Turner Syndrome Foundation
Advocacy takes many forms, from standing up for those experiencing discrimination to raising awareness of a global cause. The most effective advocacy measures are those that create sustained change via the laws that govern access to services and care. Legislative advocacy plays a significant role in non-profit organizations like the Turner Syndrome Foundation (TSF), whose mission it is to improve the lives of those impacted by Turner Syndrome (TS) through awareness, advocacy, education, and research..
About Legislative Advocacy
The legislative arm of government is responsible for creating and amending laws that impact every aspect of our lives. Legislative activities can feel rather distant from our day-to-day lives, but the research, discussion, debate, and alliances that unfold in the legislature directly impact the lives of every citizen within its reach. An advocate champions a cause, and a legislative advocate champions that cause to the elected officials who have the power to provide support in the most powerful and widespread way available – by changing laws.
Meet TSF's New Legislative Advocacy Coordinator
Catherine Melman-Kenny recently joined the TSF team as our champion of TSF causes, assuming the role of Legislative Advocacy Coordinator. Her experience as a lead debater, researcher, and writer have prepared her to communicate our goals to legislative leaders and to represent TSF on a national scale. Rallying support and organizing leadership for nationwide advocacy ensures TSF advocacy efforts reach the greatest number of those affected by TS in all 50 states.
Catherine shares, “My goals for my work here include expanding legislative and public awareness of TS and advocating for legislation that will increase necessary aid, awareness, and accommodations for members of the TS community.”
"All advocacy is, at its core, an exercise in empathy."
TSF's Legislative Advocacy Goals
Legislative Advocacy Working Group
TSF’s Legislative Advocacy Working Group is a diverse mix of 10 individuals passionate about raising awareness of TS. Some have TS themselves, while others partner with and support the TS community and TSF’s legislative advocacy efforts. Those members living with TS, including Catherine herself, share their experiences and perspectives with the group. All are passionate about increasing awareness of TS and helping individuals with TS access the resources they need.
Effective legislative advocacy requires many hands. It is a complex effort that combines skills in research and communication, finding and revealing shared interests, and building relationships, all while navigating a complex political environment. To join the Legislative Affairs Working Group, click here.
National Awareness for TS
One constant goal is to promote national awareness of TS by having February declared National Turner Syndrome Awareness Month. National awareness is very important, as it encourages medical professionals, legislators, teachers, and the general public to become aware of how they can best help people with TS in their community. National awareness facilitates more frequent fundraising and awareness events, and equips service providers and community supporters with needed resources to adequately help those with TS.
This campaign means asking Congressional representatives to draft a resolution to identify February as Turner Syndrome Awareness Month. We launched our campaign for national awareness with emails to our representatives to begin the conversation and will follow up with phone calls and in-person meetings to share our goals for the TS community. Building relationships with our representatives and their staff positions us well to achieve official national awareness soon.
Improved Access to Estrogen
Though estrogen is legal across the country, cost and inadequate insurance coverage may make it very difficult to access. Insurance constraints can make necessary hormone therapy more difficult for girls and women with TS to access than it should be.
Even though estrogen is used as hormone replacement and not a contraceptive for patients with TS, the medications are the same. The National Conference of State Legislatures reports that only 28 states have laws which require insurance coverage of contraceptives. Lower-income individuals and families, in particular, are affected by this lack of coverage, as their necessary estrogen therapy may be too costly for them to afford. To learn more about insurance assistance resources, click here.
Petition for Patient Care
One immediate goal is to obtain at least 2,000 signatures on the 2022 Petition for Patient Care to increase awareness of TS. With enough signatures, this petition will be sent to legislators. The petition invites those with an interest to “implement policy to improve accommodations and care for those with Turner Syndrome.” Awareness of TS increases the likelihood of earlier diagnosis, which means improved care and quality of life. Read more about the importance of newborn screening in our recent blog post.
Become a Legislative Advocate for TSF!
We are always looking to expand our group, as we need all the help we can get to make change happen! Our mission would be much more easily completed if we had volunteers from every state working with us. If you are interested in research, legislative advocacy, or communicating with Congressional representatives about the importance of national awareness, please join our group, which meets every Thursday at 8 p.m. EST.
Written by Catherine Melman-Kenny, TSF Legislative Advocacy Coordinator, and Karen Green, TSF volunteer blog writer. Edited and designed by Susan Herman, TSF Blog Coordinator.
© Turner Syndrome Foundation, 2023
