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Several Dysautonomia International board members were on Capitol Hill earlier this month to secure support for Congressional legislation that will direct the US National Institutes of Health (NIH) to allocate $50M in funding to support POTS research in Fiscal Year 2024. We have interest from several members of Congress, so now we need ALL of our community members in the US to email, tweet and call their Senators and Representatives in Congress, asking them to support this critically important funding. Your voice really makes a difference!
Use the link below to easily email, tweet or call your representatives in Congress. It only takes a minute and this can have a HUGE impact on the lives of millions of people around the world living with POTS!
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Over the past few years, POTS has received less than $2 million a year in federal funding each year, out of the $47 billion annual NIH budget. POTS is the second least funded disease on the NIH's annual spending report (only vulvodynia, another women's health condition, receives less NIH funding). New research suggests over 6 million Americans are suffering from POTS, meaning that NIH is only spending 33 cents per patient on POTS research. Other diseases that impact far fewer Americans are receiving over $100M in research funding per year. Dysautonomia International has been funding more POTS research studies than the federal government, and that's unacceptable given the $47 billion dollar budget available to NIH. We need Congress and NIH to step up and invest in research the POTS community desperately needs to find more effective treatments and cures!
Ask your friends and family to participate too, even if they don't have POTS. The more people who contact Congress on this matter, the better our chances of obtaining this critically important research funding. You can forward this email or share this link: bit.ly/FundPOTS.
While this legislation is specifically about POTS, this legislation will benefit all people with forms of dysautonomia because it will provide additional research funding to support staffing for the autonomic labs that care for all of us. When we study POTS, we're also learning more about the co-morbidities that many people with POTS have, like neurocardiogenic syncope, inappropriate sinus tachycardia, gastroparesis, and Ehlers-Danlos syndrome.
Please consider making a donation to support Dysautonomia International's research, education and advocacy programs at dysautonomiainternational.org/donate.
Thank you for being an advocate! |
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