Multiple Clinical Trials Seek New Approach to Treating Prader-Willi Syndrome
The Copelands
Saylor Kate has won the t-shirt design contest! She is 8 years old and has two brothers with PWS. Let’s congratulate the entire Copeland Family.
Great News!!
Carmen Garcia Fernandez, mom to Javi, and one of our spectacular team members/fundraisers, found out last night that she won her employer’s worldwide contest, DHL’s Got Heart. Carmen entered the contest with a goal of raising awareness of PWS and money for RFR. Carmen chose to hold a padel tournament in Madrid , Spain and …
2023 Running for Research Campaign
Thank you to everyone who supported us this year. We exceeded our campaign goal by over $100k! The Clinical Outcome Assessment Project, funded by this year’s fundraising effort, is already underway. Great progress is being made and I’ll share updates as I receive them so that you can see what your donation is accomplishing. Your …
ATTENTION ALL GAINESVILLE 5K FUN RUN and KID’S RACES ATTENDEES
This is a very important announcement regarding this Saturday’s event. Due to unforeseen circumstances, the location of the Gainesville 5K Fun Run and Kid’s Races has been changed. The new event address is the UF Health Professional Park, 3300 SW Williston Road, Gainesville, Fl 32608. The event will begin at 10am. Please park in the …
Clinical Outcome Assessment tool Partnership
Great news! I am pleased to announce that RFR has entered into a formal partnership with Dr. Jennifer Miller, TREND Community, Ardea Outcomes and COMBINEDBrain to begin the process of creating a new Clinical Outcome Assessment (COA) tool. This process will involve the above-mentioned parties but also the PWS community and its key opinion leaders …
Donation Match!
Thanks to an anonymous donor, RFR has the opportunity to match all donations received between December 21 and December 31st (up to $20,000 total.) This is a great chance to make your donation double in impact! If you have any holiday charitable giving yet to do, please consider making a donation today to RFR. Thank …
THE GUT MICROBIOME OF PWS INDIVIDUALS STUDY RECRUITMENT IS NOW OPEN!!!!!
Recruitment for Gut Microbiome Study RFR: RFR is pleased to announce the opening of recruitment for the Gut Microbiome in PWS Individuals study that was funded with the money raised in the 2021 RFR fundraising campaign. Please read the following recruitment information and, if interested, please contact Lauren Harvey as described below. Two different arms …
Soleno Therapeutics Press Release
Running for Research – Prader-Willi Syndrome to Fund Multi-Center Study of DCCR in Early Phase Prader-Willi Syndrome