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Understanding Self-Advocacy
How We Can Help
A Lifetime of Advocacy
Reimbursement Assistance
Other Resources
Gina Law
Get Involved
Contact Us

Understanding Self-Advocacy
Self-advocacy is the path to obtaining support and services, and having the confidence to ask questions, problem solve, and learn to make decisions without influence or control of others. Knowing your rights and understanding your benefits is integral to creating a path of empowerment and success.

Caregivers and people with disabilities are often at a disadvantage and some of the most powerless members of society. Self-advocacy can provide the tools and experience to take greater control over their own lives.
Many women and families living with Turner syndrome have found that developing personal connections within the community, sharing information about the condition with others, partaking in research opportunities, and contributing to the common good to be rewarding and fulfilling.  Of course, every individual is unique, and you will follow the path that is right for you.

How We Can Help
The Foundation’s resources, webinars and the educational booklet, “A Lifetime of Advocacy: What Individuals and Families Need to Know” authored by Valerie A. Powers Smith, Esquire and Legal Advisor to the Turners Syndrome Foundation, will help you on your journey to access care through a variety of health care service systems; as well as, other federal and state sources that provide primary or additional coverage; and assist you in understanding the future lifetime planning tasks to be undertaken, where appropriate.

With self-determination and a positive attitude, you can learn to be an effective self-advocate. 

“A Lifetime of Advocacy”

Valerie A. Powers Smith of counsel with Slovak, Baron & Empey, LLP has provided families with children and individuals living with Turner Syndrome and other special needs with a lifetime guide on how and when to advocate for services over one’s lifetime.  Many individuals feel uneducated about the disability benefits available; and are often confused how to access the same. This rings true when it comes to the health insurance system and future lifetime planning (such as, estate planning, special needs trusts, and guardianships).

Valerie A. Powers Smith, Esq., maintains her legal practice throughout New Jersey, Pennsylvania, New York and California specializing in the following special needs and disability law subject areas:  health care insurance, Medicaid, Medicare, special needs trust, trust administration, estate planning & administration, guardianships, and accessing federal and state government disability-based benefits.  Valerie can be contacted at Slovak Baron & Empey, LLP at 103 Carnegie Center Blvd.; Ste. 300, Princeton, New Jersey; (609) 955-3393; (609) 520-8731 (f); or
Order a printed copy

Reimbursement Assistance

There are a number of programs available to help people with Turner Syndrome to afford the medical care and drugs they need. Many people don’t realize that they qualify for these assistance programs. 

If you or a loved one has trouble paying for your health care, the Turner Syndrome Foundation recommends that you contact your local health care provider to find out what kind of help is available in your area. Your provider is the best source for up-to-date information on health care coverage programs in your state.

The "A Lifetime of Advocacy" booklet referenced above can be a helpful guide as you begin this process. Pharmaceutical companies generally offer patient assistance programs for the uninsured. See Growth Hormone Assistance Programs.

Other Resources

Insurance and Other Assistance Programs - Visit TSF Patient Resources


Provides health care coverage for people with long-term disabilities.
Phone: 1-800-MEDICARE  Web site:

Social Security Disability Insurance (SSDI) 
Provides income to people who are no longer able to work because of a disability; benefits are based on a person’s work history. People who receive SSDI are eligible for Medicare after 2 years.
Phone: 1-800-772-1213 Web site:

State Children’s Health Insurance Program (SCHIP)
Provides health care coverage to uninsured children in families with incomes that are too high to qualify for Medicaid.
Phone: 1-877-KIDS-NOW (1-877-543-766) Web site:

Supplemental Security Income (SSI)
- Provides a monthly stipend to people with disabilities (and low-income Americans age 65 and older) to help meet basic needs for food, shelter and clothing. Individuals who receive SSI are often eligible for Medicaid Phone: 1-800-772-1213 Web site:

Gina Law

Washington, Wed., May 21 2008 — The President George W. Bush signed into law the Genetic Information Nondiscrimination Act (GINA) that will protect Americans against discrimination based on their genetic information when it comes to health insurance and employment. The bill had passed the Senate unanimously and the House by a vote of 414 to 1. The long-awaited measure, which has been debated in Congress for 13 years, will pave the way for people to take full advantage of the promise of personalized medicine without fear of discrimination.
The US Dept of Health and Human Services "GINA" The Genetic Information Nondiscrimination Act of 2008" pdf for Researchers and Healthcare Professionals

Get Involved
You CAN make a difference. Join the Turner Syndrome advocacy movement.  There are so many ways you can help.

Volunteer: The Turner Syndrome Foundation encourages patients to obtain medical care as defined in the clinical care guidelines. As an advocacy organization we realize gaps exist in legislation and insurance coverage from state-to-state. Advocates are needed in all 50 states. If you are interested in volunteering withTurner Syndrome Foundation, you may consider to become a TSF volunteer!

Share Your Story
Write a letter or call your local representatives
Join us in Washington
Support the efforts
Contact Us 

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