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Meet with Kwon 201808xx 300x300Erin and Lee-Anne Du Plooy and I met with Kwon Atlas  from Senator Bennet’s office last Tuesday, Aug 7. to discuss SR508.  We understood that Sen. Bennet objected to co-sponsoring SR 508 because it is a single-disease issue.

MEAction had prepared some great information for us to counteract this.  Detailed charts explaining mathematically how ME is the most underfunded of all diseases in the NIH portfolio compared to disease burden, and how the Senate has recently singled out Lyme Disease for attention , provided examples from longer ago, like AIDS, where patient activism called Congress to act.

Also, both our senators supported legislation for people suffering from rare diseases.  Since ME is so very common, I was a bit disappointed to have to be at this point with both our senators, but we presented the best case, along with Lee-Anne’s personal story to keep a face and name in front of all the statistics.

We’ll be following up soon with Bennet’s office and will probably have a calling/email push along with that.  A similar meeting with our contact in Gardner’s office is in the works.

Senate Resolution 508 – 1/10 of the way !

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SIGNS  of PROGRESS!

 

Yesterday (June 27, 2018) two additional Senators signed on to cosponsor Senate Resolution 508 in support of ME research! Rob Portman, Republican of Ohio was no doubt encouraged by his colleague Sherrod Brown who signed on as a Cosponsor a few weeks ago. Also Cory Booker, Democrat of New Jersey, a great supporter of #pwme, has been added to the list.

That makes 10 total Cosponsors. Only 90 more to go!

Don’t you think that Colorado Senators Cory Gardner and Michael Bennet should be the next to sign on ? Continue reading