Have you seen the email campaign to get US Congressional funding for POTS?

[Guest KiminOrlando]

Not sure if this topic is allowed here, so remove it if it isn't. 

I was on social media and saw a link which took me to a form that automatically sent an email to my US Senators and Representative stating that I am their constituent, I have POTS, and I am asking that they include specific wording in a specific bill to allocate a specific dollar amount earmarked for POTS research. There was also a link to send to friends and family to send to their Representatives. Is this something that this group has reviewed? Is it something we should cross promote? It was from Dysautonomia International. I'm not going to post the link because I'm pretty sure that isn't allowed. 

 

***UPDATE*** Evidently they just added an ICD10 diagnostic code for POTS effective 10/1/22. It is supposed to be G90.A. If this is true, having an actual diagnosis code will change things considerably. Also, my email generated an auto-response from my 2 Senators, so they got it. 

Edited October 13, 2022 by KiminOrlando
Additional info

[MTRJ75]

I got this e-mail from DI, sent it to my 3 reps. 

[edriscoll]

@KiminOrlando Thanks so much for passing on the news of the diagnostic code.  We posted it to social media and on our home page but I think I'll post it to the forum too so everyone is aware.  Thanks so much for sharing. 

As far as the email campaign, this is a part of the ongoing efforts began by the NIH in 2017 to promote POTS research.  If you could please email the link to the form for Senators and Representatives directly to me at ellen.driscoll@dinet.org  I would greatly appreciate it.  I'd like to take a look before posting.  Thanks again for your help. 

[DanteMccoy]

Even though this thread is a couple of years old, the initiative for POTS research funding is timeless. It's heartwarming to see the dedication of individuals like you who have been actively involved in raising awareness and advocating for specific bills.The importance of such campaigns continues. If there are any updates or new developments in this area, it would be fantastic to hear about them.And, as always, when engaging in any online activities, including advocacy campaigns, ensuring the legitimacy of emails is essential. Tools like https://mailtester.ninja can be helpful for that.