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PWSA | USA
THE PULSE

Vol. 30 | August 20, 2021
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 are able to provide help and hope through our family support, advocacy, and research efforts. To celebrate and honor your generosity, each month, we will share a Donor Spotlight and story to reveal the dedication, gratitude, and optimism that defines us as a
PWS community!
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 and Federal governments both play a unique and irreplaceable role in supporting these efforts. Join our team of advocates and learn how you can help!

“The journey of a thousand miles begins with a single step” ~ Tao Te Ching
Speaker: Dorothea Lantz

Dorothea Lantz is the Community Engagement Specialist for PWSA | USA, a licensed Real Estate Broker with ONE Sotheby’s International Realty and a lifetime resident of Miami, Florida. In July of 2017, she and her husband were blessed with their son, Hunter, who was diagnosed with PWS at 16 days old. Dorothea has an extensive background in public service, government administration and is a contributing member of the South Florida and PWS community. She has been a Parent Mentor with PWSA | USA since 2019. In addition, Dorothea is an appointed member of the City of South Miami Environmental Review and Preservation Board and a Mentor with the ACE Foundation Women's Leadership Institute.
The BENEFIT Act, HR 4472 / S373, has obtained more bipartisan support in the US House of Representatives! Representative Doug LaMalfa (R-CA) has signed on to show his continued support for the rare disease community. The BENEFIT Act is a bipartisan piece of legislation that would require that the FDA disclose whether and how patient experience and/or preference data was used in the benefit risk assessment of a new drug. It will ensure that patient voices are being heard and allow for patient stakeholders to continue to work with FDA to refine the data that they need to make decisions. With everything our community has experienced throughout the last year, we know it's more important than ever to have the FDA consider patient experience as a part of their approval process. Help the voices of our community be heard and encourage your elected officials to co-sponsor this bill today!

Help encourage your elected officials to support the rare disease community by sending a letter of support.
Show Your Support for the STAT Act!
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 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 1-2 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. 

PWSA | USA Webinar: Homeschool - What You Should Know
If you didn't get a chance to join our Homeschooling Webinar, the recording is available by clicking the image above. Special thank you to Julie Casey and Danielle Warmuth for sharing helpful information about curricula, services, and socialization!
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.

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.
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
To plan your custom PWSA | USA fundraiser, contact events@pwsausa.org.
Important Message About This Newsletter
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.

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!