Last year, we told you about Zoey Penny, a Verona toddler who has progeria, a rare disease that is causing her to age much more rapidly than she should.
Now, a study about a possible treatment has been published in a scientific journal called Science Translational Medicine. Dr. Francis Collins, director of the National Institutes of Health, and his seven co-authors say that an immune suppressing drug, called rapamycin, might be a treatment for progeria. Rapamycin is a drug commonly used in organ transplant operations to prevent patients from rejecting the transplant. Since it is already approved for human use, the scientists can immediately begin to recruit participants for clinical trials.
The Progeria Research Foundation, which has been the beneficiary of many fund raising events in Zoey Penny’s name in and around Verona, funded the study. The foundation stresses that rapamycin is not a cure for progeria. The drug cuts the protein that causes progeria in half, which means it may be able to slow the damaging effects of the disease. You can read more about the study on PRF’s Web site.
“As you can imagine, all the Progeria families are excited about the news and the possible benefits,” says John Marozzi, Zoey Penny’s grandfather. “The good news is that Zoey will be part of the clinical trial as well as about 50 more of the kids from all over the world. Presently there are 80 known cases world wide.”
Team Zoey, the fund raising group started by Zoey Penny’s grandparents, is planning another event at the end of this month. On July 23 at 6:30 p.m., there will be a concert of music from the 60s, 70s and 80s by The Hit Men at the Preakness Hills Country Club in Wayne. Tickets are $135 and you can get yours here.
