Avery's Hope Fund

Avery’s Hope

Avery’s Hope Fund was established to raise public awareness about Glycogen Storage Disease (GSD) and to support fundraising efforts to find a cure for this disease.

Glycogen Storage Disease Research Fund

Specifically, Avery’s Hope supports the research efforts of Dr. David Weinstein at University of Florida’s Glycogen Storage Disease Program.

100% of all monies raised by Avery’s Hope will be used to support research projects related to the treatment and cure of Glycogen Storage Disease.

Latest News

Toddler Brothers With Rare Condition Need To Be Fed Every Two Hours To Prevent Seizures

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Added Sugars Will Now Be on Nutrition Labels, No More “Calories From Fat”

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Hope to Go Home Tomorrow

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Big Green Egg Fundraiser

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Glycogen Storage Disease

Glycogen Storage Disease

Glycogen Storage Diseases (GSDs) are a group of rare inherited genetic disorders caused by an inborn error of the metabolism. Those affected with GSD have a defective gene that results in an enzyme deficiency that alters the ability of the body to make energy during periods of fasting.

Metabolism is the combination of all the chemical reactions taking place in the body to convert or use energy. It is the process by which our body breaks down the food that we eat and converts it to the energy that is used by the body. When just one enzyme that make these chemical reactions possible is missing or damaged, the entire metabolism process is disrupted.

Normally, when a person eats, excess sugars that are not immediately used by the body, are stored in the liver and muscles as glycogen. During periods of fasting, the liver releases the stored sugar to provide energy for the body. In the case of GSD, because of the missing enzymes, the body cannot make enough glucose or is not be able to use glucose as a form of energy, the stored glycogen begins to build up in the organs, and the body cannot maintain normal blood sugar levels without constant feedings.

 

At this time there is no cure for GSD.

Dangerous by-products such as lactate, uric acids,and triglycerides in combination with low blood sugars lead to numerous complications including impaired breathing, seizures, coma and death if a very strict dietary regimen is not followed. The management of GSD is lifelong and not only affect the child, but also affects the parents and family of the child born with this disease. These children must be fed every one to four hours to maintain appropriate blood glucose levels. Because this regimen of constantly feeding day and night and because missing a meal or feeding can have catastrophic effects, some children have gastric tubes placed and some of these have issues ingesting by mouth.

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Director of Glycogen Storage Disease Program, UF

DR. WEINSTEIN

At present, all of Dr. Weinstein’s research expenses are being funded by philanthropy from individuals and groups such as Avery’s Hope Fund.

Following his graduation from Trinity College (CT) and Harvard Medical School, Dr. David Weinstein completed his Residency, Chief Residency, and Fellowship in Pediatric Endocrinology at Children’s Hospital Boston. He subsequently obtained a Masters in Clinical Investigation from Harvard and MIT, and became the Director of the Glycogen Storage Disease Program at Children’s Hospital Boston. In 2005, Dr. Weinstein moved the program to the University of Florida, to pursue a dream of curing this disease through gene therapy.

Dr. Weinstein follows the largest cohort of GSD patients in the world and he has published over 50 articles and 21 textbook chapters on this topic. He is a former Jan Albrecht Award winner from the American Association for the Study of Liver Diseases.

As part of Alyssa’s Angel Fund, which supports clinical care for patients with Glycogen Storage Disease when financial resources are impeding access to GSD specialists, Dr. Weinstein provides his medical services for free.

Director of Glycogen Storage Disease Program, UF

DR. WEINSTEIN

Following his graduation from Trinity College (CT) and Harvard Medical School, Dr. David Weinstein completed his Residency, Chief Residency, and Fellowship in Pediatric Endocrinology at Children’s Hospital Boston. He subsequently obtained a Masters in Clinical Investigation from Harvard and MIT, and became the Director of the Glycogen Storage Disease Program at Children’s Hospital Boston. In 2005, Dr. Weinstein moved the program to the University of Florida, to pursue a dream of curing this disease through gene therapy.

Dr. Weinstein follows the largest cohort of GSD patients in the world and he has published over 50 articles and 21 textbook chapters on this topic. He is a former Jan Albrecht Award winner from the American Association for the Study of Liver Diseases.

As part of Alyssa’s Angel Fund, which supports clinical care for patients with Glycogen Storage Disease when financial resources are impeding access to GSD specialists, Dr. Weinstein provides his medical services for free.

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