PKD Life - Fall 2021 - 27

LEFT TO RIGHT: MHATZAPA/GETTY IMAGES, ORBON ALIJA/GETTY IMAGES.
PKD ADVOCACY IN 2021:
Uniting for Change
in a Virtual World
W hile COVID-19 tested our community more
than we could have imagined, we're proud
to look back at the good we've accomplished
together over the past year. PKD advocates have
rallied together to advocate for more research,
more funding, and more opportunities to fi nd
a cure for this disease. By adapting to a virtual
world, PKD champions have had their voices
heard at the federal, state, and local levels.
Since the onset of the pandemic, we've launched the PKD Advocacy Champions
Network (ACN), a community dedicated to improving the lives of people
with PKD through advocacy. The ACN's inaugural class-36 champions representing
22 states-met with over 30 U.S. Senate offi ces to advocate for the PKD
Foundation's legislative priorities, including the Living Donor Protection Act
and expanded research funding.
With the help of these ACN champions and the broader community, we
ACN membe rs
met wit h
Senato r Tim
Kai 's off i .
secured more than $12 million for PKD research through the Congressionally
Directed Medical Research Programs (CDMRP). Since 2014, PKD researchers
have received over $47 million from the program and we will advocate for
additional funding moving forward.
Finally, the PKD Foundation has been fortunate to participate in several
national coalitions dedicated to improving the lives of people with chronic
kidney disease and their living donors. With the Honor the Gift coalition, we
celebrated the passage of the Comprehensive Immunosuppressive Drug Coverage
for Kidney Transplant Patients Act (the Immuno Bill) in December 2020.
We also joined eff orts with a variety of community members to secure the passage
of living donor protections in six states this year.
As we move to a new normal, the Foundation is working to build on the successes
of last year and provide PKD advocates with additional opportunities to
share their stories and inspire change. We are more committed than ever to
fi ghting for our communities' priorities, including:
* Maximizing federal investments in PKD research under the Congressionally
Directed Medical Research Programs (CDMRP)
* Passing legislation that directly impacts and encourages kidney donations
among the PKD community, including the Living Donor Protection Act (LDPA)
* Addressing the consequences of racial disparities in kidney disease diagnosis,
treatment, and access to transplantation, particularly within the
PKD community
Now is the perfect time to get
involved-whether you're a seasoned
advocate or just beginning your journey
with us, check out pkdcure.org/
advocacy for plenty of opportunities
to consider.
* Sign up for Advocacy Alerts to
stay informed on the latest news.
These alerts provide all the information
you need to contact your legislators
and educate them about these
important issues.
* Take some time to learn more
about our initiatives.
Our legislative and regulatory priorities
are guided by our vision to end
PKD. Learning more about these
critical issues will help you to be a
better advocate.
* Check out our advocacy tools
and resources.
Share your story and tell your friends,
family, and elected offi cials how they
can help #endPKD.
*
PKDCURE.ORG
27
http://www.pkdcure.org/advocacy http://www.pkdcure.org/advocacy http://www.PKDCURE.ORG
PKD Life - Fall 2021

Table of Contents for the Digital Edition of PKD Life - Fall 2021
