LEAP into Advocacy Virtual Conference

OPTIMIZING YOUR ADVOCACY OPPORTUNITIES

3.5 CEUs are available for this event.

THURSDAY, JUNE 10, 2021

10:00 AM – 2:00 PM CST

The LEAP into Advocacy Virtual Conference is hosted by the E.WE Foundation’s LEAP Program. LEAP is a Literacy, Education, & Advocacy Program promoting personal and organizational literacy, positive peer-to-peer interactions and behaviors in children & adults with differences, and effective communication between patients and their healthcare providers.

The LEAP into Advocacy conference is designed for individuals with rare diseases, special needs, & other disabilities and their caregivers. Social service workers and healthcare professionals can also gain insight from the information being presented. Everyone is welcome to attend. To learn more or submit questions in advance, please email info@theewefoundation.org.

Featured Speakers & Guests

  • Kristen Angell, Associate Director of Advocacy at the National Organization for Rare Diseases (NORD)
  • Allison Bones, President/CEO at T.E.A.M. 4 Travis
  • Bruce Korf, MD, Associate Dean for Genomic Medicine at UAB School of Medicine, Chair for Alabama’s Rare Disease Advisory Council
  • Parvathy Krishnan, Foundation Alliance Manager at Global Genes
  • Katelyn Laws, Rare Disease Legislative Advocates Program Coordinator at EveryLife Foundation for Rare Diseases
  • Christine Matus, Special Needs Attorney at the Matus Law Group
  • Carlie Stein Somerville, MD, Medical Director at UAB STEP Program
  • Shannon Von Felden, Director, Rare Disease Legislative Advocates at EveryLife Foundation for Rare Diseases

AGENDA

Moderator: John Hart, E.WE Foundation, Board Chair

10:00am Welcome & Announcements

10:05am Marianne Butt, Director of Programs, E.WE Foundation 

10:15am Sarita Edwards, CEO & President, E.WE Foundation

10:30am Parvathy Krishnan, Foundation Alliance Manager, Global Genes

Moderator: Katelyn Laws, RDLA Program Coordinator, EveryLife Foundation for Rare Diseases

11:05am Allison Bones, CEO & President, T.E.A.M. 4 Travis Foundation

11:25am Shannon Von Felden, RDLA Program Manager, EveryLife Foundation for Rare Diseases

BREAK 11:55am – 12:10pm

Moderator: Shane’ Jackson, ZEBRA Coordinator, E.WE Foundation

12:15pm Kristen Angell, Associate Director of Advocacy, National Organization for Rare Diseases

12:30pm Dr. Bruce Korf, Associate Dean for Genomic Medicine at UAB School of Medicine, Chair for Alabama’s Rare Disease Advisory Council

12:45pm Christine Matus, Special Needs Attorney, Matus Law Group

1:15pm Dr. Carlie Stein Somerville, Medical Director at STEP (Staging Transition for Every Patient) Clinic at UAB.

1:45pm Kareem Edwards, VP of Operations, E.WE Foundation

SPEAKER BIOS

Kristen Angell

Kristen Angell is the Associate Director of Advocacy for the National Organization for Rare Disorders (NORD). Kristen oversees the Rare Action Network (RAN) program at NORD. RAN is the grassroots advocacy arm of NORD. ​She works with rare disease patients, families, ​organizations, ​industry leaders, medical professionals and ​elected officials spanning across all 50 states on public policy and advocacy initiatives to improve the lives of those impacted by rare disease.​ With over 15 years of advocacy and volunteer management experience, Kristen is devoted to empowering individuals in the community to advocate for change and raise awareness on many social issues.​ ​​She has been a freelance graphic designer for over 23 years and regularly lends her design and non-profit expertise to numerous charitable organizations within her own community. She lives with her family in Southbury, Connecticut. 

Allison D’Ambrosio Bones

Allison D’Ambrosio Bones is the President and CEO of T.E.A.M. 4 Travis (Together Ending Asplenia Mortality). ​She founded the organization in the months after her 4-year old son Travis died from an undiagnosed rare disease, Isolated Congenital Asplenia. It was never detected Travis was born without a spleen. This primary immunodeficiency leaves children vulnerable to life-threatening infection. In his memory, T.E.A.M. 4 Travis provides education, awareness and advocacy. One of their long-term goals is to change the way the spleen is detected through prenatal or newborn screening. Allison brings to the organization a marketing degree from Baylor University and thirteen years of progressive experience working at GE Capital. In the last two and a half years, she has become a champion for Rare Disease Advocacy, serving on RDLA’s Advisory Committee and being featured in Engage Health’s Rare Disease Difference Maker and Uplifting Athletes’ blog.

Parvathy Krishnan

Parvathy Krishnan is the Foundation Alliance Manager for Global Genes. She earned her MS from Rutgers University, NJ and her clinical training from Mayo Clinic of Health Sciences, Rochester, MN. She has worked as a clinical dietitian at Duke University Medical Center and has gained experience in the nonprofit world from her role as a Patient Engagement/Advocate in NC. Parvathy is a speaker, panelist and often serves on national and international efforts to promote patient and caregiver experience. As a mom to two medically complex children (Yash and Ira), Parvathy is passionate in helping others find their voice and message. She loves sunshine, gardening and traveling.

Christine Matus

Christine Matus is the owner and founder of The Matus Law Group. Christine was admitted to the Bar of the State of New Jersey and to the U.S. District Court of New Jersey in 1995. Christine is a member of the New Jersey State Bar Association and a Board of Trustee of the Ocean County Bar Association. She is also a member of the Asian Pacific American Lawyers Association and the American Bar Association where she serves on its Advisory Panel. Dedicated to public service, Christine is an active mediator with the Superior Court of New Jersey, Special Civil Part, a volunteer for Caregivers, Inc., a Eucharistic Minister, Board Member of the Ocean County YMCA, and a member of the Central Ocean County Rotary.

Dr. Carlie Stein Somerville

Carlie Stein Somerville is a Birmingham native and received her doctorate from the University of Alabama at Birmingham in 2013. She completed Internal Medicine and Pediatrics Residency in 2017 and served as Chief resident during her final year of residency.  She is now a dual board certified Internist and Pediatrician and an Assistant Professor in the Department of Medicine and Department of Pediatrics. She currently serves as the Program Director to the Med-Peds Residency Program. She is passionate about primary care across the lifespan, care of underserved patients, advocacy and improving transition for teens and young adults with chronic diseases of childhood as they move from the pediatric to adult health system. She is the medical director of a new multidisciplinary STEP (Staging Transition for Every Patient) clinic.  Outside of work, you can find her spending time with her husband and two sons, biking, enjoying the outdoors and all that Birmingham has to offer! Email: chstein@uabmc.edu

Shannon von Felden

Shannon von Felden is the Director of Rare Disease Legislative Advocates, a program of the EveryLife Foundation for Rare Diseases. She works with rare disease advocates across the country to engage at the local, state, and federal level. She began her career on Capitol Hill as a Legislative Assistant for Congresswoman Shelley Berkley (NV) working on health care and veterans affairs issues. Shannon has worked with national nonprofit organizations to further their policy and advocacy goals including Juvenile Diabetes Research Foundation and National Osteoporosis Foundation. She received her Master of Public Policy from American University.

FEATURED GUESTS

This event awards 3.5 CEUs. The E.WE Foundation is an approved Alabama State Board of Social Work Examiners Continuing Education Provider. Eligible participants should only claim the credit commensurate to their attendance.