I am in DC at the airport about to leave to go home having just spent the day telling politicians from our state our story to raise awareness about PKD.
The meetings were set up by the PKD Foundation. About 50 (?) people flew in from across the country to talk with their legislators about these issues relating to PKD. Included in this weekend was a board meeting and committee meeting for which I am a non-voting member.
I am not the most comfortable lobbying for PKD. I have the desire, but I am very intimidated by the entire process. In today’s case, the Foundation’s Government liaison made it extremely easy. He set up the appointments, he provided written materials for us to work from, a map of the office locations, and gave us a quick training session on the discussion items for us to cover.
I was still intimidated. But that’s okay. Lobbying is an important step in being an advocate for the entire PKD world as a whole. I realize that research funding and advancements won’t help Gage and Quinn’s disease progression. But that isn’t really the reason I did it and hope to continue to do it – I do it as a way to honor their resilience at what they have been through and will go through in the future. I do it as a way to honor the many other PKD families that have helped me in the past become a better advocate for Gage and Quinn. And I do it for the families in the future that will be faced with this disease. And I do it because I think it would be incredible for Gage and Quinn to see a treatment for PKD in their lifetimes. And wow, to be a part of that would be amazing.
As usual I admire your strength with dealing with this disease! Your children are lucky to have you as their mom.
You are an amazing woman and mother. Thank you for what you do. Hope Gage’s first day back was spectacular. Thinking of you and your family.
Jen and the boys
You go, Julia! My first phone call to my rep was a few weeks ago and my voice shook so much when I was leaving the message. I much prefer email, but like you, have to do what needs to be done for future generations affected by PKD.
Hi Julia – thank you for all that you do for your children and for PKD, I really admire you!
I personally think that you have it backwards….lobbying should be a cakewalk compared to the challenges you and your family face on a daily basis! I used to agree with your sentiment, but now that I’m officially old, crabby, and facing my own PKD challenges, I want our government to not only listen to our pleas but act responsibly. Don’t ever let lobbying intimidate you…..you have more than earned the right to stand up to our government officials and be heard. Thanks so much for being part of this process with us!
{{{HUGS}}}
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