Thank you to all of you who helped us raise over $650,000 during our 2022 Campaign to start a DCCR Study!
Our Campaign is now closed but a new Campaign will start this Summer.
We are often asked why we feel Running For Research ♥ Prader-Willi Syndrome is the right place to make a donation. What makes RFR special? How are we unique?
RFR is unique for 2 very important reasons:
- The first reason is that RFR raises money ONLY for the PWS Research Fund at the University of Florida. This fund is under the direction of Dr. Jennifer Miller. Dr. Miller is a singularly devoted PWS researcher and clinician and her reputation as both is world renowned.
- The second reason is that RFR is a directed fundraising event. This means that the research projects to be funded by the monies raised are predetermined. Everyone who joins our team to fundraise or who donates to RFR knows exactly where their money will be going and for what purpose. There is no guesswork!
Dr. Miller has the largest PWS patient population in the world. This puts her in a uniquely qualified position to determine what topics of research could make the largest impact. The largest impact on people living with PWS TODAY. We are not raising money for a cure. We are raising money for treatments and medications to ease the suffering of the community as it exists NOW. Mouse model research is not the goal of RFR.
Whether you join our team as a fundraiser or support us with a donation, please know that you are spending your money wisely. We are a completely volunteer driven organization and have no overhead. This mean that your money doesn’t go toward salaries or expenses, just PWS research.
In addition to continuing supporting 2 important studies started with our 2021 campaign (see below), we are very excited for our 2022 Campaign to fund a multi-center trial of Diazoxide Choline Controlled-Release (DCCR) in patients with Prader-Willi Syndrome who are in Nutritional Phases 1b, 2a, or 2b. This study will be conducted at 4 sites across the United States: University of Florida, University of Louisville, University of Minnesota and Nationwide Children’s Hospital in Columbus, Ohio.
Please Read More and donate to help us reach our $650,000 goal to fund this very important and promising study.
We are also supporting the following studies started with our 2021 Campaign:
- The first is a continuation of the Gut Microbiome study that is slated to begin later this year and was started thanks to your 2021 campaign donations.
- The second project is the study of sleep related issues within the PWS population.
Excessive daytime sleepiness ( EDS) is very common in developmental disorders. It is estimated that approximately 75% of people with DD suffer from some level of EDS. However there is very little research into this condition. Most of the knowledge the scientific community has about EDS and its impact on those experiencing it is anecdotal.
EDS can have wide ranging and significant consequences. It is associated with conditions like heart disease, stroke, diabetes, cognition difficulties and poor social skills.
What impact does EDS have on PWS specifically? The answer is not known. What is known is that the occurrence of EDS within PWS is quite high. Is there a link between EDS and hunger? It is well established that in the typical population, fatigue increases hunger and often leads to poor dietary choices and weight gain. Could that also be the case in our community? Is there also a link between behavioral issues and EDS? It seems likely.
Because of a lack of research and data collection, these questions are unanswered. If we can’t define the problem and the frequency of occurrence, how can we draw causation conclusions? Without evidence based conclusions, there will be no real movement toward solutions and treatments to address the issue of EDS. Please take a look at this short article about this issue.
This is where RFR would like to step in. Dr. Jennifer Miller at the University of Florida is proposing a study of sleep disorders in PWS persons. The goal is to collect data of EDS within a wide selection of age ranges. This data, once collected, will hopefully provide a path toward effective solutions and treatments. In order to fund this study, we need your help! We are looking for people to join our running team and raise money for our mission. We are also looking for donors.
Please register to join us or make a donation to our cause. Without your help, no inroads will be made into this significant and life altering aspect of PWS.
All donations will be received by the UF Foundation for deposit into the PWS Research Fund at the University of Florida
You will be transferred to the University of Florida donation site