Celebrating #11

Siena had an amazing weekend celebrating her 11th Birthday!! Thank you to everyone who followed along on her Birthday Countdown and donated to her FPWR fundraising page we are just $300 shy of our $1500 GOAL! http://act.fpwr.org/site/TR?pg=personal&fr_id=1732…

But, NOW we DO need to ask for one more favor!!

AND WE Thank You in advance from the very bottom of our hearts…

The PWS community received some disappointing news last week. The FDA declared that it will not review DCCR without an additional clinical trial. DCCR is a drug that has been developed by Soleno to treat hyperphagia (insatiable hunger), one of the most debilitating symptoms of PWS. This decision could cost years, or worse, the loss of a potential treatment. It’s a huge setback for PWS families. DCCR is the FIRST drug to address hyperphagia, and has also has been found to be effective in treating aggressive/destructive behaviors, fat mass and other metabolic parameters. https://www.biospace.com/…/soleno-therapeutics…/Importantly, it is also safe. https://soleno.life/dccr/

Clinical trials take A LOT of time and money. If the FDA does not overturn its decision, Soleno may not continue with another trial due to financial constraints. We need this drug as treatment.YOU CAN HELP!

Simply complete this 5 question survey – it takes about 3 minutes. We’re very grate-FULL for your support! Responses will be shared with the FDA as we continue to advocate for safe, effective treatments. AND PLEASE SHARE!

https://fpwr.us/38slJuB (Not sure what to say in the survey?)

Answer key

1. Other

2. 11

3. Yes

4. Everything! DCCR has shown to be safe, effective, and is the only viable treatment for the most major symptoms of PWS. It can save lives. Plain and simple. It is critical to get this drug in the market as soon as possible!

5. No


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