From the CEO's Desk: Working Together to Grow Our PWS Research Investment

from-the-ceos-desk-working-together-to-grow-our-pws-research-investmentOur team recently presented a summary of our 2018 programs and 2019 plans to the FPWR board of directors and, in reflection, 2018 was a great year of progress in PWS research!

Thanks to your confidence in FPWR, our donor base has continued to grow and as a result, we have committed to increase our 2019 research investment by 75%. We understand the urgent need you have for new treatments for your loved ones. Since our founding, our goal in research has been clear, invest in building the body of knowledge of Prader-Willi syndrome so that therapeutic advancements can be made. To that end, in 2018 six PWS clinical trials were launched with our industry partners across phase I, II, & III. Three to four additional PWS clinical trials will launch in 2019 and we continue to lay the ground work for the pathway of drug approval and reimbursement. 

We continue to invest in genetic research in order to unlock potential approaches for genetic solutions. We are particularly proud to see research that we have been funding for over 10 years now receiving additional funding from industry in an effort to move the work closer to clinical trials. It will take time to determine if this is possible, but FPWR is becoming a force multiplier in genetic research.

It has taken a village to bring us to where we are today. Community members participating in volunteer driven fundraising events such as One Small Step walks, golf tournaments, 5K's, marathons, festivals, and galas have all contributed to our amazing success. Thank you!

If you have never hosted an event, please consider hosting one. If you have hosted in the past and not done so recently, contact us and see how you can reengage your efforts. Or if you have always supported FPWR, let’s discuss how we can better support your efforts! We need your support in order to continue to fund research and achieve our vision of a world where our loved ones with Prader-Willi syndrome lead full, healthy, and independent lives.

There is so much more that we are working on. I'll leave you with a quote from Henry Ford: “Coming together is the beginning, keeping together is progress, working together is success.”

Please contact me directly with any questions or concerns. Thank you for all you do!

take action for pws research fundraising tool

Topics: News

John Walter


John Walter is Chief Executive Officer of the Foundation for Prader-Willi Research, leading the organization in its next phase of growth and work with its leadership and research teams to accelerate research and the development of therapies for PWS.