When we started Jaxon’s Cure…..
In the summer of 2007, Jaxon’s parents and an outstanding group of friends and relatives got together and formed a Non-profit organization that was lovingly named Jaxon’s Cure. In July of 2007 it was incorporated in the State of Washington. Additionally, documentation was filed with the IRS and shortly thereafter the organizations documents were approved. Jaxon’s Cure then received a determination letter stating that they were exempt from Federal income tax under section 501(c)3 of the Internal Revenue Code and that contributions to Jaxon’s Cure are deductible under section 170 of the Code. This laid the groundwork for the incredible missionthis group was about to undertake.
A pivotal point of that summer meeting was their mission statement. This simple yet powerful statement established the foundation for the organizations purpose…..to find a cure for Jaxon and other children worldwide with SSPE by directing funds raised towards research, cure development and awareness on all issues related to SSPE.
Why we started Jaxon’s Cure…..
Because SSPE is rare, there is no federal funding available for research. It is with the help of friends, family and philanthropic groups to fund this much needed research so Jaxon and other children like him worldwide may be cured.
Without a cure….this disease will attack the child’s central nervous system and quickly control his ability to do all the basic things that we often take for granted like the ability to walk, talk and eat.
Without a cure…..these kids may succumb to this fatal disease within 1 – 3 years of onset unless they are fortunate enough to receive an early diagnosis and start an aggressive treatment plan.
Diagnosis is extremely difficult and is sometimes misdiagnosed because of its rarity. And even with diagnosis, there are no guarantees. Although a combination therapy using Interferon and Isoprinosine may improve clinical conditions and survival time to some extent, there is currently no specific treatment available to cure patients with SSPE.
A new treatment strategy for SSPE is greatly needed.
Our primary purpose…..
Instituting SSPE research in the United States is one of the primary reasons Jaxon’s Cure was formed. To date there is no known research or clinical studies being done in the US. This organization wants to change that.
Jaxon’s Cure has the challenging task in locating a research institute that will dedicate time and energy in finding a new treatment strategy for SSPE. It is also taking on the enormous task to inform the general public on the complications of the measles virus and its mutated form called SSPE. (Please read our link “What is SSPE?” for more detailed information.)
To find a cure or effective treatment for SSPE, research has to be done on measles.
Key facts about measles and its complications:
Measles remains a leading cause of death among young children, despite the availability of an effective vaccine for the past 40 years.
In 2006, it was estimated that there were 242,000 measles deaths globally.
Children usually do not die directly of measles, but from its complications.
The most serious complications include blindness, encephalitis, severe diarrhea, ear infections and severe respiratory infections such as pneumonia. SSPE is the most fatal form of encephalitis caused by the measles virus.
Key facts from investigators that studied measles:
Investigators are interested in knowing how a virus causes immuno-suppression. Measles was the first virus known to suppress the immune system (years before HIV) and immunosuppressed patients recover after a few months. How do they recover while HIV patient do not?
Measles is used by some investigators as a vehicle to treat certain cancers due to high infectivity of lymphocytes.
Measles is used by some investigators as a vehicle for vaccination used to vaccinate against malaria and other infections.
Focused research on measles and its complications such as SSPE can lead to other discoveries that can lead to better treatment for other viral infections.
Where do we start….?
Knowing that SSPE has no boundaries, Jaxon’s Cure has formed an alliance with SSPE Associations in Turkey and Germany. There are an estimated 3,000 plus known cases of SSPE in these two countries due to an outbreak of measles and the numbers are growing. Both groups have shared their information regarding alternative treatments and therapies but so far no one has found a cure.
Using the World Wide Web Jaxon’s Cure is continually monitoring the research of countries with reported cases of SSPE like Japan and the Philippines. We will continue to monitor their progress as somewhere, if not the US, a more effective treatment or cure will be found and we want to make sure we know about it.
After only a few months since this website was established, hundreds of friends and family have been spreading the word on SSPE. This grassroots approach will prove invaluable in the months to come. Jaxon’s Cure has also been in preliminary discussions with a world renowned research institute that is willing to re-establish research on the measles and SSPE virus upon verification of funding. We look forward to adding a “Research” page to our website.
How can you help….?
You can help find a better treatment and eventually a cure by donating to Jaxon’s Cure. Donations are tax deductible and funds donated will be directed towards research, cure development and awareness on all issues related to SSPE. The board consists entirely of volunteers and no one involved with the group is being compensated.
With much appreciation!!!!