Ep57 Pulse 130: Direct Support Professionals Week, DUR Written Testimony, Recursos en Español
Description
The latest in PWSA | USA events and PWS news in research, family support, and advocacy.
24 Hour Crisis Line: 941-312-0400
Direct Support Professionals Week
In Recognition of Direct Support Professionals - Prader-Willi Syndrome Association | USA
PWSA Memory
Share your PWSA Memory: 50 Year Anniversary - Prader-Willi Syndrome Association | USA
Events
PWSAUSA 50th Anniversary: Journey of Hope Celebration - Campaign
Hotel Options: Where Can We Take You? | Endless Experiences & Top Locations | Marriott Bonvoy
Journey of Hope Gala Honoree Spotlight: Janalee Heinemann - Prader-Willi Syndrome Association | USA
Fundraisers
Cocktails for a Cause- A Night for Prader-Willi Syndrome - Campaign
PWSA Fundraising Pages - Campaign
Spotlight on Hope
Share Your Story - Prader-Willi Syndrome Association | USA
Advocacy
Calling Minnesota PWS Families - Prader-Willi Syndrome Association | USA
Calling Montana PWS Families - Prader-Willi Syndrome Association | USA
Calling Alaska PWS Families - Prader-Willi Syndrome Association | USA
Help Expand Disability Services for PWS – Share Your Story - Prader-Willi Syndrome Association | USA
Family Support
Grandparent Perspectives - Prader-Willi Syndrome Association | USA
Ask Nurse Lynn: Glucose Monitoring - Prader-Willi Syndrome Association | USA
Submit your own non-emergency medical question: Ask Nurse Lynn - Prader-Willi Syndrome Association | USA
Research
Social Skills in Children with Prader-Willi Syndrome: A Survey of Caregivers | QuestionPro Survey
KKrukowski1@thechicagoschool.edu
Harmony Biosciences TEMPO Trial Webinar Recording: Harmony Biosciences TEMPO PWS Study Webinar
Aardvark Therapeutics HERO Trial: U.S. Sites Now Open - Prader-Willi Syndrome Association | USA
Gainesville, Florida
UF Shands Childrens Hospital
Contact: Jennifer Miller, MD
Phone: (352) 294-8229
Email: millejl@peds.ufl.edu
Recursos in Espanol:
"Hoja de información del estudio clínico HERO"
una folleto "Estudio HERO"
Prader-Willi Syndrome Clinical Scholarship Announcement - Prader-Willi Syndrome Association | USA
Request for Prader-Willi Syndrome Research Grant Applications
Announcements/Resource Spotlight
Sleep Summit - Prader-Willi Syndrome Association | USA
This episode is sponsored by Soleno Therapeutics, the makers of VYKAT XR. While PWSA | USA does not endorse any specific treatment, we recognize the importance of sharing information about options available to the PWS community. Decisions about medical care should always be made in consultation with a qualified healthcare provider. Please visit www.vykatxr.com for information on use and potential side effects.
Intro Music: https://www.bensound.com/ License certificate #2242442
United States
