age of two, Miranda developed coping techniques to manage her pain without the use of painkillers. Thirty years later, she is transferring this knowledge, by merging it with virtual reality and other assistive technologies. As a serial entrepreneur and award-winning designer, she is able to deliver projects from research, to sketch, to spec, to build. 

Amy Hansen is a Rare Disease Advocate from California. She is an Ambassador for Positive Exposure Foundation, where she blogs about living with (not suffering with!) a rare disease. She is also an Ambassador for Best Day Foundation, which creates adventure experiences for youth with special needs. Amy has xeroderma pigmentosum/trichothiodystropy (XP/TTD) complex.
https://titaniumamyblog.wordpress.com/

Dan Pezzetta is a 21 years old living with Aortic Stenosis. He is currently a rising senior at Hartwick College that is a major in English Literature, Political Science, and Education. His goal is to work on policy focusing on healthcare and education. His goal after undergraduate is to pursue his PhD. in Public Policy and Administration, and work with government officials to make sound policy, as well as teaching as wanting to teach as a professor. He hopes he can help teach you all ways to contact legislators in these current times, and how to have your voice heard!

https://everylifefoundation.org/young-adult-representatives/members/yarr-members-new-jersey/

Lindsey is the Associate Director of Patient Engagement at the EveryLife Foundation for Rare Diseases. She serves as the program director of YARR, Rare Artist and the #RAREis Scholarship Fund. About two weeks after she started working at EveryLife, her father was diagnosed with a rare neuromuscular disease called Myasthenia Gravis. Her favorite part of her job is working directly with advocates and helping them find their voice in advocacy!

Swapna is the EveryLife Foundation’s RDLA State Advocacy Fellow and is a member of the Young Adult Rare Disease Advocates (YARR). Swapna was diagnosed with Short Bowel Syndrome, a chronic GI rare disease, at birth 30 years ago, and has lived with supplemental intravenous nutrition and tube feeding her entire life. In 2014, she had a small intestine organ transplant. Swapna, a recent Master’s in Public Health graduate from The University of Alabama at Birmingham, is also an accomplished speaker and advocate. Swapna through her platform, Swapna Speaks, has given several presentations across the world to various healthcare events, including, a TEDx talk. Swapna, does healthcare advocacy work at the federal and state level for the Short Bowel Syndrome and broader rare disease community. In 2017, she founded Alabama Rare, a grassroots state organization to unite Alabama around the rare disease population. 

Paulo Concepcion is an expert yoga teacher. He has completed the 500-hour yoga teacher training with Yoga Alliance to become 500RYT Yoga Teacher Certified. He has studied Hatha Yoga, Vinyasa Flow Yoga, Pregnancy Yoga, Tapasya Hot Yoga, and is specially trained in Adaptive Yoga. He believes yoga is a personal journey. “My philosophy is to share the joy of yoga so that the student can explore, experience and empower both themselves, and others through yoga practice.” 

https://pauloyoga.com/ 

 Deborah Vick is a proud mother of two young boys. She has and  continues to overcome the challenges presented by Myasthenia Gravis,  Ehlers Danlos, Dysautonomia, severe chronic pain, severe reverse  kyphosis, and spinal stenosis. She fights these, as well as a myriad of secondary disorders, with the love and support of her family and friends. 

Deborah  volunteers with patient advocacy organizations to help raise awareness  and promote education programs. Deborah organizes youth programs,  improves accessibility in her local community, serves as a leader in the  Scouting Community, and is a member of the Morgan Hill Leadership program. 

Deborah raises awareness for legislative issues for the  disabled population and the community as a whole. Deborah earned her  B.A. in Political Science and M.Ed. with a focus in Higher Education and  Diversity Affairs. Throughout her post-secondary endeavors and while in  law school, she volunteered and interned in local, state and federal  legislative offices as well as clerked for a judge in the EEOC and  volunteered as a civil rights mediator with the Arizona State Atty.  General’s office. She strives to show her children and people of all  ages that we may need to adapt to achieve one’s goals but that we may never give up.

  Michelle Rivas is a Latina blogger and storyteller, adjunct professor at  DePaul University’s College of Communication in Chicago, and a health  communications professional in the biopharmaceutical field. At Horizon  Therapeutics, Michelle  manages the company’s rare disease communications program, #RAREisTM, 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.  

 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. Naturally  becoming a passionate advocate for young adults with chronic conditions  and disabilities in the process, 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 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/rare conditions in the meditation and yoga community. This meant  a lack of professionals able to safely lead vulnerable people through a  meditation or yoga session. 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 an especially profound impact on Marcelle’s life as it has for  countless others for millennia. It has especially helped her attitude  towards her chronic pain and some of her other debilitating symptoms,  and it helps her maintain clarity of mind, easing her symptoms of  anxiety. Meditation provides a platform for empowerment, and is a way  for Marcelle to renew her self-esteem, and has brought more moments of  peace to her life and to those she teaches. And the best part is we  don't need anything other than our own bodies, breath and mind! And  maybe a cushion or two to make it comfy. Marcelle is deeply passionate  about mindful meditation, and is inspired to lead you through a session  and discuss the plentiful benefits of meditation, breathing, and  mindfulness.