Dear friends of Jenna & Patrick’s Foundation of Hope,
This website is dedicated to Jenna and Patrick Partington and
every child living with the disease Cystinosis.
We
are happy to have this space to spread awareness about
Cystinosis, let you know what we are doing in
our quest for
better treatments, and to share stories about Jenna and Patrick
and other children with cystinosis.
Every few months we
hear of a child being diagnosed with this devastating disease,
and we hope the information,
photos and hopeful news here bring
enlightenment and peace of mind to families who have typed
“cystinosis” into
their search engine for the first time.
As you browse this site you will notice a number of links to
the Cystinosis Research Foundation website.
We are proud
of our partnership with this well established organization.
Their dedication to aggressive research
of Cystinosis is driven
by the wish of a 17 year old girl named Natalie. Her dream
of “having my disease go away
forever” has become our dream.
Our mission is to create awareness of this rare disease and
continue to raise funds
that will be directed to the doctors and
researchers who have dedicated their careers to treating
Cystinosis.
News Flash:
"Friends.... It is with great excitement that I’m forwarding this announcement about the formation of a Gene Therapy Consortium specifically focused on finding a cure for Cystinosis. A group of leading researchers in stem cell and gene therapies, molecular biology and clinical pathophysiology have formed the CRF Cystinosis Gene Therapy Consortium to find successful therapies for cystinosis, a rare and fatal metabolic disorder that afflicts about 2,000 persons, mostly children, worldwide...." Read More
What is Jenna & Patrick’s Foundation of Hope?
We are a
voluntary, nonprofit organization made up of parents, medical
professionals, friends, relatives and
others who are interested
in fighting Cystinosis. Our vision is a world where
Cystinosis is no longer a threat to
a full and productive life
for children and their families. Families affected by Cystinosis
will not be devastated
by the diagnosis or its impact on their
lives. Individuals with Cystinosis will have the same chance at
life as their
siblings and peers to run and play, hope and
achieve, and live out their dreams.
