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Sunday, October 18, 2015

Black Friday- the ugliest day of the year

Mari and I are working on JJB's Holiday fundraising campaign's.  They center around Holiday spending.  Planning JJB's Holiday fundraising campaign's took me back to my former life as a retailer.

You’ve all heard of Black Friday-  the shopping spree the day after Thanksgiving.  The new era of internet shopping brought us- Cyber Monday.  Giving Tuesday, takes place on December 1st.  Giving a gift without receiving something in return.  Novel concept?

Coming from a seasoned now retired retailer, Black Friday is just about one of the ugliest days of the year.  I’m going to share with you a few disturbing retail stories.  Hopefully my experiences in retail will encourage you to stay home on Black Friday.  Kick back and enjoy life with your children and grandchildren feast on all those delicious leftovers.  You can thank me for this advice on Giving Tuesday.

My first job out of college was as a department store manager.  All the employees had to choose between working on Black Friday or Christmas eve, it was a no win decision trying to decide between the lesser of two evils.

On Black Friday, we had to be at the store by 6:00 am and many of us ended up working until close.  Thrifty shoppers drooling over Black Friday sales- wake-up at the crack of dawn and drive to the crowded mall.  With their coupon books and ads in hand, customers anxiously waited for us to unlock the doors.  Only to be disappointed that the item they wanted was sold out. They had been outsmarted by the customers who put the item on pre-sell.

Many shoppers are ready for a fight. Arguing on the fine print on their coupon. Of course they want the high-end jeans at the discounted price, not the pair featured in the ad.  They hold up the line, the associate has to call a manager to come manage the dispute.  I show up, all smiles which really annoys the customer.  She yells at me to stop smiling at her, accusing me of laughing at her.  She makes the biggest scene she can in front of all the other tired and angry customers.  Hoping that I’ll break and give her the discount on the item that is not on sale. I stand my ground, she doesn't realize that I do have it out for her, I left family and leftovers to come serve her.  She curses at me, throwing her item aside and swearing she’ll never shop here again.  I should be so lucky.  Unfazed I walk to the register and politely say, with a smile on my face, “Who’s next?”

I wish you all knew how seemingly normal people, turn to lunatics when they want something they can’t have at the price they want to pay.  People this isn’t a stoop sale, you can’t barter here.

Some customers are major jerks and others are jerk offs.  Retail is a nasty industry.... If you continue reading, be forewarned.

One very black, Black Friday I got caught up helping a gentlemen, with finding the right cut and size of Levis.  I was frantically running back and forth to the fitting room grabbing him styles.  Stopping and ringing people up, helping others as I went along.  My Levi customer kept asking me for more and more styles.  Which didn’t surprise me, some people are obsessed with just the right cut.  I was however surprised and mortified by the present he left me in the fitting room.  I picked up the pile of his discarded jeans and felt something warm and sticky between my fingers. The Levi guy was a 'jerk off'.

The kids and young adult department's are the worst to manage,  the coveted departments are held for the senior managers.  Being fresh out of college I was stuck managing the young men’s and the children’s departments.   Word to the wise don’t ever sit on the ground in a fitting room and try not to touch anything.  The fitting rooms are treated like port-a-potties, but with no toilet, only a pile of clothes to relieve oneself on.  No garbage cans for used sanitary napkins and why use toilet paper when the sleeve of the shirt that you’re not going to buy will work? 

I bet, Cyber Monday is looking better and better to you! Or Giving Tuesday- save yourself the trouble and just send a check to your favorite charity in the name of your cousin.  FYI we’ll send both you and your cousin a lovely card, thanking you for the wonderful gift.

If you do shop Cyber Monday and use Amazon, please consider using Join AMAZON smile for JJB and choose Jonah’s Just Begun as your charity.  JJB receives a small % of the proceeds every time you shop, which adds up! I realize many people despise amazon for their bad labor practices, but I bet an amazon employee never had to pick up a pile of clothes that were saturated and dripping with urine.

Jonah is writing his Christmas list
He wants an: Iphone, Wii and a new IPad.  I have become a huge cynic of the Ipads. For Jonah, screen time of any kind turns him into a junkie.  He will say anything to try and convince you to let him watch a movie or play on the Iphone. He’ll promise to do his homework, which he’ll then rush through, hardly paying any attention at all, barely listening to instructions.  Then scream, “I’m done, now can I watch a movie?” 

