Seeking Patient Stories

As part of a project to create free patient support educational material for CKD and dialysis patients, the organization Muse Story Telling is seeking patient stories.  You can connect with them at the August 20, 2017 NKF/PKG Wellness Fair in Portland, you can email them anytime at research@musestorytelling.org , or you can start with their short get-to-know-you survey at https://musestorytelling.typeform.com/to/OgVaYu .

8/20 NW NKF Wellness Fair

NKF and the Portland Kidney Group will present their Annual Community Picnic & Kidney Wellness Fair in Portland on August 20, 2017.  Bring your family, friends, and appetite, and don’t forget to RSVP.  Find full details at https://s3-us-west-2.amazonaws.com/nwrn.org/files/N/PKG.Picnic.0817.pdf .

8/17 Communication Courses

  • Dialysis Patient Citizens’ free monthly educational webinar, to be held August 17, 2017, will be on Communicating Effectively with your Health Care Team.  The webinar will be presented by members of the Forum of ESRD Networks’ Kidney Patients Advisory Council.  Register at http://www.dpcedcenter.org/education-seminars .
  • Kansas City’s Heartland Kidney Network has added another colorful poster on essential elements of communication to their excellent short course called Heartland Huddle Up to Improve Communication.  This one is on “What Type of Coach Are You?”  It joins earlier pages on active listening, body language, emotional awareness, words matter, shared decision-making, retaliation, and teach-back.  Find them all at http://heartlandkidney.org/providers/article/heartland_huddle_up_to_improve_communication .

8/16+ NW16 PKD Events, Seattle

The Seattle Chapter of the PKD Foundation will host an August 16, 2017 Coffee Chat in Factoria (Bellevue WA) to promote networking among people affected by PKD.  The discussion is informal, but a topic or guest speaker is usual.  For details and to sign up, see http://support.pkdcure.org/site/Calendar?view=Detail&id=101732 .  These events are held more or less monthly; the next one will be September 10, 2017.  Watch https://pkdcure.org/chapter/seattle/ for details.

The PKD Foundation will also sponsor an August 19, 2017 Seattle Friends & Family Potluck Picnic & Lemonade Stand, in Seward Park (Seattle).  Find more information at http://support.pkdcure.org/site/Calendar?view=Detail&id=101846 .

The Foundation will also sponsor the three-mile Seattle Walk for PKD on October 1, 2017 at Green Lake (Seattle).  For details, posters, to register for the Walk or the associated Penny Kids Dash, and to donate, see http://support.pkdcure.org/site/TR/Walk/WalkforPKD?fr_id=1766&pg=entry .  So far they have pledges of $10,000 for the Walk, and they seek at lease $45,000 more to support PKD research and create better lives for those impacted by polycystic kidney disease.

9/24 NW16 Kidney Kids Event

On September 24, 2017, NW Kidney Kids will sponsor a benefit 5K, 10K, and Family Run/Walk in Portland.  This first-annual event will celebrate all people impacted by kidney disease and bring together the community to support children living with chronic kidney disease.  You can create your own team to raise donations, join an existing team, register to participate in one of the races or Run/Walk, or simply make a donation, all at https://www.crowdrise.com/strutyourkidney .  Find a colorful poster announcing the event at https://s3-us-west-2.amazonaws.com/nwrn.org/files/N/NWKKstrut0917.pdf .  If you have questions or want to get involved in the event or organization, contact Race Director Lauren Lynn at lauren@nwkidneykids.org or 541-499-2018.  NW Kidney Kids is the only organization in the Northwest focused on serving children and teens with chronic kidney disease and their families.