NGF Community Blog

Ambassador Spotlight: Kelly Burns

What were the events leading up to your diagnosis? I had been getting lots of nose bleeds as well as experiencing a lot of bruising and extreme fatigue. I was a teenager. I chose to hold off on starting treatment since I was stubborn and didn’t want bi-weekly infusions to disrupt my schedule. What has… Read More »

Topics: About Gaucher Disease, Ambassador Spotlight

Bone Disease, An Often-Overlooked Complication of Gaucher Disease

The more we learn about Gaucher disease, the more we understand how it affects complex cellular interactions among various body systems. As familiarity with Gaucher disease grows, more people recognize the hallmark symptoms of this disorder, such as spleen and liver enlargement and problems with certain blood components. But difficult-to-treat bone disorders are also common… Read More »

Topics: Living With Gaucher Disease

Ambassador Spotlight: Ilaina Davidson

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 »

Topics: About Gaucher Disease

2019 WORLDSymposium

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 »

Topics: About Gaucher Disease

Ambassador Spotlight: Michele Pryor

This month we are introducing you to NGF Ambassador, Michele Pryor. What were the events leading up to your diagnosis? As a young child, I had a distended abdomen, low blood counts, high bilirubin and bruised easily. For several years, I saw a variety of doctors and was misdiagnosed before being referred to a rare… Read More »

Topics: Ambassador Spotlight

Ambassador Spotlight: Carrie Choate

Last year, we introduced you to our first group of elite NGF Ambassadors. This year, we will be sharing a closer look at each of our ambassadors and their journey with Gaucher disease. First up: Carrie Choate. What were the events leading up to your diagnosis? The events leading up to my diagnosis were a… Read More »

Topics: Ambassador Spotlight

A Patient’s Perspective: The Importance of Gaucher Specialists

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 »

Topics: About Gaucher Disease

In Memoriam: Dr. Henry Mankin

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 »

Topics: About Gaucher Disease

National Gaucher Foundation: 2018 Year in Review

The National Gaucher Foundation looks back on the accomplishments of 2018, made possible by the support and participation of the Gaucher disease community.

Topics: About the National Gaucher Foundation

2018 NGF Patient Symposium: Q&A

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 »

Topics: About Gaucher Disease, About the National Gaucher Foundation

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