Will IS a Person who tries
to actualize
Will is 12 years old, is a hockey fanatic,
and is terminally ill
When Will was diagnosed at 2½ years old, his parents were told he would probably not live past the age of 10. For many years he has been unable to walk, to talk and to swallow. He is on a feeding tube.
His intellect is working, his muscles are not.
And Will lives his life to the fullest.
After Will was diagnosed, his parents endured years of frustration
trying to find anything that could help their son.
As a result of their persistent search, they came into contact with
WORLD RENOWNED RESEARCHERSand began working with them to discover a way to “fix” deficient genes that cause terminal illnesses.
Will’s SURF1 gene, vital in the absorption of nutrients, does not work.
Will’s cells are starving because of that one non-working gene.
It is the cause of Will’s terminal illness, Leigh Syndrome.
Will’s parents became a driving force in the-“future-is-now” genetic research, joining with other families several years ago to form a foundation now known as the Cure Mito Foundation. This 501(C)3 organization, dedicated to research to find a cure for SURF1 Leigh Syndrome, a mitochondrial disease, has widened its future scope, with the hopes of driving more research
for other mitochondrial diseases.
Leigh Syndrome is rare
and so are the thousands of other one gene diseases that are out there.
More children die of the collective thousands of rare diseases
than die of cancer.
Because the diseases are rare, little research has been done on many of them. At the time of diagnosis, parents are told,
“There is nothing we can do.
There is no treatment.
There is no cure.”
All of that is changing.
Groundbreaking research
is being done.
And that
RESEARCH CONTINUESat a relentless pace.
The knowledge gained in pursuing a cure for this one-gene disease will be vital in pursuing cures for other one-gene diseases.
That in turn will be vital knowledge to apply to the pursuit of cures for more common multiple gene diseases like cancer, Alzheimer’s, and Parkinson’s.
Because Will’s parents have been so tirelessly dedicated to this cause, and because of the enormous number of families impacted by rare diseases
–there are approximately 7,000 rare diseases–
medical professionals in the field of genetic research encouraged Will’s mother to join with the mother of a child with a different rare disease to form an organization dedicated to advocacy and education.
Its lofty, hope-filled mission is to shine a light on all aspects of all rare diseases.
That 501(c)3 foundation is
RARE VILLAGE