This is Eli

A blog about Eli. A blog about survival – and by that, I mean life!

Today’s the day. Everyone is asking for a handout!

That includes me!

Donate here.

It’s Giving Tuesday!

Here are 5 ways to give:

5waystogive

Sickboy

I discovered a podcast. More specifically, my pal Marquina discovered a podcast. She is only a year older than me –which makes her, what, 29 maybe — and she is a cancer survivor. And she mentioned she was at this camp for adults who have overcome stuff – like cancer – and she met a man named Jeremie. He is 32 years old and has cystic fibrosis. He also has a great podcast called Sickboy he’s put on with his best friends. It’s hilarious, vulgar and inappropriate. In other words, it’s everything a podcast about sick and dying people and destigmatizing illness should be. Seriously, though. Sometimes life gets so absurd, you just have to laugh. Humor is medicine. It’s definitely Jeremie’s medicine. And if he is alive and thriving at 32 with my son’s fatal illness, I’m willing to dose on that.

So you should donate to Jeremie’s podcast. You can even give a small amount a month – like $1 – which is pretty exciting.

Bonus: Canadian accents

Esophageal Cancer Action Network

One in five people diagnosed with esophageal cancer will survive five years.
It’s a depressing statistic, and one I know well. My mom died in October 2010, just one and a half years after her diagnosis with this cancer. Luckily, she got to meet my baby girl Laila. We said goodbye when Laila was just six months old.

We had no idea that acid reflux can cause cancer. It’s something my mom suffered with her whole life, but we never even thought about getting her an upper endoscopy, a procedure that could lead to early detection and be lifesaving. More people should know this, and that’s what ECAN is all about.

You can give once or schedule a recurring donation. Easy like Sunday morning.

Foster Wishes

There are 11,000 foster children in the state of Oklahoma.

They need Santa, too.

Foster Wishes is my favorite charity in the Sooner state. My family adopts a child every year.

There is so much yuck gross commercialism involved in the Christmas season – why not give to a little person who would appreciate a doll or truck more than any little person on this planet? My colleague’s sons are adopted. They had a handful of McDonald’s toys to their name when he took them home – you know, the kind you shovel in the trash when your kids aren’t looking.

If you are local, you can request a Christmas list from a child and drop the toys and goods off at a local spot. Or, you can donate online.

Miracle messages: Because everyone is someone’s somebody

This nonprofit began when its founder took a walk on a San Francisco street at Christmastime and asked every homeless person he met if they might like to record a video message for a relative or loved one. A man named Jeffrey took them up on the offer. His video was posted to Facebook. Within an hour, they’d found his sister, which led to a phone call reunion after 20 years apart. Jeffrey had been listed as missing for 12 years.

There are a variety of ways to get involved, from contributing to a crowdfunding campaign to starting a local chapter. Read more about the org at its website.

Help me be your corporate gadfly, baby!

You didn’t think I’d let Giving Tuesday go by without begging for cash myself, did ya?

It’s true – I’m raising money. I’m raising money in my personal life, and online, to purchase stock in Vertex, the flagship drugmaker that holds the power to save my son’s life and/or bankrupt him and/or his family.

The latest drugs that can help Eli cost more than $250K/year.

Donate here.

If I hold $2,000 worth of Vertex stock for one year, I can propose plans at the annual shareholder meeting in Boston related to areas of corporate governance.

Don’t fall asleep, listen: Shareholders want companies to do well, just like I want Vertex to succeed and thrive. It’s just – the company needs to be accountable. I had this meeting with them in Boston and they weren’t accountable. This is one way to make them more accountable.

I’d also really love it if you, right here, right now, took $1, $10, $25, $50, etc., out of your tin can hidden in the wall, or, your bank account.

Next, put it white envelope and write on that envelope “Vertex shareholder cash.” Or, stick it in your savings account.

Then stay tuned, because I’m going to teach you (and myself) in 2017 to be a corporate gadfly. We are going to form a coalition of shareholders who will look out for the cystic fibrosis community by keeping an eye on the companies producing Eli’s drugs. No one is going to do this for us, don’t kid yourself.

Nearly every patient advocacy group out there is tied up with drug company money. Think about that as you listen to the thundering silence of those “advocacy” groups on our drug costs.

Keep reading this blog. Keep stashing money in your special Vertex boot.

Keep keeping on. Don’t give up.

Processed with VSCO with a6 preset

Eli won’t give up.

Donate here.

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