Team Sophie

Erin Rupolo is raising money for FNIH

Participants: Williams Syndrome Awareness Month

“Williams Syndrome Awareness Month”

on 5 May 2021

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The Foundation for the National Institutes of Health (FNIH) procures funding and manages alliances with public and private institutions in support of the mission of the National Institutes of Health (NIH), the premier medical research agency. The FNIH and its partners successfully generate and implement new research models that lower the cost and accelerate the progress of biomedical research. Because of our daily exposure to scientists, business leaders, donors and physicians- and advocates who represent patients- the FNIH is at the confluence of new ideas. This affords us a unique perspective, one that empowers us to envision critical biomedical research needs. The FNIH, a preeminent leader in the design and execution of public-private partnerships, has created hundreds of cross-discipline partnerships whose initiatives have generated new ideas, overcome obstacles and achieved groundbreaking research results. We supports a wide range of biomedical projects. A number of FNIH-developed models remain gold standards for how academic, industry and government partners confront serious diseases. Groundbreaking initiatives managed by or involving the FNIH include the Alzheimers Disease Neuroimaging Initiative (ADNI), the Biomarkers Consortium and the Accelerating Medicines Partnership (AMP). The FNIH also supports the next generation of great medical scientists through the NIH Medical Research Scholars Program. By donating to the FNIH, you support the mission of the NIH.

Story

Team Sophie!

This year in honor of Williams Syndrome Awareness our family has chosen to support the Williams syndrome community by creating a team page that will donate directly to the current Williams syndrome study at the National Institutes of Health (NIH). Two very well known and pretty amazing doctors who are experts in Williams syndrome; Dr. Kozel (Geneticist/pediatrician) and Dr. Levine (cardiologist) head this study at NIH. The study focuses on the following *critical* areas that are specific to WS:

● Natural history of blood vessel disease;

● How to minimize the risk of sudden death;

● Blood vessel disease and aging;

● Genetic changes and blood vessel disease severity;

● Impact of blood vessel changes on development and other body systems.

Participating in this study means Sophie is able to receive a full medical scan from head to toe (and some) which not only gives us peace of mind but is also helping collect life saving research. Sophie has been participating since the study started back in 2016 and we are looking forward to our upcoming visit in July.

We hope you will consider helping us reach our goal by making a donation in honor of Sophie!! Together we can do more than we ever could alone, help us fund lifesaving critical research!  Thank you for being a part of WS Awareness Month 2021! 

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Donation summary

Total
US$903.00
Online
US$903.00
Offline
US$0.00

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