Running For Research ♥ Prader-Willi Syndrome
A Running Fundraiser Benefiting Research on Prader-Willi Syndrome at the University of Florida
According to the National Institutes for Health, there are currently 20 investigational studies (either ongoing or preparing to enroll participants) that are specifically designed for Prader-Willi Syndrome. These studies are spread throughout the world, in places like the US, Canada, France and Taiwan. The topics being investigated include EDS (excessive daytime sleepiness), hyperphagia, behavior moderation, …
According to research published in the International Journal of Sports Medicine, just 2 months of moderate exercise can alter your gut bacteria profile, specifically those species that affect chronic inflammation. The study monitored the gut bacteria of 2 groups of previously sedentary, elderly women. One group exercised for 8 weeks and the other did not. …
Gross motor skills can be challenging for those with PWS. Infants typically demonstrate hypotonia leading to a delay in the achievement of gross motor milestones. Sitting is usually around 12 months, walking at 24 months. Developmental skills should be closely monitored and Early Intervention should begin as soon as possible. Overeating and obesity may become …
Orthopedic issues in PWS are common. Per the Global PWS Registry, 46% of participants age 2 and older report a spinal deformity, such as scoliosis, kyphosis (rounded/hunch back), or lordosis (sway back). Additional skeletal problems including ‘knock knees’, ‘bow legs’ and hip dysplasia occur at higher frequency in the PWS population compared to the typical …
I want to share this brief news story about ancient human gut bacteria. It seems as if about 38% of the ancient gut microbiome has bacteria in it that no longer exist. Could this bacterial extinction make modern humans more prone to some of the common diseases( heart disease, obesity and diabetes) we suffer from …
Temper outbursts and disruptive behaviors are among the most challenging aspects of PWS, both for the individual with PWS and their family. These behaviors can severely limit the entire family’s ability to do many of the things most of us take for granted, like going to restaurants, or attending family events. Many people with Prader-Willi …
Caregivers of people with Prader-Willi Syndrome often experience compassion fatigue. Caregiver stress is often at its highest when the person with PWS is between 12 and 30 years old and often exceeds that of caregivers for traumatic brain injury and Alzheimer disease. The ‘burden’ of disease is of great interest to the FDA as they …
According to the PWS Global Registry, 50% of participants are near sighted, 40% have strambosis, 29% have astigmatism, and 25% are far sighted. Clementine was born with a strabismus. Strabismus is a condition in which a person’s eyes are not correctly aligned. Often referred to as “lazy eye,” strabismus typically presents itself with one eye …
Individuals with PWS present with speech and language deficits. 88% of Global PWS Registry participants had participated in speech therapy. The speech and language skills of individuals with Prader-Willi syndrome are reported to be below expectations based on intellectual levels. Although great variability exists in the speech and language skills of individuals with Prader-Willi syndrome, …
Excessive daytime sleepiness ( EDS), also called hypersomnia, affects many individuals with PWS. According to the Global PWS Registry, approximately 46% of respondents experience this condition. There are other sleep disorders that frequently occur in our population as well.They are issues like early waking ( 31%), lack of REM sleep ( 9%), Cataplexy ( 9%) …