Last week we checked Jonah into the hospital for an EEG 
Some kids take two days to capture an episode, some take two weeks.  I was pretty confident that we’d get an incident from Jonah in the first day.  However, I was prepared to stay for a few days.  I took an entire suitcase of board games, books and cool new games.  Jeremy and myself, along with Jonah’s: therapist, Psychiatrist and Neurologist were all concerned that Jonah might be having absence seizures (petit mal).  Jonah does this thing where he, ‘checks out.’ It looks like he’s engrossed in a daydream, but he doesn’t respond and he does it off and on all day long. Picking at his fingers and sucking on his lips.

We arrived at the hospital and hooked Jonah up with the leeds about 30 wires glued to his head, which didn’t go over well, but we got it done.  We were both happy to have a roommate to play with.  The boys played one game together, then Jonah asked to watch a movie, the boy pulled out his Ipad. Later we went to the playroom, I was relieved to be getting away from the two tv’s and the Ipad.

Jonah in his ceremonial headdress, performing "We're not going to Take it, No we're not going to take it anymore!" - Twisted Sister.
Once in the playroom the children on an extended stay at the hospital, pulled out a Wii, they knew all the ins and outs of our floor.  I wanted to cry, No not another video game!  Jonah of course had a major meltdown when it stopped working.  The aids and I were able to drag him away after ten minutes of trying to reason with him.  We sat down and played a cool new board game.  Not long after,  Jonah ‘checked out’ and was unresponsive to myself and the aids. He was  having one of his typical episode that we were concerned about. I clicked the button to notify the staff.

Please, no electronics for Jonah on Cyber Monday.

As a child, what made you the happiest during the Holidays?
Was it a toy, family time, a video game or something else?  My favorite Holiday memories were first eating myself silly then playing board games with my siblings, cousins and neighbor kids.   Better yet porker with my grandparents and aunts and uncles.

Then the Atari 5200 came out and the playing of board and card games came to a screeching halt. Instead my siblings, cousins and I fought over who’s turn it was to play on the Atari next.

Practically everyday I say to Jonah, “Why do I buy you all these wonderful toys, when all you want to do is watch tv and play games on my phone?”

I remember my Mom asking me the same thing whenever I was engrossed in a video game.  I thought to myself I don't know... why do you?  Seriously, who needs toys when you have Space Invaders?!

Jonah will be spending Thanksgiving with his dad and grandparents.  He'll have lots of face time with his cousins too.  The only thing he loves more then an Ipad is his cousins. I'll be with my other family in Switzerland on Thanksgiving, for an International Sanfilippo conference. I'm really looking forward to seeing all of my families. We have a lot to catch up on, we'll mostly be talking about our kids and how we need more money to save their lives.  You know,  typical family conversation.  I'll tell them how Jonah just lost a tooth.  He came home from school and said his tooth was wiggly.  He asked me to pull it out.  I think it's cool that Jonah lets me pull out his loose teeth.  Anyhow, he put his tooth in an envelope and wrote on the front;  Dear, tooth fairy,  My tooth is in here.  He put it under his pillow.  That evening, Jonah yells from his room at 3:00am.  "Mom the TOOTH FAIRY didn't come yet!!!" lol

Back to Holiday fundraisers.
Last Year we jumped on the Crowdrise Giving challenge late and missed out on some big bucks.  This year we’re trying to get ahead of the game.  We have started to build our campaign page on Crowdrise.  The theme: "This will be our year-And we've Only Just Begun"  It's the title of one of my favorite songs.  Fundraising will go live on November 24th and will run through January 7th.  Supporters and other Sanfilippo families have begun to set up their team member pages, you can too.  We're hoping that our supporters will create a team profile, then share it with all of their friends and family. The more teams involved, the more money and awareness we can raise. 

Start here
 This will be our year-We've Only Just Begun
A tip... you can put a link on your Holiday greeting cards to your fundraising page. 

There will be several chances for JJB to be entered to win cash prizes from Crowdrise (we won 1 of them last year)  To prepare yourself for what’s to come, check out what the challenges looked like last year here. https://www.crowdrise.com/GivingTowerChallenge2014

Last Years Cash prizes for the top fundraisers broke down like this:
- The team that raises the most during the Challenge wins a $100,000 donation
- Second place gets $50,000
- Third gets $25,000
- Fourth gets $10,000

I was absolutely thrilled that the JM foundation won the 2nd place in the Holiday Challenge, receiving a prize of $50,000.  The JM foundation represents an ultra-rare disease as small in numbers and equally horrific as Sanfilippo.

