I have been a PKD Foundation Chapter member for 14 years. I have been to Washington D.C. three times representing kidney patients from California on a number of fronts, both with the PKD Foundation and with NKF. But I’m getting tired now. I invite you younger folks to pick up the reins. Let’s continue to do clinical trials and find a cure. When I first learned I had PKD it was 1982 after my father died from complications of PKD. I was told there’d be a cure in 20 years. Since then I lost my youngest brother to PKD. Through my volunteer work I have met hundreds of other people whose parents, children, aunts and uncles, spouses and partners have died from PKD complications. Too many people have suffered and died from PKD, and I have seen it first hand in my work through Kidney Community Education.
We need to continue to partner with businesses to accelerate drug development, and research. I myself was blessed to receive a living donor transplant in 2005, from Sally Reif, a living altruistic donor. Sally, a mother of three and a member of the US National Guard. We found each other online through MatchingDonors.com. My brother Dave had a living donor transplant three months before me, so I had a guide. I am grateful every day for what Sally did for me. It opened up a whole new chapter in my life, one in which I have been able to help other people see their transplant day. Since my transplant I have spent thousands of hours helping others in need of a transplant get the information they need. Quite a few have reached their transplant day! Since his transplant, my brother David created MatchGrid software for paired donation currently in use by several hospitals. His collaboration with hospitals has helped to save many lives. If you or a loved one are affected by PKD, please join us. Donate money. Go to Capitol Hill. Contact your legislators. Enlist your contacts. We need more of you to get involved. We need all of us to make it happen.
Sincerely,
Shar Carlyle
Recipient of a Gift of Life
