PWS United

Ep6 What's the Big Deal About Exercise?

(Please note, this episode was recorded under the name PWS Connect, and we have since changed the name to PWS United.)
Exercise is not a dirty word! Kat Lucero, PWSA | USA Board Member and certified Integrative Health and Wellness Coach and Stacy Ward, PWSA | USA's CEO, discuss the healthy and unhealthy ways we use exercise. Kat shares the many benefits exercise has on our physical and mental health, the variety of ways caregivers can fit exercise and movement into their busy lives, how children benefit from their parent's understanding of health and wellness, group exercise, and more. Does exercise look different as we age? Listen to find out. 
Here is a clarification from Kat on the heart rate formula mentioned in the interview: "The formula to figure out your maximum heart rate for exercise is 220-your age.  However, typically if someone is wanting more cardiovascular fitness: 220- age = max HR x 60% & 75% that's when individuals can see cardiovascular benefits from their workouts."

PWS BIPOC Affinity Group

(Please note, this episode was recorded under the name PWS Connect, and we have since changed the name to PWS United.)
We spoke with PWS parents and advocates, Dini Rao and Gennelle Conway, about the growing PWS BIPOC Affinity Group. We discussed the experiences and challenges of people of color in the medical and PWS world, implicit bias, personal prejudice, and systemic racism, and how people can be allies in their own lives and public spaces. We also mention a variety of valuable and informative resources so please be sure to check out the links below! If you are a person of color or raising a person of color in the PWS community and are interested in joining Dini and Gennelle and the growing BIPOC Affinity community, email bipocpws@gmail.com.
Links to Podcasts:
Seeing White from Scene On Radio
Intelligence Squared episodes on Apple
Links to Articles:
Understanding and Addressing Racial Disparities in Healthcare
Reducing Racial Disparities in Healthcare
Implicit Bias and Racial Disparities in Healthcare
Oximeters and skin tone article
The Indispensability of Race in Medicine
Links to Books:
Systemic: How Racism is Making Us Ill by Layal Liverpool
So You Want to Talk About Race by Ijeoma Oluo
 

Edition 104: PWSA | USA Pulse

(Please note, this episode was recorded under the name PWS Connect, and we have since changed the name to PWS United.)
Carrie and Anne, from PWSA | USA's Communication Dept., share the news and resources from PWSA | USA's Pulse newsletter, edition #104. Our Pulse covers upcoming fundraising events and conferences, advocacy highlights and actions, family support resources and offerings, the latest in research, trial opportunities and more. The Pulse newsletter is published digitally every Friday. Future podcast Pulse episodes will air the following Tuesday. 
Links:
Planned Giving Webpage
"Less Than No One" Spotlight
United in Hope Conference
United in Hope Mural
RMC Inaugural Fundraiser
Congressional Letter of Support Blog Post
Military Family Form
Rare Aware Art Share Submission Form
Interdependence Blog Post
Ask Nurse Lynn "BM & GI Concerns" 
Aging research Webinar Recordings
Call for Abstracts
Project ECHO 
Acadia Webinar Recording
TREND Launch Report
Harmony TEMPO Trial Sites
Gastroparesis Article
 

Advocating for Change: A Conversation with Dorothea Lantz

(Please note, this episode was recorded under the name PWS Connect, and we have since changed the name to PWS United.)
In this episode of PWS United, we sit down with Dorothea Lantz, Director of Community Engagement at PWSA | USA, for an insightful discussion about recent and upcoming advocacy efforts. Dorothea offers a recap of the May 2024 D.C. Fly-In and discusses the recent steps taken to advance our congressional requests made during the event. Looking ahead, she outlines exciting initiatives and programs for advocacy in 2025. Dorothea also discusses the crucial steps needed to ensure access to DCCR if it receives FDA approval. The episode concludes with heartwarming reflections on the special mission moments that continue to inspire and drive the community's advocacy work.
Links:
PWSA | USA Advocacy EffortsPWS Military Family Form2024 D.C. Fly-In Recap Latest Update on DCCR  PWSA | USA Advocacy Email: advocacy@pwsausa.org

Back to School: PWSA | USA Special Edition Pulse

(Please note, this episode was recorded under the name PWS Connect, and we have since changed the name to PWS United.)
We want to make sure the PWS community is aware of the multiple resources offered by PWSA | USA to help you and your loved one with PWS have a successful school year. From suggestions to help ease back to school anxiety for both individual and caregiver, tips for IEPs, our School Success Summit and more, this episode, along with the relevant links, supports your family in having a happy, successful, and confident school year. 
Links:
School Success Tool Kit
Donate to PWSA | USA
Join our Pulse Newsletter
Navigating Peer Relationships Blog Post
Anxiety and School Blog Post
School Success Summit Webinar Recordings

PWS Connect Teaser

(Please note, this episode was recorded under the name PWS Connect, and we have since changed the name to PWS United.)
We are thrilled to announce the upcoming launch of PWS United, a brand-new podcast from PWSA | USA, debuting Friday, August 30, 2024! PWS United will be your go-to source for the latest news, research, advocacy, and family support in the Prader-Willi syndrome community. This podcast brings together voices from across the PWS landscape, offering valuable insights and practical advice to empower and support those affected by PWS.
Learn more about Prader-Willi Syndrome and PWSA | USA at www.pwsausa.org