PKD Life - Summer 2022 - 27

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Volunteer
With Us
V olunteers are the heart of the PKD commukidney
disease alone. The first local volunteer
community was formed in 1987, and since then,
the PKD Foundation has been committed to
growing our volunteer program to meet the
evolving needs of all who are affected by PKD.
Our local volunteers participate in fundraisers
to support research, host community events,
and build a true sense of belonging among PKD
patients, family members, and friends throughout
their journey with PKD. In addition, national
groups of volunteers support the Foundation's
mission in areas of advocacy, patient support,
education, and research. On average, PKD
Foundation volunteers contribute over 27,000
volunteer hours valued at more than $700,000
each year.
We have a variety of volunteer opportunities
available. Learn more about the different roles
and get involved at pkdcure.org/volunteer.
*
Patient-Powered
Research
T he contributions of
ADPKD Registry participants
are making a real
difference in research into
ADPKD. We've learned more
about its symptoms, its
progression, its treatment,
and its impact on quality
of life. Be sure to check out
the Registry Annual Report,
released in March, for important
insights, and watch for
enhancements and new features
coming this fall.
WALK FOR PKD
T he nation's largest gathering of the PKD community
is our signature fundraising and public
awareness event, the Walk for PKD. Since 2000, the
Walk for PKD has raised over $34 million for PKD
research. We're excited to return to in-person events
this fall while maintaining the robust virtual Walk
program we've developed over the past two years.
With nearly 50 local Walks and a virtual Walk,
anyone can join us! Walk with us this fall and fundraise
from wherever you feel safest.
*
CHECK OUT WALKFORPKD.ORG FOR
EVENT LOCATIONS, RESOURCES,
FUNDRAISING TIPS, AND FAQS.
WHY SHOULD YOU
SIGN UP?
Patients' voices are our most
powerful tool in the fight
to #endPKD. Over the past
year, we've learned about
difficulties patients have
had accessing medical care
for their PKD, COVID-19 outcomes,
and experiences with
brain aneurysms. Collecting
this data on a nationwide
scale-from nearly 2,500
ADPKD patients-helps us
connect with researchers
on new studies, advocate
for resources at the federal
nity and ensure that no one faces polycystic
level, and develop new
education for both patients
and clinicians.
Beyond enabling the PKD
Foundation to collect data
about the patient experience,
the ADPKD Registry
helps match people to clinical
studies. Once Registry
participants complete their
modules, we let them know if
they might be a good fit for a
study. Enrollment in studies
is based on age, disease stage,
kidney function, and other
factors. The faster ADPKD
studies enroll patients, the
sooner the Food and Drug
Administration can evaluate
the data for new potential
therapies. This data also
helps drug developers know
the size of the ADPKD population
available for studies
and their location throughout
the U.S. to identify new
trial sites.
If you're already enrolled,
thank you for contributing to
PKD research! If you haven't
yet signed up, check it out at
pkdcure.org/registry.
*
PKDCURE.ORG
27
http://www.pkdcure.org/volunteer http://www.pkdcure.org/registry http://www.WALKFORPKD.ORG http://www.PKDCURE.ORG
PKD Life - Summer 2022

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