Letter Writing Campaign

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My good friend, Hannah, has started this letter writing campaign. Here is her appeal:

Christmas 2012

Dear Friends,

Funding for the Attendant Care Waiver/Act 150 Program has essentially been frozen in Pennsylvania due to the lack of movement on the federal budget. Act 150 provides funding for supports and services that allow people with physical disabilities to continue to live at home with their families. This funding is vital for the well-being of Aaron and his family.

Please consider using the attached letter as a starting place to request your legislator take action to make the funding accessible again.

Your letter can be sent any time, but please be sure to send it the minute the federal budget is announced (even if you already sent it). We have it on good record that legislators aren’t going to consider any funding requests before the budget is announced, but the faster we act once it has been, the better.

In the meantime, you can call your legislators or email them directly from their legislative webpage to let them know you are concerned about the funding for Act 150 (make sure you clarify you are referring to the Attendant Care Waiver/Act 150 Program, as Act 150 can differ from year-to-year) and then follow up with the written letter once the budget passes.

You can also make an appointment with Gwen and Aaron’s legislators (Sue Helm and Jeff Piccola, though you’ll likely meet with their staff) - in their district office – and meet with them for a pre-session informational meeting. Let them know that you will be fighting for funding and you want them to understand why you are going to be sending letters and making phone calls come budget time.

Attached is a letter to use or you can personalize one, using this as a starting place. I am also attaching a photo, should you choose to include one in your letter. For more information on Act 150, visit http://goo.gl/gzXhB

To find your legislators' contact information, visit http://goo.gl/3lqe4

Thank you for taking the time to address this issue. Our attention to this could make a big difference in Aaron's quality of life, as well as that of his family. Please feel free to email me if you have questions.


Summer 2012

2011 St. Patrick's Day Dad and kids

Legislative letter for Aaron - Act 150(1).doc28 KB
Christmas Family Photo.jpg581.77 KB
Aaron and kids.jpg33.14 KB
Summer Family Photo.jpg348.39 KB


aaron's picture

there is no phantom hand. end

there is no phantom hand. end of story. sorry to disappoint.

Anonymous's picture

Fake composite photoshopped photos.

Aaron, there looks to be an extra hand in the christmas tree photo above. Dave Pizer explained to me that the picture was a composite. Is that true?

Here's Dave's message to me on that point.

Re: extra hand in pictureWednesday, February 20, 2013 1:50 AM
From: This sender is DomainKeys verified"David Pizer" Add sender to Contacts
To: "Rick Potvin"
They had a picture of Aaron and only the youngest daughter that was taken before Aaron was put full time on the breathing machine from before last Christmas. Now he is worse off and can't get up to take a new picture with his whole family.

We wanted a picture of him with the whole family (him + wife and both daughters).

So they took a picture of wife Gwen and the other daughter standing as close to the tree like when they had the picture of him taken and they combined it into one picture showing all four of them.

Rick - There is no way Aaron could defraud us as we do not give any of the money to him. After he is legally dead and his body has been cryopreserved then we will pay CI.

aaron's picture

Rick, I can assure you that

Rick, I can assure you that the photo is not a composite; if I were going to do that, I would have put us on the moon or something fun like that. I was curious about the photo after your comment, so I went back and checked the original, enlarged it to see how my daughter's hand was positioned in a way to suggest what you saw, and her left hand has a palm facing forward, while her right hand is covered by her fancy sleeve of a slightly too large shirt handed down from her older cousin. Our eyes can play tricks, so no hard feelings.

I am not trying to defraud anyone. As far as David's response, given the state of my health, I suspect he simply thought that I had made a composite after being asked for a relatively recent family photo. After all, although I am not quite yet at that stage, many patients with advanced ALS have only an hour or less a day to cram everything into their waking life.

The Society for Venturism has chosen me as the recipient of its charity for this year, to hopefully offer me cryonic preservation when the time comes. And this month, Longecity, an excellent forum for the discussion of issues related to extending the lifespan of humans, has offered up a matching grant of up to a thousand dollars to help out! So help out! Please.