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PKD Foundation News

From our CEO: Vision for the future

We have much to look forward to in 2018 at the PKD Foundation! To give you a glimpse into our exciting plans for the coming year and beyond, our CEO, Andy Betts, hits on major developments that will benefit the PKD community:

With the start of a new year, we are focused on continuing to put patients at the forefront of everything we do. Now six months into our five-year plan, our major goals over the next four and a half years to benefit the PKD community are to increase our research investment by 300 percent, increase awareness to help raise funds by $70 million, create the largest PKD registry for patients, and to keep growing our community so people don’t feel alone.

We have many new developments coming in 2018 that will help us reach our goals. These include:

  • Creating PKD Connect, our new patient support and resource center.  The official launch of this patient and family-focused service will come this summer at our national conference by the same name, from June 29 to July 1, in Kansas City.
  • Continuing advocacy efforts. With Alexis Denny as our Director of Government Affairs in Washington, D.C., along with former congresswoman Karen Thurman, we can keep our community aware of critical action on the Hill and leverage more funding from federal agencies. Our goal in the next few years is to leverage an extra $200 million toward PKD research, and we know we can do this with the help of our community reaching out and contacting their congressperson.
  • Doubling the number of researchers funded. As more funding becomes available, it’s important for us to have the applicants to match. We want to continually usher in new waves of researchers in nephrology. Of all the fellowships we’ve funded in the past, the majority of those people are still involved in PKD research to some extent. Our funding programs can be a catalyst to their careers in this field.
  • Establishing our Founder’s Council. This group, comprised of our most affluent supporters, will cover our overhead cost at the Foundation, allowing us to put 100 percent of all donations toward research and other program costs. We believe that this Council will not just be successful in terms of those families giving larger gifts than previously, but also in energizing the community at large so their money can go directly to our cause.
  • Launching our patient registry. Our existing database of hundreds of thousands of people affected by PKD has the potential to help us collect data and connect patients with studies they are eligible for. An increase in patient participation in clinical trials can potentially get us closer to approved treatments faster.

We have so much coming up, but six months in, we still have the same level of optimism about our goals that we had at the start. We can’t say that the end of PKD is in six or 12 months’ time, but we can say the possible first treatment is on the horizon and that there are more clinical trials today than there were even 12 months ago.

We’re starting to see an uptick in revenue with more money going to research and more long-term commitment from supporters. Everyone is involved in this powerful momentum, from our major donors to people who give us $5. Our job now is to make sure we use these funds wisely and increase the amount we put toward research to find treatments and hopefully a cure for people who need it.

2017 was a good year for the PKD Foundation. And I know, with the community’s help, 2018 will be even better. Working with this momentum that we have, I look forward to updating you on our progress.

You have the power to help us keep the momentum going. Become a Hero For Hope today and 100% of your monthly donations will go toward critical PKD research.

Comments

  1. Dawn says:

    Great news but I’d like to hear more about how we will raise awareness- ads, PSAs, etc. People donate to what they know. PKD needs to be a household name!!

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