What is the purpose of SpreadtheCure.org®?
We are a nationwide 501(c)(3) organization registered under EIN 83-1140831. Our goal is to raise awareness about the cure for Hemophilia and other genetic diseases. By raising awareness about real cures for people with genetic diseases, we can reduce healthcare costs for everyone. For example, it is estimated that $1M will cure one child with Hemophilia Type A for life. The cost of current medications, and subsequent surgeries, to treat this same child for life would be in the millions. Real cures save real people from real suffering and it takes an enormous financial strain off of our overburdened healthcare system.
They Thought Hemophilia Was a "Lifelong Thing." They May Be Wrong. | NY Times/NYTimes.com
How are we different than other non-profits?
We are focused on raising awareness about real cures. We hope to bring healthcare and treatment costs down by raising awareness about ethical & safe revelations in CRISPR and modern innovations in curative medicine. We hope to prevent people from ever needing to go to other wonderful organizations like St. Jude’s Hospital.
The current treatment costs for many genetic diseases puts a tremendous financial, emotional, and physical strain on the people and families affected, not to mention the healthcare system as a whole. Our vision is to raise awareness about real cures and hopefully bring costs down. This is a complicated issue with various safety & ethical implications, so please forgive any errors or omissions we may make as we try to remove obstacles and ‘Spread the Word’ about curative medicine as an option. - Spread the Cure Founder
‘Spread the Cure’ in the News
Spread the Cure raises awareness and capital to cure those with hemophilia | Palm Coast Observer/PalmCoastObserver.com
What is Hemophilia?
Hemophilia is a deadly bleeding disorder that prevents the blood from clotting normally if not treated. The primary symptom is uncontrolled internal bleeding in different areas of the body. The amount of bleeding depends on the severity of the disease. Internal bleeding, which commonly occurs in the spaces around joints, results in debilitating pain and swelling. The cumulative effects of internal bleeding can lead to permanent damage of joints, muscles, organs, and even premature death.
– National Hemophilia Foundation & those directly affected by Hemophilia
How many people are affected by Hemophilia?
Hemophilia A occurs in 1 in 5,000 live male births (stillborn birth data unavailable at this time). Hemophilia A is about four times as common as Hemophilia B. About 20,000 people in the United States have Hemophilia A (though this number is difficult to accurately verify). The worldwide incidence of hemophilia is not well known, but is estimated at more than 400,000 people. Approximately 75 percent of people with hemophilia around the world still receive inadequate treatment or have no access to treatment.
– National Hemophilia Foundation
Is Hemophilia lifelong?
People born with hemophilia have it for life if it goes untreated.
– World Federation of Hemophilia
The disease is typically inherited in an X-linked recessive pattern.
– U.S. National Library of Medicine
What are the costs associated with Hemophilia?
As of this writing, it costs $270,000 every year to treat one person with current non-curative medications. The cost of treating related issues (such as joint replacements, surgeries or both) can cost millions over a lifetime. The cost of lost productivity, the financial strain on families, the ripple effect across the healthcare system, the psychological and emotional distress, and the inability to lead an active life, due to a single gene being out of place, are beyond computation.
This is one of many curable diseases. Please help us provide those suffering from it with a realistic path of access to curative medicine. Preliminary reports suggest that the cost for the injection will be expensive ... well beyond the means of most to pay cash, and/or those who are uninsured.
Is there a cure?
Revelations in CRISPR & modern innovations in curative medicine offers promise. Sangamo is currently pioneering clinical trials in the USA and they have our full support. Sandy Macrae MRCP PhD, provides his teams with steady leadership using candor and honesty. The cure for those with Hemophilia Type A is available at select HTCs around the country. It is estimated that 1 in 3 people born with hemophilia get it through a spontaneous gene mutation that may be treated in vitro.
SpreadtheCure.org is working diligently to raise awareness and provide a path to safe, affordable & timely access to a cure for those affected by this disease.
Gene Therapy Yields Dramatic Results in Hemophilia. | Forbes/Forbes.com