Statements

Mission

The mission of the Tennessee Prader-Willi Association is to improve the lives of everyone affected by Prader-Willi syndrome (PWS) through support, awareness, education, advocacy, and research.

Background

Prader-Willi syndrome is a rare genetic disorder that affects 1/10,000 individuals. It is the most common cause of genetic obesity. Infants lack interest in eating and have low muscle tone. Developmental delays are common. Beginning in childhood, affected individuals develop an insatiable appetite, which leads to chronic overeating (hyperphagia) and obesity. Left untreated without environmental modifications, complications of obesity develop commonly including type 2 diabetes mellitus. Dr. Jessica Duis and the researchers at the Monroe Carell Jr. Children's Hospital at Vanderbilt are working with both the Prader-Willi Syndrome Association USA and the Foundation for Prader-Willi Research to help support families and research to find a treatment and possible cure. Dr. Duis runs a multidisciplinary clinic that aims to provide up-to- date clinical care and bring new therapies to individuals with Prader-Willi syndrome and their families.

Impact

2017 Accomplishments:Raised $3200 with an on-line fundraising campaign for a walk/cookout in Nashville on Oct. 28. Started a new fund ($1,000) to build/purchase and support a community home for adults with PWS who live in Tennessee.Provided money to needy families who had extenuating circumstances in 2018 in order to take care of their child with PWS.Raised awareness of Prader-Willi Syndrome in Tennessee via fundraising, our website, emails, fliers, radio stations, and our Facebook page.Educated pediatric & medical personnel about PWS.2018 Goals:Raise money to build/purchase and support a community home for adults in Tennessee with PWS. Raise more awareness of PWS in Tennessee via a 3K or 5K walk/run. Advertise on local radio & TV stations, websites, and Facebook pages.Provide financial support to needy families for travel to the new PWS Clinic at Vanderbilt and/or specialists/hospitals in other states to treat their child with a life-threatening situation due to complications of PWS. Donate money to Vanderbilt Hospital for PWS research.Educate our legislators about PWS and the need for more services (i.e. homes for adults with PWS).Educate our schools about PWS.Hold at least one Family Day for PWS Families (all expenses paid by the Chapter).Hold a PWS Conference (with speakers) for our families this year at Vanderbilt (all expenses paid by the Chapter).Hold one support group meeting this year for our families in East TN, Middle TN, and West TN.

Needs

Prader-Willi Syndrome Association - Tennessee Chapter works to spread awareness of the syndrome and its standard of care, as there is no treatment. We need to provide access to medical care, information and resources via transportation assistance to medical examinations; webinars and access to the national biannual conference for education and access to clinical trials, documentation and resources specific to the families and individuals living with Prader-Willi Syndrome.

Board Chair Statement

Much like our previous President, I have been involved with the Tennessee PWS Chapter since October 2012 and have met some really great families in this journey called "PWS". Our family has attended some awesome Family Days with other families throughout Tennessee. It's so nice to have others who understand what you're going through on a daily basis and to encourage each other in our struggles and I feel a sense of accomplishment when a member of the general public responds to my awareness efforts with "Prader-Willi Syndrome, I've heard of that!" - Sonja Jack

Service Categories
Primary Category:	Diseases, Disorders & Medical Disciplines  - Birth Defects & Genetic Diseases
Secondary Category:	Human Services  - Group Homes
Tertiary Category:	Education  - Parent & Teacher Groups

Areas Served

TN