Genesis Jones

January 5, 1999 – August 11, 2026

Beloved daughter, granddaughter, niece, friend, musician, writer, student, advocate, and warrior, passed away on August 11, 2026. In 27 years, Genesis built a life defined not simply by what she endured, but by what she created from it: purpose, connection, advocacy, and meaningful change.

Born January 5, 1999, in Irving, Texas, to AJ Jones Jr. and Gloria Shelton, Genesis was curious, creative, determined, and deeply driven from an early age. She loved music and photography and spent part of her high school years at a Fine Arts Academy, where she developed her talents as a violinist. She attended Grapevine High School before continuing an academic journey that reflected her lifelong interest in people and the human experience.

Genesis earned an associate degree from Texas Woman’s University, a bachelor’s degree in Child Development and Psychology from the University of Texas at Dallas, and, in May 2026, a master’s degree in Psychology from Lamar University.

The Woman She Became

Genesis was a lifelong learner, musician, author, storyteller, and compassionate advocate who understood the power of making people feel seen and heard. She was a self-published author and contributed to collaborative works sharing the lived experience of sickle cell disease (SS). Through her writing, photography, music, and public speaking, Genesis found many ways to connect with others and tell stories that mattered.

She was also a woman of extraordinary determination. Diagnosed with sickle cell disease (SS) at birth, Genesis spent much of her life navigating challenges few could imagine. In 2020, she underwent a life-saving stem cell transplant and later survived post-transplant lymphoma. Yet her medical journey was only one part of her story. Genesis transformed those experiences into a platform for helping others.

The Warrior Who Used Her Voice

Genesis became a nationally engaged patient leader and passionate advocate for health equity, rare-disease awareness, and authentic patient representation. She gave voice to patients and families navigating sickle cell disease (SS), rare diseases, chronic pain, transplant survivorship, mental health challenges, and inequities within the healthcare system—particularly young people and patients of color whose experiences were too often overlooked.

Her advocacy began early. In 2016, Genesis partnered with Be The Match, now NMDP, helping promote stem cell and bone marrow donation. She later founded the Rare Resilience Alliance (RRA), creating a platform to support and empower people living with rare diseases, sickle cell disease (SS), and post-transplant conditions.

Genesis also contributed her leadership to the Rare Disease Diversity Coalition (RDDC) and the EveryLife Foundation for Rare Diseases Young Adult Rare Representatives (YARR) network in Texas.

Her work earned national recognition, including the 2024 Patient RISE Award from the Rare Disease Diversity Coalition. Genesis was a sought-after public speaker and panelist whose voice reached national and community audiences through Rare Disease Day programming, health-equity panels, patient-led conversations, media campaigns, and testimony connected with the National Institutes of Health (NIH) and The Children’s Inn.

Whether speaking from a podium, writing a poem, sharing her story on camera, or sitting beside another patient, Genesis believed deeply that people should have the opportunity to speak for themselves and be heard.

The Legacy She Leaves

For all that Genesis accomplished, those who loved her knew that she was so much more than her advocacy—and infinitely more than any diagnosis.

She was creative and thoughtful. She loved music. She played the violin. She captured moments through photography. She wrote. She learned. She laughed. She loved deeply. And she possessed the rare ability to transform difficult experiences into purpose while helping others feel less alone.

Genesis’s life was far too short, but it was extraordinarily full. She leaves behind a legacy in the lives she touched, the patients she championed, the stories she told, and the movement she helped build through the Rare Resilience Alliance.

Her life reminds us that resilience is not simply enduring what comes our way. It is choosing what we will do with the life we have been given.

Genesis used hers to make a difference.

The warrior fought bravely. The woman lived purposefully and the legacy continues.

Celebration of Life

A memorial service celebrating Genesis’s life will be held at 2:00 p.m. on Saturday, August 22, 2026, at:

Wade Funeral Home & Crematory4140 W. Pioneer Pkwy. Arlington, Texas 76013

A repast will immediately follow the service at Wade Funeral Home.

A livestream will be available for family, friends, advocates, and members of the community who are unable to attend the memorial service in person. Additional livestream information will be provided through the funeral home.

Honoring Genesis’s Legacy

In honor of Genesis’s life and legacy, the family invites those wishing to make a memorial contribution to support two organizations whose work reflects the causes she championed throughout her life.

Rare Disease Diversity Coalition (RDDC)Genesis was an active voice within the rare-disease community and a recipient of RDDC’s 2024 Patient RISE Award. RDDC’s commitment to health equity and greater representation for historically underserved rare-disease communities closely reflects the work Genesis championed.

Donate to RDDC in Genesis’s Honor

Sickle Cell Disease Association of America (SCDAA)SCDAA’s national work to advance sickle cell disease awareness, advocacy, community support, and the pursuit of better outcomes reflects a cause that was deeply personal to Genesis and central to her life’s work.

Donate to SCDAA in Genesis’s Memory

These organizations reflect Genesis’s lifelong commitment to sickle cell disease (SS) advocacy, health equity, patient representation, and ensuring that the voices of those living with rare and chronic conditions are seen, heard, and valued.

Through these gifts—and by continuing the work she championed—we honor Genesis not only by remembering her life, but by carrying her legacy forward.