PWSA Blog

Donor Spotlight: Elaine Towle

PWSA | USA is special because of YOU, our donors, who passionately give to support our mission. It is because of your generous gifts that we can provide help and hope through family support, advocacy, and research efforts. To celebrate and honor your generosity, each month we will spotlight a donor and their story showcasing...

My Sister Linda

Linda was the oldest, born in 1951 in New York City. Prader-Willi syndrome wasn’t discovered until 1956. My parents noticed Linda would go to the refrigerator often and that she was a bit short for her age. We moved to San Diego in 1961. Linda loved playing tennis, swimming, and eating out. She especially loved...

Donor Spotlight: Michelle Spring

PWSA | USA is special because of YOU, our donors, who passionately give to support our mission. It is because of your generous gifts that we can provide help and hope through family support, advocacy, and research efforts. To celebrate and honor your generosity, each month we will spotlight a donor and their story showcasing...

National Adoption Day: Michael’s Story

After almost ten years of attempting to become parents via fertility treatments, failed foster care adoption committees and even an adoption facilitator scam, we learned about a very special little two-month-old baby boy named Baby M, who had been diagnosed with Prader Willi Syndrome, through Special Angels Adoption Agency. He had been born at Yale...

Spotlight on Hope: Isaac Davis

We are starting a new initiative to inspire HOPE for our PWS community! Spotlight on Hope will share stories about individuals living with PWS: stories about a recent triumph, big or small, overcoming a challenge, being recognized in their community, or anything that inspires hope or joy in their life and those around them. If...

Join PWSA | USA, FPWR in Combined Community Conversation to Discuss FDA Advisory Committee’s Decision on LV-101 Carbetocin Nasal Spray

PWSA | USA and FPWR will host a combined Community Conversation on Tuesday, November 9th at 8:00 p.m. EST. PWSA | USA CEO Paige Rivard and FPWR Director of Research Programs Theresa Strong will discuss the outcome of the November 4th FDA Advisory Committee Meeting regarding LV-101 carbetocin nasal spray. This will serve as an...

Donor Spotlight: John Lens

PWSA | USA is special because of YOU, our donors, who passionately give to support our mission. It is because of your generous gifts that we can provide help and hope through family support, advocacy, and research efforts. To celebrate and honor your generosity, each month we will spotlight a donor and their story showcasing...

How to Watch the FDA Advisory Committee Meeting

On Thursday, November 4, 2021 from 8:45 a.m. to 3:30 p.m. EST, the U.S. Food and Drug Administration (FDA) will hold an Advisory Committee Meeting to discuss the new drug application (NDA) 214812, for carbetocin nasal spray, submitted by Levo Therapeutics, Inc., for the proposed treatment of hyperphagia, anxiety, and distress behaviors associated with Prader-Willi...

SIGNATURE EXTENSION: Encourage your Congressman to sign Rep. Gottheimer’s letter urging House leadership to oppose the harmful changes to the ODTC!

Update: Deadline for signatures EXTENDED to close of business Monday, October 25, 2021 Rep. Gottheimer of New Jersey has drafted and is gathering signatures for a letter to House leadership urging them to oppose the harmful changes to the Orphan Drug Tax Credit. Please consider taking action by clicking the button below. Thank you for...

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