| PWSA | USA THE PULSE
Vol. 31 | August 27, 2021 |
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Attention Federal Employees!
Between September 1, 2021 and January 21, 2022, you can support PWSA | USA during this year's Combined Federal Campaign (CFC)! The CFC is a program through which you can give to the charity of your choice. The campaign’s mission is to provide “all federal employees the opportunity to improve the quality of life for all.” Please consider supporting PWSA | USA as we continue to provide help and hope to families around the world.
PWSA | USA’s CFC ID # is 10088 |
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Webinar: Become an Advocate for PWSA | USA |
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If you didn't get a chance to join our Advocacy Webinar, the recording is available by clicking the image above. Special thank you to Community Engagement Coordinator Dorothea Lantz for sharing how our community can help bring awareness to PWS.
Description: Advocacy is not just for lobbyists. Anybody can be an effective advocate. Join PWSA | USA and learn how you can help bring PWS awareness to states throughout the country. At PWSA | USA we understand that state governments and the federal government both play a unique and irreplaceable role in supporting these efforts. Join our team of advocates and learn how you can help! |
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Show Your Support for the STAT Act! |
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Make your voice heard…STAT! The EveryLife Foundation for Rare Diseases is seeking advocates to share quotes, photos, and/or videos to express their support for the Speeding Therapy Access Today Act, or STAT Act. Advocates are encouraged to share how their specific rare disease journey will be positively impacted by a specific aspect of the STAT Act. Please send a one-two sentence quote and photo and/or video (no longer than 60 seconds) to Dorothea Lantz, PWSA | USA’s Community Engagement Specialist, at Advocacy@pwsausa.org as soon as possible. Your quote, photo and/or video will be shared on EveryLife’s and PWSA | USA’s social media and website and in presentations and communications to stakeholders and policymakers.
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Founded in 2017 by Jessica Patay, mother to a 17-year-old son with Prader-Willi syndrome, We Are Brave Together (WABT) is a nonprofit organization whose mission is to support caregiving mothers to children, any age, with any diagnosis, disability, or challenge, including learning differences, ADHD, and mental health issues. This international community includes over 1350 moms in 45 states and 10 countries. Passionate about serving and encouraging moms of special needs children everywhere, Jessica wishes she could look every mom in the eyes and tell her, “You are not alone.” |
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PWSA | USA is pleased to offer grant assistance for scientific researchers with an interest in improving the lives of those with PWS. PWSA | USA is seeking to fund projects for a one- to two-year grant support aimed at discovering and developing treatments and technologies benefiting those with PWS.
Letters of Intent (LOI) submissions will be accepted starting September 1, 2021 with a due date of November 8, 2021.
The current focus of PWSA | USA research is supporting projects that have the potential for immediate and high impact for the PWS community. Therefore, PWSA | USA will support research-based translational grants or those showing high promise for translating basic biomedical knowledge to clinical application. The goal is to fast-track better treatment for the syndrome.
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Welcome Spring Velazquez! |
We are pleased to welcome Spring Velazquez as PWSA | USA's new Development Specialist. With over 25 years of non-profit management experience from higher education to human services, Spring is thrilled to join PWSA | USA as our Development Specialist. Most recently she spent eight years with Make-A-Wish which helped her develop a deep understanding of families with children who have been diagnosed with rare or critical childhood illnesses. Prior to working at Make-A-Wish, Spring was the Director of Donor Relations at Widener University and was responsible for managing all aspects of donor and alumni giving. Spring brings a wide range of skills and knowledge of fundraising and development to help PWSA | USA fulfill our mission to enhance the quality of life of and to empower those affected by Prader-Willi syndrome. She lives outside of Philadelphia, PA with her husband, her dog, and six cats. When she’s not busy working, Spring is volunteering with other non-profits that serve children, and working on her final project in the Penn State Master Gardener’s program with a focus on “providing gardening as therapy for children with different abilities." |
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Changes in PWSA | USA Membership |
PWSA | USA is continuously looking for ways to be as inclusive as possible for our community, families, and individuals living with PWS. One of the ways this can be accomplished is by revamping our membership criteria. Going forward, we will open our membership up to anyone who shares our mutual interest in helping individuals and families impacted by Prader-Willi syndrome. We will offer our materials and services to all, not just members. With this change, PWSA | USA hopes to expand its community and provide services to a wider range of families and individuals, better serving our mission. We thank you for your support and understanding as we make this transition and ask that you reach out to info@pwsausa.org with any questions you may have. |
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Make a Difference by Becoming a PWSA | USA Volunteer! |
Do you want to get more involved with PWSA | USA? We are looking for energetic, passionate individuals to help us carry out our mission and support those affected by PWS. Please click the button below to access our Volunteer Application. If you have any questions, please reach out to |
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Important Message About This Newsletter |
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The information provided in this email is intended for your general knowledge only and is not intended to be a substitute for professional medical advice, diagnosis or treatment. Always seek the advice of your physician or other qualified healthcare provider with any questions regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read in this publication. |
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Your gift to PWSA | USA ensures individuals and families living with Prader-Willi syndrome have the connection, guidance, and hope they so desperately need. Thank you! |
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