The RDLA Advisory Committee is comprised of rare disease advocates committed to ensuring that everyone in the rare disease community has a voice and can make an impact on legislation and policy. The committee works to ensure that the advocacy needs of the rare disease community are being served. The committee includes eight community members and the RDLA Program Director.
RDLA Advisory Committee Members
Allison Bones
T.E.A.M. 4 Travis
allison@team4travis.com
Learn more about Allison
Allison (D’Ambrosio) Bones is the President and CEO of T.E.A.M. 4 Travis (Together Ending Asplenia Mortality). T.E.A.M. 4 Travis was born from Allison’s traumatic grief after losing her four-year old son Travis to a rare and undiagnosed genetic disease, Isolated Congenital Asplenia. Travis died in August 2018, five months after colorectal cancer claimed the life of his father, Allison’s husband Jamie. She launched Travis’ foundation with the goal that someday, no other family will stand in her shoes, wondering why a rare disease that no one ever detected could claim the life of their child. The foundation is Travis’ legacy, ensuring Travis’ megawatt smile and exuberant love of life carry on forever.
She is no stranger to tragedy, loss and grief. In a six-year period, Allison lost Jamie and Travis, her father in 2015 after his nine-year cancer battle, her twins Shelby and Dalton in 2012 due to extreme prematurity, and both family pets, Great Dane Ike and Great Dane/Labrador mix Abby. These experiences with traumatic grief over a short time strengthened her determination, courage and faith.
Allison earned a Bachelor’s of Business Administration from Baylor University. During a thirteen-year career at GE Capital, Allison held a variety of roles, including Account Manager for a portfolio of Recreational Vehicle dealerships, each with a commercial credit line in excess of $10 million. Additionally, she has volunteered with Special Olympics, the Salvation Army and the Boys’ and Girls’ Clubs Back-to-School Shopping drives. These educational, professional and volunteer experiences helped prepare her to create T.E.A.M. 4 Travis.
Allison’s passions include cooking, travel, football (particularly the Baylor Bears and Texas Longhorns) and a deep love for Texas, Italy, and the music of Waylon Jennings.
Lisa Deck
Sisters@Heart
isurvivorlisadeck@gmail.com
Learn more about Lisa
Lisa is a four-time stroke survivor who has been a patient activist and keynote speaker for the past two decades. She is a leading lobbyist at the local, state and Federal level for health policy development. She is a widely known advocate voice that inspires others and raises awareness of heart disease, stroke and Moyamoya disease.
Lisa was diagnosed with Moyamoya Disease, a rare cerebrovascular disease, after an 18-year diagnostic odyssey. She underwent two brain bypass surgeries to restore blood flow to her brain. Since then, Lisa has become actively involved in rare disease advocacy. Lisa serves as a Board Member for the Moyamoya Foundation and a Committee member for Rare New England. On behalf of Rare New England, Lisa produces and hosts a local cable show, The World of Rare Disease.
Lisa Deck is a Founder & Director of Sisters@Heart, a non-profit organization that improves the lives of those affected by heart disease and stroke. Lisa is a former Go Red for Women National Spokeswomen for the American Heart Association and currently serves as an Advocacy Board Member for the American Heart Association in Boston and Southern New England. Lisa also serves as a Global Ambassador, sharing her personal experience and patient expertise internationally. Lisa lives in North Attleboro, Massachusetts with her husband and two children.
André Harris
andremarcelharris@gmail.com
Learn more about André
André Marcel Harris is a recent Bachelor of Social Work graduate of Fayetteville State University. Mr. Harris is a Ronald E. McNair Scholar and is enrolled in the MSW/PhD program at the University of Houston’s Graduate College of Social Work with a specialization in Political Social Work. Mr. Harris is a burgeoning, published social science researcher with research interests that are concerned with how social determinants affect the health of sickle cell and rare disease and black men.
Kathi Luis
Amyloidosis Foundation
kathi@amyloidosis.org
Learn more about Kathi
Kathi Luis is a Special Projects Director at the Amyloidosis Foundation, a non-profit located in Clarkston, MI. She is a member of the Community Congress, dedicated to bringing patient organizations, industry leaders and other rare disease stakeholders together. The Congress acts as a strategic advisory council, providing advice and insight on urgent policy issues and Foundation programs and initiatives. Kathi is also a member of the Regulatory Science Working Group, RDLA Advisory Committee and an API Ad Hoc Advisory Board Member.
