What is the purpose of SpreadtheCure.org™?
We are a nationwide 501(c)(3) organization registered under EIN 83-1140831. Our purpose is to cure people with hemophilia and give hope to people suffering from blood-related diseases caused by genetic disorders. A 'one-injection somatic cure' will hopefully bring emotional, financial & physical relief to those with this disease.
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 providing access to real cures, starting with severe cases of hemophilia. The estimated $30B it would cost to cure every person with hemophilia in the USA is daunting, but this is proving to be a disease that can be fixed through ethical & safe revelations in CRISPR and modern innovations in medicine.
Unfortunately, our current healthcare system & our stock markets simply are not well designed to serve those who need cures in a safe, affordable & timely manner. Those with hemophilia have suffered enough, and those born with this disease hopefully need not suffer at all. Our only means for attaining our goal is through those who chose to give … that’s you and/or companies that choose to help us. We are grateful to those who help us along our way. 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 the cure to the best of our ability.
+ Ryan C. Miano/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. Hemophilia A is about four times as common as Hemophilia B. About 20,000 people in the United States have Hemophilia A. 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.
– 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?
On average, it costs at least $270,000 every year to treat one person with current 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 a "normal" life due to a single gene being out of place are beyond computation.
This is one of many multi-billion-dollar diseases for various industries, and it is time to shed light on the excessive medical expenses associated with them. Please help us provide those suffering from it with a realistic path of access to the cure. Preliminary reports suggest the cost for the 'one-injection somatic cure' will be very expensive ... well beyond the means of most.
Is there a cure?
Yes, thanks to revelations in CRISPR & modern innovations in medicine. The ‘one-injection somatic cure’ exists and is currently in clinical trials in the USA. It provides relief to the individual, but it currently does not prevent the recessive gene (or spontaneous gene mutations) from being passed to future generations. It is estimated that 1 in 3 people born with hemophilia get it through a spontaneous gene mutation.
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