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When Will was diagnosed at 2 ½ 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.
He has met NHL hockey players… SEE
has been featured in newspaper articles… READ
and has been covered in a TV newscast. WATCH
After Will was diagnosed, his parents endured years of frustration WORLD RENOWNED RESEARCHERS
trying to find anything that could help their son.
As a result of their persistent search, they came into contact with
and 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.”
is being done.
And that RESEARCH CONTINUES
at 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
A growing number of families are gaining hope
by taking part in this website and making use of the services it offers.
Forming these two Foundations has taken
intensive hard work and time commitment—as unpaid “volunteers.”
100% of the donated funds to these two foundations is directed to the dedicated purpose.
Because there are so many rare diseases, there is another little known fact.
1 in every 10 people is affected in some way by a rare disease.
Because of this, it is not only possible, it is probable
that many of the people reading this know someone
who has a rare disease or has a child with a rare disease.
The sites linked below give emotional and informational support to rare families.
Please pass this information along to anyone you know who needs that support.
Each of these sites has a wealth of information about
research, resources, and other rare families.
All 3 sites were put together by
mothers with children who are living with rare diseases—
mothers who could not find this information
when their own children were diagnosed
and so they made it their mission to make that information available to other families like theirs.
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