She refers to herself as “Jill of all trades”, as she handles many different things at the foundation, from the annual report to planning all of the foundation’s events. She also handles the social media, advertising, fundraising and patient resources. She travels to Washington DC to participate in Rare Disease Week on Capitol Hill. Kathi also advocates with members of Congress for rare diseases and the National Institute of Health.
Tonya Prince
Sickle Cell Association of Houston
tprince@sicklecellhouston.org
Learn more about Tonya
Tonya Prince has become one of the most highly respected thought leaders within the sickle cell disease community. It is her distinctive ability to create, contribute, and connect innovative programming with the passion to yield improved outcomes. After spending nearly two decades working for Fortune 500 companies in areas of Managed Health Care and Network Development, Tonya’s insight and trendsetting ingenuity has influenced and inspired many sickle cell disease community-based organizations to not only draw from her expertise but to implement for impact.
Tonya Prince is responsible for landmark legislation passed in the state of Texas for sickle cell disease during the 86th Legislative session and currently serves on the Texas Department of State Health Services Sickle Cell Taskforce, the Rare Disease Legislative Advisory Committee, and the National Small Business Leadership Council.
Steve Smith
WCG
ssmith@wcgclinical.com
Learn more about Steve
Steve Smith is President Patient Advocacy at WCG, a company that focuses on the ethical, safe, and efficient conduct of clinical trials. His son was diagnosed with a rare disease in 1990. He is a seasoned patient advocate with a focus on transformation of the clinical trials process. He helped start the EveryLife Foundation for Rare Diseases to give patients a voice on Capitol Hill with a focus on modernizing the clinical trials process. He first went to speak with legislators and the FDA as a parent in the year 2000, and has not stopped. He was very active as an advocate with many EveryLife colleagues working on passage of the PDUFA V FDA Safety and Innovation Act and 21st Century Cures legislation. He has an extensive career in software, consulting, process transformation, health care systems, clinical trials, and patient-focused drug development.
Sarah Bekins Tompkins
EDS Northwest
Sarah.Tompkins@edsnw.com
Learn more about Sarah
Being an Ehlers-Danlos Syndrome hypermobility type, Sarah knows the challenge of searching years for a correct diagnosis, the frustration of doctors and people close to her not believing her, and the reality of being given a diagnosis for a disease that has no proven treatments or a cure. After losing her best friend, Kellie, to their shared disease (EDS), Sarah dedicated herself to advocating for rare diseases, especially EDS, dysautonomia (POTS), and gastroparesis. To do this, Sarah received multiple stabilizations, surgeries, and procedures to make mobility and traveling possible. Since 2015, Sarah has shared her story in support of rare disease legislation such as 21st Century Cures, OPEN ACT, RARE Act, and Newborn Screening Saves Lives Reauthorization Act. In her home state of Washington, Sarah served as Rare Across America Leader and helped to establish a Rare Disease Day. Sarah serves at an administrator of her EDS Support Group, consisting of hundreds of EDS patients, and is working on launching a patient organization called EDS Northwest. Sarah lives in Bellvue, Washington with her husband, Troy, and their Jack Russel, Wilson.
Marc Yale
IPPF
marc@pemphigus.org
Learn more about Marc
Marc Yale was diagnosed in 2007 with Cicatricial Pemphigoid, a rare autoimmune blistering skin disease. Like others with a rare disease, he experienced delays in diagnosis and difficulty finding a knowledgeable physician. Eventually, Marc lost the vision in his left eye from the disease. This inspired him to help others with the disease. In 2008, he joined the International Pemphigus and Pemphigoid Foundation (IPPF) as a Peer Health Coach. He worked with people to improve their quality of life and encouraged them to become self-advocates. In 2009, he helped develop the Pemphigus and Pemphigoid Comprehensive Disease Profile giving experts insight into the patient perspective. In 2016, Marc became the Executive Director of the IPPF and continues to advocate for all of those affected by pemphigus and pemphigoid. He is a member of the American Academy of Dermatology Drug Transparency Task Force and sits on the Executive Board of Directors for The International Alliance for Dermatological Patient Organizations as their Treasurer.
Marc currently resides in Ventura, California with his wife and daughter.
