Message from Ryan Prior: Congressional Packs $10

[Merry]

Ryan Prior reports that 138 Congressional Packs have been ordered so far. Ordering a pack is an easy way to participate in advocacy during Awareness month. For $10.00 Ryan and his all-volunteer team will ship to whichever member of Congress you choose (the site provides a link to check who represents you in in Congress) a dvd of Forgotten Plague with a letter (an email will also be sent). The deadline is May 19th, the day all orders will be shipped.

This is your chance to tell your Congressman about ME/CFS.

Throughout the making of Forgotten Plague, people joined our movement and so often told us that they wanted all members of the U.S. Congress to see the film, to be educated about this disease, and to increase NIH research funding toward finding its cause and cure.

As a limited time offer in conjunction with the May International Awareness Month and the May 25th #MillionsMissing protests, we're offering you the chance to send a Forgotten Plague DVD to your Congressman! At just $10.00, the Forgotten Plague Congressional Pack is easy, fast, and cheap. Our office will do all the work for you, in shipping the DVD and also providing a physical and digital letter to your Senator or Representative, explaining the severity of the disease as well as the solutions our community requires.

We're delighted at the level of engagement we've seen across the nation. So far138 Congressional Packs have been purchased, meaning national leaders from Speaker of the House Paul Ryan to Arizona Senator John McCain will receive DVDs and important education about ME/CFS. With your help we can hit our goal of 175 Congressional Packs by May 19th when our office ships them all out.

We're living in an unprecedented month in ME/CFS history. On May 25th, #MillionsMissing protests will be held in 12 cities across the world, making it the biggest protest day ever. A new petition for NIH funding has 30,000 signatures, making it the biggest petition ever.

And you can join the protest virtually by purchasing your Congressional Packtoday!​

 

[Tina]

Thanks @Merry . Just did it this morning. I also wrote my Senator to thank him for attending a meeting in March with Carol Head. Hopefully we are starting to get somewhere!

 

[Lissa]

Just curious... I plan to do this, but is there a way to determine that we aren't duplicating efforts? So two people in the same state don't send to the same Senator etc? So if someone already sent stuff in my state, I'd choose to chip in and contribute to another state maybe?

 

[Merry]

Just curious... I plan to do this, but is there a way to determine that we aren't duplicating efforts? So two people in the same state don't send to the same Senator etc? So if someone already sent stuff in my state, I'd choose to chip in and contribute to another state maybe?

I've wondered the same things, @Lissa, but I didn't get myself organized to contact Blue Ribbon to ask questions.

 

[Tina]

@Lissa and @Merry , I personally think the more each representative gets the better. Hell, overwhelm them. I think it can only help to get the point across and they will then have extra copies to pass along.

 

[Lissa]

I've wondered the same things, @Lissa, but I didn't get myself organized to contact Blue Ribbon to ask questions.

Yeah I've had a crashy week-- great intentions and a list of to-do's staring back at me... I keep thinking: tomorrow, tomorrow...

 

[Merry]

A Forgotten Plague Facebook post dated May 17 at 9:17 reported that 240 Congressional packs had been purchased. Today, the 19th, is the last day to order.

As to the question about the "problem" of multiple copies being sent to members of Congress, the response from the person who takes care of the Facebook page was:

Our strategy has been shifting to favor multiple DVDs per office. We'd rather have 100 offices receive 5 DVDs than 500 offices receive 1. Multiple DVDs coming in is a creative way we can show a given office that lots of people care about addressing the disease and that they need to be adjusting their priorities to take us into account!

 

[Lissa]

A Forgotten Plague Facebook post dated May 17 at 9:17 reported that 240 Congressional packs had been purchased. Today, the 19th, is the last day to order.

As to the question about the "problem" of multiple copies being sent to members of Congress, the response from the person who takes care of the Facebook page was:

Thanks @Merry !

I bought 3 yesterday and covered my state. Hope they all get multiples!!!!

 

[Tina]

I received the following response from one of my senators. It so happens that I had emailed him the day before we got the request from Ryan Prior so this is in response to my letter, not the DVD. I know it is mostly a form letter , but I did have a DVD mailed to him as well, so....keep ME/CFS in the forefront of your representatives!

My senator was mentioned as one of a small group of representatives who attended a meeting with Carol Head to listen to the concerns of our community.

Dear Mrs. Smith:

Thank you for writing in with your comments. It is good to hear from you, and I appreciate you taking the time to write to me. As a medical doctor and the husband of a breast cancer surgeon, I know firsthand the problems patients face.

I came to Congress to lower health care costs, increase access to high-quality care, and put patients in charge of their health care dollars and decisions. By increasing patients’ control over their health care decisions and lowering the cost of access, we can achieve this goal.
You will be pleased to know that I currently sit on the Senate Committee on Health, Education, Labor, and Pensions. I am working with my colleagues in Congress on step-by-step and fiscally sound reforms to address our nation’s healthcare needs. While I have not made a decision about this issue yet, you can be certain that I will take your thoughts into consideration as I do.
I will continue to represent the views of my state and do so through hearing from constituents like you. Please continue to reach out, either by phone or by email, when you have another question or concern. You can reach my office in Washington DC at 202-224-5824 or submit an email at http://www.cassidy.senate.gov/content/contact-bill.

 

[Merry]

From Forgotten Plague Facebook page May 19 at 11:17 pm:

We're awash in Congressional Packs!
297 Congressional Packs ordered so far. All in all, with the other bulk orders around the world we are packaging 431 DVDs tonight!

 

[Cort]

From Forgotten Plague Facebook page May 19 at 11:17 pm:

Wow - that's impressive!

 

[Merry]

Because of the popularity of this advocacy effort -- 300 Congressional Packs have been ordered so far -- it will now run through May 31st. I started a new thread to announce this extension in the hope that more people will notice.