Notice the 1st, 3rd and 4th winners are all for Elephant sanctuaries... Kind of random... Altogether they raised with bonus prizes: $768,011 for the homeless elephants.

Fun Fact
Our gene therapy is less then two years out from going to clinical trial.  We need $750,000 to finish our toxicology testing for our gene therapy.  Jonah has a chance to fight his fate and hereafter children born with Sanfilippo type C will not die of Sanfilippo type C. Think on that.
 
Just recently, we barely missed winning $50,000 in the online Microsoft contest.  Microsoft was giving away $50,000 to 5 different foundations in the U.S. To win you had to be one of the five foundations that had the most FB, Twitter and Instagram posts in support of your cause.  Supporters had to post daily for a month on all their social media sites.  We entered a week late into the contest. Yet we were neck in neck with the three of five of the winning foundations.  We almost had it, alas our reach just didn't reach far enough.

FYI the most voted nonprofit was Ian Somerhalder’s animal sanctuary.  Ian, is known for his vampire role on Vampire Diaries.  I didn’t know who he was either until the contest, but he has 6million followers on twitter!



Does it disturb you that animal sanctuaries often take precedence in these voting contests?  It used to really annoy me.  I contemplated not doing it, how could I subject my son to loosing out to a frog farm? It comes down to the fact that we really really need the funding and I don't have time to plan and execute lavish physical fundraisers, throughout the year.  These contests are cheap and easy to do.  Plus they help raise a massive amount of awareness.  We can reach a lot more people through social media, then with a local fundraiser.  Don't misunderstand me, we're still all about local fundraisers, these contests are great fillers between the physical fundraisers.

My point is... I hope it enrages you or at the very least rubs you the wrong way, that people vote for puppies over babies.  Maybe then you'll try to do something about it.  

I realize now, that people just don't know any better.
Think about Ian and his fan base of teenaged girls, blindly voting for their idol's animal sanctuary.  These teenagers have know idea that there are 7,000 rare disease, with only 400 treatments. Half of those rare diseases affect children and a third of those children won't live past the age of 5.

Can you explain to your healthy teenager that they could have been one of the children suffering from a rare syndrome?
It really just comes down to the luck of the draw.  I had NO idea that this huge community of dying children existed either.  I'm here now to tell the world that they are here and our children need your help.  So pry the Iphone out of your teenagers hand and ask your teen if they have an instagram or twitter account... Like you're accusing them of smoking pot.  Oops that's legal now in OR. Make them follow JJB, then have your teen teach you how to use twitter and Instagram. If you can't beat them join em' on Instagram.  It will be a great bonding experience.

Follow us on Twitter (followers 625). https://twitter.com/JJB4CURE
Follow us on Instagram (followers 265) https://instagram.com/jjb4cure/
Follow us on FB (followers 2,740) https://www.facebook.com/Jonahs-Just-Begun-Foundation-to-Cure-Sanfilippo-Inc-132452613432013/?ref=hl
Sign up for our mailing list, see side bar for link. Watch for our action alerts.  We need your help.

FYI, I would never in a million years have a: blog, youtube channel, Instagram or Twitter account if it wasn't for my new job.  I wanted to be a stay at home mom, have a plot in the community garden and a spot on the PTA.

Lastly set yourself up for our mobile text account and get ready for Giving Tuesday.  To join text to the number 51555 write the message ‘JoinJJB’

Remember $750,000 means we could be in trial in less then two years. $50,000 pays the year salary of a postdoc.

This blog is in memory of my late Aunt Joy.  Aunt Joy who lived up to her name, was a very lovely lady and devoted mother.  My heart aches for my cousins.  She will be laid to rest in Oregon next week.

Due to bad timing, this event was cancelled we will reschedule for next year!

KOIN, T.V's Eileen Park has promised to emcee, at our new date.

'Mirror, Mirror on the Wall... Who's the Rarest of them All'  Was and still will be dedicated to Landon, on the left.  Landon was just 9 years old when he unexpectedly passed away in his sleep. The same day as Landon's passing, I woke up Jonah and got him ready to start his first day of second grade.