This week's Spotlight shines on leading disability advocate Donna Cruz Jones, an adult Duke Children's patient and member of the Duke Children's National Advisory Board, who made history recently when she testified on Capitol Hill, eloquently asking for Congressional funding for the National Spina Bifida Patient Registry on behalf of the Spina Bifida Association.
We are proud to share video of her impressive Capitol Hill testimony for you below along with Donna’s life journey.
Donna Jones testified in front of The House Subcommittee on Labor, Health & Human Services and Education on Tuesday, April 9. Jones advocated for $8 million in funding for the Center on Birth Defects and Developmental Disabilities (NCBDDD) at the Centers for Disease Control and Prevention (CDC). The program has been funded at $6 million, a number that has been constant for the past five years.
Jones was born on the United States Territory of Guam on April 20, 1976. She has had more than 30 surgeries and multiple hospitalizations, however, that has never stopped her from living a full and productive life. “This April I will be 43 years old,” she said. “I love birthdays because with every passing year I defy all the negative predictions about what my life would be. I am happy to say I’m part of the first generation to survive to adulthood. I want the opportunity to grow old enough to look in the mirror and see wrinkles on my face and more gray hairs on my head than I can count.”
However, aging still doesn’t come without fear. Kidney failure is Jones’ biggest concern. She has frequent bladder infections but stays on top of her care to prevent kidney failure. Also, like 80% of people with Spina Bifida, Jones has hydrocephalus. She has a shunt in her brain that is essential her managing this condition.
Despite the bleak picture that Spina Bifida, and its comorbid conditions, can sometimes paint, Jones notes, “I don’t ever want anyone to pity me, I have a wonderful life. I’m very blessed to have had only three surgeries in the last six years,” she said.
Though, as much as she loves her life, Jones wants to see more research and a cure for future generations. An increase in funding would make those things a possibility. The increase in funding that SBA is requesting will grow research taking place out of the National Spina Bifida Patient Registry (NSBPR) at the CDC. The NSBPR includes data from 10,000 patients from 24 Spina Bifida clinics in the US.
Previously, a board member of the Spina Bifida Association, and a former Capitol Hill staffer, Jones spends a lot of her time serving as an advocate for other people with disabilities. She currently lives in Los Angeles where she is a competitive athlete. Her goal is to break the women’s US bench press record on June 28 of this year. Currently, the record is 242 lbs. Jones intends to break it by lifting 260 pounds. A documentary film is currently in the works that follows Jones’ journey to break this record.
About Spina Bifida Association
The mission of the Spina Bifida Association is to promote the prevention of Spina Bifida and enhance the lives of all affected. We work to make a practical, positive difference every day, helping to improve care so individuals can enjoy life to the fullest. The Spina Bifida Association (SBA) provides information, resources, assistance, advocacy, and connections to help all those affected by Spina Bifida.
This news release originally appeared on the Spina Bifida Association website.
Watch Donna Cruz Jones testify on Capitol Hill for spina bifida funding.