Families often find themselves wondering what life could possibly look like for their loved one with Prader-Willi syndrome (PWS). There is usually little clarity upon having a new diagnosis and sometimes that can be intimidating for new families. Now imagine having a newborn with PWS in an era before PWS even had a name! Ann
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PWCF is going on tour! Kind of. We're excited to see you all again this year in-person for our 2023 Walking for PWS events. We will be making our way up the state of California between April 30 and May 20 stopping at three major cities to bring the fun of our Walks to our PWCF
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KITE-PWS is currently recruiting for their clinical trial that is seeking people aged 17 years and older with excessive hunger caused by PWS to participate. The experimental study drug, called RGH-706, helps to block melanin- concentrating hormone (MCH), which is thought to play a key part in the brain’s food seeking mechanism. The study lasts 5-6
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After three years, TeamPWCF returned as an official charity at the Long Beach Marathon/Aquarium of the Pacific 5K. It was a beautiful race weekend filled with raising awareness. Representing eleven loved ones who have Prader-Willi syndrome, TeamPWCF had thirty-three people participate in all four races. Thirty-one people, (including seven individuals with PWS), did the 5K; four
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PWCF is proud to announce the 3 incredibly insightful and highly respected speakers for the 2022 General Education Meeting. Their range in topics and expertise in their fields have provided positive change in the PWS community. We are honored to have Dr. Kate Woodcock, Dr. Suparna Jain and Dr. Diane Stafford as speakers for our conference.
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Knowledge IS Power. Strengthen your perspective on Prader-Willi Syndrome at the GEM. Date: Saturday, October 15 at the Sonesta LAX Airport Hotel Time: 8 AM - 5 PM. Schedule and speakers to be released soon. *Early Bird Special: Receive admission to the conference for $20 off until September 1. The conference includes the full conference and lunch. Time: 8 AM -
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Thank you to the following sponsors for supporting the 2022 Walking for PWS events. With their support we are one step closer to a Full Life Without Limits for people with Prader-Willi syndrome. Please take a moment to visit their websites to get informed with their mission and their upcoming projects. Soleno Therapeutics: soleno.life Harmony Biosciences:
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Help us raise awareness for Prader-Willi syndrome by getting involved with one, or all, of these ways: Buy an Awareness Shirt In honor of this year’s theme “Show Your Colors”, we’ve created a shirt that you can wear not only on Rare Disease Day, but all year long. In keeping with the theme, this fun colorful
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Spread the love during the month of February and send a custom eCard to your loved one. Create a card here. Customize the cards to your liking! Include a personal message and a photo of your loved one or family to create a special card for your loved ones. There is no limit to the amount
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PWCF would like to introduce the new 2022 Board of Directors roster. Please join us in giving a warm welcome to the following individuals. Jennifer Paige - President Melissa Estrada - Vice President Molly Fuller - Secretary Petra Martinez-Ali - Assistant Secretary Nisha Mehta June Anne Gold, M.D. Jennifer Meade Rodney Dong Daniela Rubin, PhD Lisa
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