PWS Tips
Tip of the Week: PWS Awareness Month (Week 1)
In honor of Prader-Willi Syndrome Awareness Month, we’re sharing a “Tip of the Day” on social media throughout the month of May. Here are this week’s tips (May 1-3): · Individuals diagnosed with PWS can have social, medical, and learning challenges. But never forget that the list of what is good about them is far…
Read MoreTip of the Week: May is PWS Awareness Month
Next week we begin an entire month dedicated to Prader-Willi syndrome awareness. We will be posting daily tips on social media and a weekly compilation of tips on the Latham “Tip of the Week” blog every Friday in May. We’ll also share some of the activities on campus and in our Adult Program celebrating our…
Read MoreTip of the Week: Coping with behaviors and finding support: A Bright Future Conference
I think back to my first Prader-Willi syndrome conferences and remember how much I was embraced by the community and how warmly I was welcomed into this small but mighty group of staff, families, and doctors. The support that I received as a new person stepping into this confusing and sometimes frightening syndrome is why…
Read MoreTip of the week: Low muscle tone
Low muscle tone impacts many different aspects of the life of the person with PWS. The obvious impact is difficulty maintaining movement for long periods of time without experiencing fatigue. Less obviously it can impact body functions such as swallowing, respirations and bowel elimination. Having a primary care physician and other medical professionals familiar with…
Read MoreTip of the week: Speaking with the Experts: Elizabeth Roof, M.A., to present at June PWS Conference
This week’s PWS TIP focuses on utilizing resources in our community. It is important that we recognize and communicate with experts who can be helpful for professionals supporting individuals with Prader-Willi (such as staff at Latham Centers) and helpful for parents, guardians, and caregivers. On June 1st, 2019, Elizabeth Roof will join Latham Centers and…
Read MoreTip of the Week: Invitation to April 9th PATH for PWS Study Webinar
For our Latham friends near and far with a loved one diagnosed with Prader-Willi syndrome, I’d like to remind you that participants are needed for a new study, PATH for PWS: Paving the way for Advances in Treatments and Health for PWS, that will help us better understand serious medical events in PWS. A short 30 to…
Read MoreCreating a calming space
Individuals with Prader-Willi syndrome can often become overwhelmed or overstimulated, requiring a space where they can go to regroup. Creating a safe space – a sensory calming environment – can help to avoid outbursts when the environment becomes too stimulating. These calming spaces can be done anywhere in the home as long as they are…
Read MoreTip of the Week: Path for PWS study
Latham Centers is thrilled to be working with the FPWR in the Path for PWS study. We need parents’ input for this exciting study that will give us vital information on our kids with PWS and their future treatment. Additional information follows. Please consider participating! PATH for PWS is a natural history study investigating serious medical events that…
Read MoreTip of the week: Staying Involved – Prader-Willi Syndrome: A Bright Future conference invitation
As caregivers of someone with PWS, it is important to stay involved in our community. One parent who spoke about his son’s successful transition to Latham Centers told us, “My son and I became more involved in…attend[ing] conferences. Here, not only did I learn, but my son did as well. He learned that there were others…
Read MoreTip of the Week: Planned ignoring
Planned ignoring is an effective skill to use when you are working with someone who acts inappropriately to gain attention. The key to planned ignoring is to be certain that the behavior will not cause harm to the person or persons around them before utilizing this tool. Typically, we see a person seeking attention through…
Read More