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Legislative Advocacy Working Group
ORGANIZATION: Turner Syndrome Foundation
Please visit the new page to apply.
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DONATE TO THIS
ORGANIZATION -
39 people are interested
We are seeking individuals and small groups with legislative advocacy experience to help champion our grassroots cause and be a part of the legislative advocacy working committee. 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 or who are seeking experience in the field of advocacy are needed to help us create a plan of action and engage our community.
The engagement will meet your interest and skillset and may include any of the following:
- Identify stakeholders
- Research bills
- Reaching out to sponsors and co-sponsors of bills
- Legislative outreach
- Communications; phone, email, letter writing, blog, zoom
- Mentoring & coaching new advocates
- Influence supporters to sign onto the awareness petition
- Political Science
- Public Policy
- Law
- Sociology
You can learn more about TSF legislative advocacy, first by signing the petition here: https://turnersyndromefoundation.org/volunteer_take_action/awareness/turner-syndrome-petition/
Submitting your volunteer application here: https://tsfusa.salsalabs.org/advocacyworkinggroup
2 More opportunities with Turner Syndrome Foundation
Opportunities
About Turner Syndrome Foundation
Location:
1 Bethany Road, Building 1, Suite 5, Hazlet, NJ 07730, US
Mission Statement
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.
Description
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
CAUSE AREAS
WHEN
WHERE
This is a Virtual Opportunity with no fixed address.
DATE POSTED
October 24, 2023
SKILLS
- Advocacy
- Public Advocacy
- Legal (General)
- Community Outreach
- Public Speaking
GOOD FOR
N/A
REQUIREMENTS
- 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.
- Great on phone, writing, email and willing to meet with legislators and speak with others to grow a community of support.