Tyrosinemia Society

04/10/2026

Please help me express our sorrow and prayers to our Co-Founder and President, Dr. Beth Barnby.

Her son DJ (26) who had Tyrosinemia Type 1 and received a liver transplant passed away suddenly and tragically due to an accident.

Derrick Eugene “DJ” Barnby died on April 2nd in Kirksville, Missouri. EMS and Healthcare providers made a courageous effort to save his life at the local emergency department, but due to tornado weather the helicopter was unable to fly him to the tertiary trauma center. They attempted to stabilize and transfer him by ground ambulance, but shortly after he arrived at the University of Missouri Hospital in Columbia Missouri, he passed away. He never regained consciousness, and we know he is now with his Lord and Savior.

He is survived by his wife Aireal Cole, his 3 year old daughter Yvonne Shay Barnby, his father Stuart Barnby, his mother Beth Barnby, his brother Gilchrist Brooks Barnby, and his sister Brie.

We as a Tyrosinemia community and friend of Beth will miss him greatly as they carry on without him.

Per the family request, donations can may be made in his memory to the Tyrosinemia Society through this link: https://www.paypal.com/ncp/payment/FJWNSKGM9XDW6

12/23/2022

10/06/2021

The House Ways and Means Committee recently passed their portion of the Build Back Better Act, which included language to amend the Orphan Drug Tax Credit (ODTC) in ways that would severely undermine efforts to ensure more patients have access to a safe and effective drug for their rare condition. P...

08/11/2021

Click the link to join the Tyrosinemia PLM Community! We are stronger together!

PatientsLikeMe welcomes members of Tyrosinemia Society to join our personalized health network of 800000+ people living with 3200 health conditions.

07/28/2021

Click the link below to take you to the Tyrosinemia Society portal!

PatientsLikeMe welcomes members of Tyrosinemia Society to join our personalized health network of 800000+ people living with 3200 health conditions.

06/04/2021

Nursing faculty and staff members at The University of Alabama in Huntsville (UAH), a part of The University of Alabama System, are giving back to both their community and the world by supporting the Tyrosinemia Society and its new partnership with an organization called PatientsLikeMe.

02/27/2021

Tyrosinemia Society, Inc. Partners with PatientsLikeMe to the Tyrosinemia Community - IssueWire

05/23/2020

Tyrosinemia Connections: A Live Community Event has its next session on Weds 27th May: "Tyrosinemia Type 1: Winning Through Awareness, Adaptation and Empowerment". The meeting will be led by the Head of Patient Liaison Services Renata Tate and invited speaker Lynn Paolella. Join us at 12.00pm and again at 7.00pm EST. Register today: [email protected]

05/19/2020

Please click the link for resources for patients and caregivers.

The health and safety of those with rare diseases and their caregivers are always our top priorities at the National Organization for Rare Disorders® (NORD). We stand in solidarity with the rare community and would like to extend support for those impacted by COVID-19, directly and indirectly. By s...