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Saturday, November 12, 2016

She's got grit

So how about that election…  I kind of had a sinking feeling. I take solace in the fact that Hillary won in the popular vote. I didn’t vote for Hillary because I’m a feminist or because I think Donald is a piece of sh*& but because Hillary is the better person for the job.

Up until now I have never given much thought to being a feminist.  You can call me a feminist and I won’t consider it a label but just one of my attributes. 

I admit I’m a sell out. I haven’t stood up for equality in my mission to create a treatment for Jonah’s syndrome.  When I formed Phoenix Nest, my first thought was, who’s going to be the CEO?  It can’t be me.  Nobody will take me seriously, I’m just a mom, a women.  Asking Sean to stand in front of me as CEO was not a hard decision- he’s a man with a Ph.D even, he’ll be accepted.   My only thought was for Jonah and doing what it took to get a treatment for our kids. Someday maybe I’ll go back and get my MBA and take the helm of Phoenix Nest.

Call me a feminist but don't call me a‘fighter mom’.  People call me a fighter mom all the time, as if it’s a compliment.  For me, as a feminist it’s a derogatory remark.  As if because I’m a women I’ll have to fight the system.  While a man can just make a few phone calls and it’s all taken care of.  You never hear anybody call Mark Dant a fighter dad.

Somebody once told me about a time that they had to try and explain my personality to another person.  This was an awkward conversation for me.   Listening to someone try to sum me up in a word. I stopped her and told her next time you find yourself talking about me, just say: “The girl has got grit.” It has a nice ring to it.

When I found out that Hillary didn’t win office, I was in denial, like watching the trade towers falling- this just can’t be happening.  I couldn’t wrap my brain around it. When it sunk in- my heart  sank.  I thought if Hillary couldn’t convince millions of people that she was the better person for the job.  Then how can I ever expect people to donate to our campaign?  I felt defeated on many levels.

JJB is getting ready to launch our Holiday Giving campaign.  Mari and I have been working very hard on how it is that we’re going to convince people to give this Holiday Season. We talk about what it takes to convince people all the time.  We’re a non-profit we survive off of donations. Yet, it seems impossible to convince people to donate.  Almost a thousand people read my blogs.  Over the last two weeks I have been posting to: Twitter, Instagram and FB asking people to join our: “Save Me From MPS III” campaign.  Mari sent out an email blast. I personally emailed friends and family asking for help. This message hit thousands of people.  In the last two weeks, guess how many people took action and joined our team? 2 people.

I had a little pity party for myself and Hillary earlier this week.  I did things that made me happy- retail therapy helped. I made a collage frame of Jonah and Jeremy’s selfies.  I stare at it constantly, their smiling faces make me so happy. During my down time I realized that I had convinced 100’s of people to do things that they never saw themselves doing.  Case in point, Sean gave up his day job to help me. Our lawyers work pro-bono and discounted rates.  I convinced  the scientists to work on an ultra-rare disease, when they could have been focusing on cancer. I have brilliant advisors around the country that take time out of their busy schedules to help me whenever I ask. I convinced Jonny Lee Miller to help, he ran a 100 miles in one day to help JJB.  I have given talks that have inspired others to follow my lead and who are now creating their own biotech’s and winning grants!  Friends and family from coast to coast (but nobody in the middle…) have given their blood, sweat, and tears to put on fundraisers for JJB.  I have spoken to our congress people and they have been convinced to help us.  It occurred to me that I am good at convincing people to help.  But maybe it’s not completely about convincing people, but reminding them to help.  Reminding them over and over and over again.

So here is your reminder.  Giving Tuesday starts November 22nd, on that day, Crowdrise opens up it’s donation portal.  JJB has set up a campaign on Crowdrise called “Save me from MPS III”
https://www.crowdrise.com/save-me-from-mpsiii/fundraiser/jonahsjustbegunfound
JJB is asking you to donate or join our team. All you have to do is create a little profile and hit the tab on our page that says “fundraise for this campaign” We're asking that you join the team NOW so that we can hit the ground running on November 22nd.  The campaign will run all the way through December. There will be contests and cash prizes that we need to be ready for.

When you link your profile to “Save me From MPS III” you can go in and edit your fundraiser.  Make it personal, upload your own relevant pictures and story of why helping JJB is important to you. For inspiration, read what Jennifer Wood-Mercier wrote.  Then blast the link out to everyone you know and even some that you don’t.

Can you do it?  I’ll be watching.

Wait a second.  It just occurred to me it's INSPIRATION that you all need not convincing!  Duh.  I don't have to convince you that Jonah and the children suffering from MPS are worth saving.  I need to inspire you.  Hm what can I say or do to inspire you?   I need to think on that.  In the meantime look into these engaging, brilliant and happy blue eyes. Jonah doesn't know that he's dying, lets get him a treatment before he does.