Our Team

It takes everyone working together to provide Hope for FRRS1L kids and families. We are thankful to all the volunteers and partners that support this cause.


Board of Directors

  • Viviana Rodriguez

    Viviana is one of the founding mothers of Finding Hope for FRRS1L organization. She currently serves on the board, and as President. She is married and the mother of three children, including two under the age of 15 months, and Arturo who has FRRS1L genetic disorder. In addition to being a full time mom and care giver, she is putting her combined 10 years of experience in Finance and start-up Operations to work to build and expand Finding Hope for FRRS1L. Her dream is to find a cure for FRRS1L and bring hope to families around the world who have children who suffer from this heartbreaking disorder.

  • Chrissy Green

    Chrissy is one of the founding mothers of Finding Hope for FRRS1L nonprofit. She currently serves on the board, and as Vice President. She is married with 3 children, one of whom is Everly that has FRRS1L genetic disorder. When not busy with her first job of being a mom and caregiver, Chrissy uses her 13 years of professional communications experience to help support the work for Finding Hope for FRRS1L nonprofit.

  • Christina Cosic

    Christina is one of the founding mothers of Finding Hope for FRRS1L nonprofit. She currently serves on the board, and is dedicated in helping to build Finding Hope for FRRS1L, with a goal of furthering research and empowering families. She is a mom of two beautiful girls, one of whom has FRRS1L disorder. She is a medical doctor currently completing her residency in Dermatology. Through her own personal experience with her daughter's epilepsy, she has helped to develop a free epilepsy journal app which is currently used around the world.

FRRS1L Gene Therapy Development Team

PARTNERS

Story Path

At Story Path we love seeing brands get the attention they deserve. Every brand has a powerful story nested at its core and we love drawing out that story and encapsulating it into high ROI content creation that helps elevate brand awareness, build customer/client retention and scale sales volume. We do this through highly entertaining video and photo content creation, DIY marketing coaching, and by partnering with trusted white label solutions to make sure your brand gets the attention and traction it deserves. Your story matters, and we want to tell it to the world!

Finding Hope for FRRS1L has partnered with Story Path to help visually tell the story of FRRS1L kids.

UT Southwestern

Dr. Minassian and his research team at UT Southwestern have partnered with Finding Hope for FRRS1L to pursue research and development for gene replacement therapy for FRRS1L gene disorder.

RARE VILLAGE

Founded by two rare disease moms who saw the potential for a better way, the Rare Village is focused on serving rare families in their most important journey – that of their rare disease child.

Finding Hope for FRRS1L partnered with Rare Village while we were awaiting our nonprofit status with the IRS. Rare Village provides a platform for organizations like ours to quickly get started fundraising safely and securely. Rare Village helped us bridge the gap while we were waiting, so that no time was lost in fundraising and getting research started on a cure. Although, Finding Hope for FRRS1L is now an established nonprofit, and we have our own fundrasining platform, we are thankful for the support Rare Village providing in our early years as a nonprofit.