NGF Ambassador Ilaina Davidson has two young children with Gaucher disease. Rebecca (10) has been on ERT for 8 years and Abby (8) has been receiving treatment for 4 1/2 years. She, and daughters Rebecca and Abby, share their experiences and perspectives with us in this month’s Ambassador Spotlight. What were the events leading… Read More »
In early February, more than 1,600 participants from around the world gathered at the annual research conference WORLDSymposium™. WORLD stands for “We’re Organizing Research on Lysosomal Diseases.” Why WORLD? If two heads are better than one, imagine what 1,600+ heads can do? The WORLDSymposium focuses on lysosomal storage diseases, including Gaucher disease. The goal of… Read More »
Contributed by Stu Berman Having been diagnosed in the early 1970’s, I have been a Gaucher patient for most of my life. Over these years, I have had the pleasure of meeting many GD patients, both at NGF meetings as well as other GD patient meetings at various hospitals. These interactions have given me the… Read More »
The National Gaucher Foundation is saddened to hear of the passing of Dr. Henry Mankin. For forty years, Dr. Mankin was the chief of orthopedics at the Massachusetts General Hospital and at Harvard Medical School. Born in Pittsburgh, he was the son of immigrants from Lithuania. Dr. Mankin was a beloved member of the medical… Read More »
At a recent symposium on Gaucher disease, nationally and internationally renowned Gaucher disease experts answered a variety of questions about the condition. Topics touched on everything from advances in gene therapy to the role of diet in Gaucher disease treatment to whether people with Gaucher disease have certain biological advantages. Read the Gaucher disease Q&A… Read More »
The history of a disease can be tricky to pinpoint. An individual disease makes people ill long before the disease itself has an identity or name. Archaeologists found evidence of cancer in ancient Egyptians, though cancer didn’t get its name until 1,000 years after the ancient Egyptians. When Was Gaucher Disease Discovered? So it’s probably… Read More »
On October 8, the National Gaucher Foundation hosted a webinar featuring Laurie Bailey, Clinical Research Manager at Cincinnati Children’s Hospital. You can watch the recording below. Toolkit Presentation Slides Transitions Growing and Managing Your Own Healthcare: What Every Teen Living with an LSD Needs to Know to Manage Their Healthcare – Dawn Laney, MS American… Read More »
Precision medicine could help enhance and direct treatment for Gaucher disease. But it might be challenging to obtain detailed genetic information from people living with Gaucher disease.
A Gaucher specialist is an expert in diagnosing and treating Gaucher disease. Having this specialist on your care team is essential to receiving the best treatment possible. NGF can help you find a Gaucher specialist.
Research into the link between Gaucher disease and Parkinson’s disease may provide answers to treatment for both conditions. Gaucher Disease and Parkinson’s Diseases: An Unexpected Connection As Gaucher disease research progresses, scientists are discovering stronger links between the condition and other neurological illnesses, like Parkinson’s disease. But there’s still much to learn about how, and… Read More »