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This young man Sam and his family have set the gold standard for what can be done when a family faces a rare disease. When Josh found out he had Chordoma, he contacted Dr. Gordon and Dr. Burns to mobilize the Chordoma battle plan, and thanks to a thoughtful, planned vision of what is needed to propel the research forward, both organizations have achieved a great deal in a short amount of time.
Both boys had parents who are MD's and fighters. Both families said they would devote their lives to finding a cure. Both families have used medicine, the Internet and social media to advance science at a tremendous rate. And both families are in a race against time to find cures for their diseases.
By donating to donategames we will be able to help charities like Sam’s and Josh’s, and share the lessons learned and tools available to provide hope to an isolated parent, patient or loved one.
Our Scientific Committee can see where your donations can have the maximum impact to save a life and ease suffering.
Sam's Story:
In the summer of 1998, Dr. Leslie Gordon and Dr. Scott Berns found out that their son Sam, who was then 22 months old, had Hutchinson-Gilford Progeria Syndrome ("Progeria").
Progeria is a rare and fatal, “rapid aging” disease that affects 1 in every 4-8 million children throughout the world. All children with Progeria die of the same heart disease that affects millions of normal aging adults (atherosclerosis), but instead of suffering at 60 or 70 years of age, these children may suffer strokes and heart attacks at ages 5 or 6. Remarkably, the intellect of children with Progeria is unaffected, and despite startling physical changes in their young bodies, these extraordinary children are intelligent, courageous, and full of life.
It quickly became apparent to Sam's parents that there was an enormous lack of medical information and resources dedicated to Progeria. There was no place for these children to go for medical help, no place for parents or doctors to turn for information, and no source of funding for researchers who wanted to do Progeria research. This dire need for information and research-funding opportunities inspired Sam's family, together with their friends and colleagues, to launch The Progeria Research Foundation, Inc. ("PRF") in 1999, the only non-profit organization in the world dedicated to Progeria research.
In just ten years, PRF has progressed at a pace virtually unheard of in the scientific community, from gene discovery in 2003 to a first-ever clinical drug trial now going on, using a drug that shows great promise to effectively treat these children.
Researchers have confirmed the link between normal aging, heart disease and Progeria, so finding the cure will help not only these special children, but perhaps also millions who suffer from heart attacks, strokes and other aging-related conditions. Imagine: Finding a cure for Progeria, one of the rarest diseases, could help millions with the most common illnesses – Amazing!
Both boys had parents who are MD's and fighters. Both families said they would devote their lives to finding a cure. Both families have used medicine, the Internet and social media to advance science at a tremendous rate. And both families are in a race against time to find cures for their diseases.
By donating to donategames we will be able to help charities like Sam’s and Josh’s, and share the lessons learned and tools available to provide hope to an isolated parent, patient or loved one.
Our Scientific Committee can see where your donations can have the maximum impact to save a life and ease suffering.
Sam's Story:
In the summer of 1998, Dr. Leslie Gordon and Dr. Scott Berns found out that their son Sam, who was then 22 months old, had Hutchinson-Gilford Progeria Syndrome ("Progeria").
Progeria is a rare and fatal, “rapid aging” disease that affects 1 in every 4-8 million children throughout the world. All children with Progeria die of the same heart disease that affects millions of normal aging adults (atherosclerosis), but instead of suffering at 60 or 70 years of age, these children may suffer strokes and heart attacks at ages 5 or 6. Remarkably, the intellect of children with Progeria is unaffected, and despite startling physical changes in their young bodies, these extraordinary children are intelligent, courageous, and full of life.
It quickly became apparent to Sam's parents that there was an enormous lack of medical information and resources dedicated to Progeria. There was no place for these children to go for medical help, no place for parents or doctors to turn for information, and no source of funding for researchers who wanted to do Progeria research. This dire need for information and research-funding opportunities inspired Sam's family, together with their friends and colleagues, to launch The Progeria Research Foundation, Inc. ("PRF") in 1999, the only non-profit organization in the world dedicated to Progeria research.
In just ten years, PRF has progressed at a pace virtually unheard of in the scientific community, from gene discovery in 2003 to a first-ever clinical drug trial now going on, using a drug that shows great promise to effectively treat these children.
Researchers have confirmed the link between normal aging, heart disease and Progeria, so finding the cure will help not only these special children, but perhaps also millions who suffer from heart attacks, strokes and other aging-related conditions. Imagine: Finding a cure for Progeria, one of the rarest diseases, could help millions with the most common illnesses – Amazing!
