The Cystinosis Research Network is an all volunteer,
non-profit organization dedicated to:
- Supporting and encouraging research to develop
improved treatments and a cure for Cystinosis.
CRN
is currently funding 8 major research grants. Megan
Morrill has participated in "Early Intervention
Trial for Visual Processing Deficit in Cystinosis" and "Development
of Cystaemine Eye Drops" at the National Institute
of Health in Bethesda, Maryland. Soon she will participate
in the "Tissue Repository for Cystinosis" at
the University of Michigan.
- Helping families cope with cystinosis through information,
programs and support.
 CRN offers an online support
group, web sight, and biannual newsletter to keep
the community updated on the latest research and
news. These are vital life lines for those affected
with the disorder which, in many ways, as important
as the research CRN has committed to. CRN reaches
out to newly diagnosed families by directly contacting
them and guiding them during the early intervention
process.
- Educating the public and medical communities
about Cystinosis to ensure early diagnosis and
appropriate treatment.
CRN exhibits at professional conferences
in order to educate doctors and other professionals
about the diagnosis and treatment of Cystinosis.
They award educational schlorships to individuals
with Cystinosis as well as siblings of those affected
each year. CRN also raises funds to support the
family and medical conference held every other
year. These conferences provide families with personal
contact to all the researchers and interaction
with other individuals who suffer from Cystinosis.
(For more information on these research
studies please visit the CRN web sight at www.cystinosis.org)
CKID - The Chronic Kidney Disease
in Children Study
Megan is also involved in The Chronic Kidney Disease
in Children Study (CKiD). This is a national research
study of 540 children, ages 1 - 16, who have impaired
kidney function from across the United States. This
study is funded by the National Institutes of Health.
Important data are gathered once or twice a year
for 8 years at DeVos Children's Hospital. The CKiD
study will:
- Provide an accurate measure of Megan's
kidney function (glomerular filteration rate, GFR),
- Track Megan's behavior and abilities to learn
and think.
- Monitor growth.
- Evaluate heart and blood vessels
and discuss risk factors for future heart disease.
- Review concerns with parents about any social,
physical, and emotional well-being.
All research studies involve extra shots, extra
IV's, extra tests, and extra time spent at the hospital.
All children and adults who go the extra mile to
involve themselves in any research study are truly
special. Thanks to all of you out there who have
walked in these shoes.
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