We are seeking volunteers with some legislative advocacy experience to help champion our grassroots cause. There has yet to be comprehensive policy supporting individuals with Turner Syndrome, and we would like to organize our community efforts to advocate for their needs. The help of volunteers with expertise in the legislative process are needed to help us create a plan of action and engage our community.
1 Bethany Road, Building 1, Suite 5, Hazlet, NJ 07730, US
Turner Syndrome affects 1 in 2,000 females. We can help! The goal of the Turner Syndrome Foundation is to support research initiatives and develop educational programs that will increase professional awareness and enhance medical care of those affected by Turner Syndrome. Early diagnosis and comprehensive treatments over the lifespan will lead to a brighter and healthier future for all young girls and women with Turner Syndrome.
Turner syndrome is a random mutation of chromosomes that occurs spontaneously at the time of conception and affects females. There is an absence of all or part of the second X chromosomes in some or all of the cells in the body. As an advocacy organization, our vision is to increase awareness, education and research for this complex disorder. Statistics show that Turner Syndrome takes the lives of 97% or more female fetuses. Our goal is to provide the 1-3% of survivors, who account to 1 in 2,000 females) with a chance at living a full and productive life while gaining additional knowledge and therapies for improvements. If a child does not exhibit classic TS characteristics, but is short and falling below the curve on the growth chart, has delayed pubertal development, presents verbally gifted, or expresses academic or social challenges, she may have TS. Diagnosis is confirmed with a Karyotype blood test. An endocrinologist will monitor the patient, screen for other conditions and provide specialized medical care, and treatments. Early interventions can promote a positive self-esteem and improved prognosis. 1-3% of Turner Syndrome babies will survive birth 10-20% of all miscarriages are babies lost to Turner Syndrome For every 2,000 females, one will be affected by Turner Syndrome
Advocacy & Human Rights
Health & Medicine
We'll work with your schedule.
This is a Virtual Opportunity, with no fixed address.
January 13, 2021
CSR / Volunteer Coordination
Orientation or Training
This is a flexible opportunity, but we are looking for volunteers interested in a long-term commitment (minimum 3 months) who can help 3-5 hours per week.