377) At a PKD Austin Chapter Meeting

August 15, 2009

Austin Chapter PKD Foundation Meeting: Liz and I attended the August meeting today to be part of the planning for the September PKD Walk, which Shayna has taken on as her community project for her Bat Mitzvah community project. Shayna was on her way back from the coast so we represented her and volunteered her for working with working with the younger kids attending the walk with their parents. Liz has attended these chapter meetings in the past, and I am embarrassed to say that this was my first actual meeting, although I have participated in a number of the walks, raised money, and blogged about them for several years [Posts # 282, 164, & 55]. This year's walk will be in the same location as last year's, right near our neighborhood, at Arbor Trails.

The Chair graciously welcomed Liz when we arrived, and we told her (Francine) about my transplant and she hugged me and was happy for us. We found our seats and I introduced myself to Joan, a woman who'd received a transplant some years ago, and we immediately began discussing doctors, conclu
ding with sharing the recommendations I have for Judith Betts because of her brilliance, caring and comfortable attitude toward patients, and responsiveness to her patients.

The meeting followed a detailed agenda, including updates on projects, a report from our PKD Foundation Rep., Laura, detailed planning for this year's walk with Candace leading the way, a short report on the National Conference from the new chair, Randy, and concluding remarks from the outgoing Francine. Towards the end she announced my transplant, and I quickly gave a report and referred
folks to this blog for more information. Liz... to my left and a little behind me in her chair... tearily added some to my story... and later said she was surprised she teared up at that moment. It is still an emotional story when we tell it sometimes... especially to groups who understand the blessing of a kidney transplant when so many folks with PKD end up dying without receiving one. I don't recall the stats on this, but if Randy reads this, maybe he'll comment on that statistic.

Related to the Walk: Candace reported on details so far, and encouraged us all to begin to advertise with posters, flyers, and getting our PKD Walk websites going. She reported on her own door to door experiences and fired us all up about what we can personally do to encourage people to GIVE MONEY for our cause of finding a CURE FOR PKD. Liz and I are inspired... her to take info to U.T. School of Social Work... me to take it to our TNOYS Conference next week.

In talking to Candace about Shayna's role in helping she brought up the idea of Shayna working the Inflatable for the little kids; including watching numbers inside at a time, keeping the big kids out, organizing kids' shoes upon entry and exit, and maybe even bringing some of the Awesome Foursome to help her. I volunteered to work with the Sumo Wrestling activity, which, I guess has to do with getting larger kids and adults into and out of the Sumo Suits. Both of these activities are planned to bring people out for the event and to keep people there for awhile to mix and mingle with PKDers and learn more about PKD and it's affect on families.

There are also plans to have a fire engine there and maybe even a band. All agreed that the "PKD Heaven" display was a great addition last year and it really brings home the seriousness of PKD as a disease that impacts all people. So, we are now in the season of getting out the donations for PKD research and completing Shayna's Community Project, and I, for one, am excited about the event!

Francine concluded the meeting with presenting a plaque the chapter received recognizing their contributions for funding research, which one of the past leaders who has passed on had much to do with.

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