HDCN Online Slide/Audio Symposium    
Polycystic Kidney Disease Research Foundation Sigma-Tau Pharmaceuticals
9th Annual Conference on Polycystic Kidney Disease, June 1998. Selected Talks.
Web presentation sponsored by an unrestricted educational grant from Sigma-Tau Pharmaceuticals


Why finding a cure for PKD is so important


Mr. Thomas G. Flesch

Mr. Thomas G. Flesch
Chairman, Board of Trustees, Polycystic Kidney Research Foundation. President and CEO, Gordon Flesch Company, Columbus, OH

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Mr. Thomas Flesch
Welcome
Thank you, Dan. Good morning. I have to correct Dan though. He said if you have any questions, then ask the Board of Directors. I don't think you want to ask us a lot of questions. I don't know if we know a lot of things, Dan. But welcome, everybody, to the 9th Annual Conference. It is great to see you. I think this is my 7th conference, and it's really great to come here and see people who have been here over and over over the last few years and see good friends, not old friends but good friends and old acquaintances who have been part of this organization for a long time, and we continue to get their support. It is important we do that over the years.

A sincere welcome to our international guests and friends
I also want to welcome all of you new people. It is amazing how many new people we have in this audience. Last night at our reception dinner, we had people from Iran, Australia, Japan... I think we have somebody from Italy here; and I don't know if we have ever had such an international flavor at our conference. I think that is a first, and I really... and Mexico. I know we have a lady from Mexico here today. So it is just fantastic that the word of PKD is getting out and spreading beyond the United States, beyond our boundaries and beyond our borders, which bodes well for our organization and for our disease. The more awareness we've got out there, the better chance we are going to have of finding a cure and succeeding in our mission.

About the Board of Trustees
As far as the Board of Directors goes, I think it is important that you know a little bit about us. We are volunteers just like all of you who participate in Friends groups and other organizations of PKD. We have 16 people on our Board. Twelve of those individuals have PKD either in their families or as individuals affected by their lives. Several of our Board members have had transplants. Myself -- our family, of course, has had PKD forever. My grandmother had PKD. My aunt had PKD. My father had PKD. He was dialyzed for seven years. He also had a transplant. He died three years ago of complications of PKD. Myself -- I have PKD. So your Board who volunteers their time to guide and hopefully put this Foundation in the right direction is very familiar with your cause. We are very familiar with the disease, and we are passionate about the disease. We are very passionate about finding a cure for PKD.

Last year, the PKR foundation raised $750,000 dollars to fund PKD research
Through the efforts of a lot of you last year, a lot of the Friends organizations, the staff, the Board, other volunteers, wonderful benefactors and donors, the Foundation funded over $750,000 of research in PKD. That is a first, and I want to thank all of you for helping us accomplish that goal. That's an unbelievable feat.

Our goal for this year is to raise 1 million dollars!
This year we have a goal. It is a large goal but with your efforts, I think we can make it. Friends organizations are expanding, I know our Board is expanding, our benefactors are expanding, our staff has expanded and is doing a fantastic job. But our goal this year is to fund $1 million worth of PKD research, and I think we are going to achieve that this year as well. So, thank you in your efforts to achieve that goal.

The importance of making our case to Congress for more PKD funding
Lastly, I would like to just mention thank you to all the people who volunteered, came here early, and did lobbying yesterday up on the Hill. I had the pleasure of accompanying our Ohio group. We made four or five calls on the Hill to different congressmen and senators. I think we really made some impact. We had about 170... 175 people, I believe, make calls on the Hill yesterday. That is over double what we did three years ago.

Our plan is to come here every three years, come back to Washington D.C., and hit the senators and hit the congressmen again. And for those of you who did it, those of you who went to the Hill and made calls on your senators and congressmen, and maybe you talked to some aides, and if it was your first time, you probably thought, "Well, I don't know how successful I was or how effective I was" or "They weren't very receptive." But you are not going to get response the first time usually. It is going to take an effort. It's going to take more than one call.

Importance of follow-up letters and calls to Congress
So I encourage you to do the follow-up letters; make the telephone calls; every six months write them a little note, send them something about PKD that you get in the mail from the Foundation and say, "I just thought I would keep you abreast with what is going on with PKD and were our progress is going in research", whatever it might be. Stay in touch. If you come into town, make an appointment to go see the aide or go see the congressman or the senator again and plead your case. Don't stop just here with one call. It is vitally important that you commit that you are going to make calls on your congressman or senators now and forever because that awareness... they're the ones who can really make a difference in research dollars.

PKD research is relatively underfunded
Right now at the Federal government, we are getting only about $7.5 million in research moneys each year. That is just a drop in the hat when comes to what is available for research dollars at the Federal government. We deserve a lot more than that. The only way we are going to get it is if people in this room work hard and remind their congressmen and senators that we need funding appropriate for the disease that we've got, which is affecting 600,000 people in this country. So please, continue that process. It's worth it. It's the only process we've got in this country.

Our goal is to put ourselves out of business
As a businessman it is kind of strange working for a foundation that... this is the first time, actually, that I have ever tried to work hard to put myself out of business. But if we succeed in our mission and we succeed in our goal, maybe someday we won't need this Foundation, which will be the greatest day for myself and I think for all of us in this room and more importantly for our children. And that is truly our goal. We are passionate about that goal.

Another word of thanks
I know a lot of you share in that goal and we just really appreciate all of you coming here, coming to Washington D.C., dedicating your time, putting your efforts in, volunteering in Friends organizations and doing what you can to see us accomplish that mission. It is vital to us and it is vital to our children and their children. We are well aware of that.

So, again, thank you for coming. Thank you for your support. Thank you for everything you did this year to help us achieve our goals of $1 million in research. I hope you enjoy the conference.

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