SACRAMENTO, Calif. (KTVU) - Inspired by a 5-year-old Alameda girl with a rare gene disorder, California Assemblyman Marc Berman (D-Palo Alto) introduced a resolution on Monday to designate May as Bone Marrow Donation Awareness month.
Berman noted there is a significant need for more donors to increase the National Marrow Donor Program registry's ethnic diversity.
His resolution, ACR 70, which will need to be approved by the Senate in a vote likely later this month, was inspired by 5-year-old Norah Gratz-Lazarus, who diagnosed last year at Kaiser Permanente in Oakland with a rare genetic disease called Fanconi anemia, which affects her ability to produce new blood cells and interferes with her body’s ability to properly repair its DNA.
If untreated, this disease increases her risk of leukemia or bone marrow failure to 90 percent.
The Bone Marrow Registry already has 30 million donors worldwide, but minority populations such as Ashkenazi Jews like Norah, and other mixed-race communities, don’t have as robust a selection.
According to the Be the Match's 2017 annual report, the likelihood of finding a match is 23 percent if a patient is black and 77 percent if a patient is white.
Her parents, Zach Gratz-Lazarus, a social worker for the Alameda County Public Defender’s Office, and Rachel Gratz-Lazarus, a tobacco control program specialist for the Alameda County Public Health Department, are grateful that Norah doesn't need a donation at this point.
But in the meantime, they've become vocal bone marrow donation activists and have been trying to get the word out to have people volunteer to donate to the Be the Match nonprofit operated by the National Marrow Donor Program for the entire United States.
Since they began their quest in December 2018, Zach Gratz-Lazarus said more than 5,000 people have registered to donate their bone marrow.
Norah is set to graduate from pre-school at the end of the month and go to kindergarten in the fall.
Her father said he's "praying for many more graduations to come."
IF YOU'RE INTERESTED: Anyone who is interested can learn more about Norah and her journey at: www.norahneedsyou.com or on her Facebook page. For more information, contact the family directly at firstname.lastname@example.org.