2017 Rally for Medical Research
Turner Syndrome Foundation representatives attended the 2017 Rally for Medical Research this September in Washington, DC. The meetings and reception were held in the Grand Hyatt Hotel and on Capitol Hill. Aligning with advocacy groups and House and Senate legislators, TS advocates were there to raise awareness of this widely unknown disorder that affects girls from birth.
The Rally for Medical Research group had over 350 participants visiting with more than 250 House and Senate offices to push for robust, sustained, and predictable funding increases for the National Institutes of Health (NIH). We all know that these increases are vital if we are to accelerate efforts to improve the outlook and quality of life and find cures for people all across our nation who are suffering from hundreds of diseases and health conditions.
Unified support for federal funding for medical research is critical to the health and well-being of our citizens and for the economic security and global leadership of the United States. In fiscal years 2016 and 2017, Congress provided the first significant increases in funding for the NIH in more than a decade. Now is the time to build on that momentum by urging Congress to continue making medical research a national priority by providing robust, sustained, and predictable funding increases for the NIH in 2018 and beyond.
Turner Syndrome Foundation's efforts directly benefit those affected by Turner Syndrome through support for the prestigious research community. The starting point for this advocacy initially began with Genetics Day on the Hill in 2011. Medical advisors of the Turner Syndrome Foundation expressed an urgent plea for advocacy to support Turner research through NIH funding. TSF representatives converged in a unified voice and were met with promising intrigue and support from legislators. This advocacy effort resulted in 2013 legislation declaring February as Turner Syndrome Awareness Month in New Jersey. In conjunction with this legislative advocacy, TSF helped to organize the first Turner Syndrome specialized center of care at Saint Joseph's Hospital. This was the first of many new relationships and stewardship for a greater access to care and support for the people we serve.
A tremendous task lies before us to achieve advocacy for researchers and medical care in regions of every state, and for the nation as a whole. This effort must be expansive and wholly supported.
Advocacy never ceases -Your voice can influence a new philanthropy to make this achievement possible. People and significant financial support are essential for this cause to advance.
We invite you to partner with Turner Syndrome FOUNDATION.
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Advocates are called upon to join this effort to support medical research and awareness activities.
What a stimulating and learning experience I shared with Turner Syndrome foundation in DC. It was wonderful to speak to and share with all of the people dedicated to their causes who were also advocating for funding and sharing their experiences. Their dogged perseverance, shared personal stories, research, and the many times they have been to these rallies and meetings was, indeed, enlightening.
My biggest take-away was that Turner Syndrome is not recognized or known by any of the researchers, activists, or legislators we had met at the rally. This was a startling realization of the work ahead of us. Indeed, we, as a Foundation, must bring the awareness and medical care needed to all, especially research, with our determination to make all those in DC aware of Turner Syndrome, I know we will do so.
These girls will suffer a lifetime of symptoms, but with proper help and awareness of this condition, they can look forward to a future we all take for granted.
Grand Mother to Olivia (15), a young child with Turner Syndrome still fighting and trying to overcome related issues