HELP RYAN DUNNE

With motherhood, it’s like you become the Mom of the whole world, your heart hurts for little ones you don’t know at all, but know are hurting. I know you’re with me, we’re Moms. We feel bad for the kids on the other team when our kids win a sporting event, we cry when we see child abuse on the news or a kiddo in a hospital bed. So, given that, and the fact that I just watched Dallas Buyer’s Club and am in the mood to question the purpose and effectiveness of the FDA – this email struck a nerve with me, hard.

Please take a minute to help Ryan Dunne, a 9 year old Denver boy with Duchene Muscular Dystrophy (DMD). DMD has traditionally been considered terminal with no known treatment. However, there are two medications that were effective in clinical trials – Ryan was in the trials and did great, he and his family saw significant improvement – but are awaiting FDA approval. Since the trial is over and the drugs aren’t approved yet, Ryan has to be off the medications until they’re approved. He stopped taking the meds in September and his Dad says he’s “starting to slide down the slippery slope of DMD that ends in death.”  I know that hurts your heart, mine too. There are drugs that Ryan and his family know will help, but he can’t have them until the FDA approves them.

Please help! There’s an on-line petition that needs 100,000 signatures by March 29, 20014 to get the FDA’s attention. It literally took me under a minute to create an account and sign.  Of course I was crying, and praying for this family, and hugging my 9 year old.

Please see the email below from the Dunne family.

*I don’t know the Dunnes personally, this email was sent to me by a friend whose children go to school with Ryan. I’m so happy to help, and know you are too.

Thanks!

 

 

Hi Everybody,

 

I would like to apologize in advance for the mass email blast. I know how

much every body hates this sort of thing, but this is very important.  I

need 2 minutes of your time. If you dont want to read this than just

follow the liv=nk and sign the petition.

 

https://petitions.whitehouse.gov/petition/urge-fda-say-yes-accelerated-approval-safe-effective-therapies-children-duchenne/qtRww0rN

 

Most of you know my son Ryan. Ryan is 9 years old, a 3rd grader and has

Duchene Muscular Dystrophy.  DMD is a terminal disease that, until now,

has had no treatment and no hope for long term survival. Kids with DMD

start to get weaker in elementary school and are often confined to an

electric wheelchair by middle school.  It does not get any better. The

body becomes progressively weaker and the boys lose the use of their upper

extremities, followed by weakness and loss of function of their lungs and

heart.

There are two medicines that are awaiting approval by the FDA that can

treat DMD.  We know this because Ryan was part of a group of boys that

were in a study last year to test the effectiveness and safety of this

medicine.  In the six months that Ryan was taking one of these drugs we

saw marked improvements in his strength, stamina and health overall. He

has been off the medicine since September and we can see him starting to

slide down the slippery slope of DMD that ends in death.

This is where you come in. Ryan needs you to sign an on line petition to

urge the FDA to approve the re-dosing of this drug immediately.  We need

100,000 signatures.  That is a lot. I don’t know that many people and I

doubt that any of you do, but like that shampoo commercial if I tell two

friends and they tell two friends and so on and so on. We can reach

100,000 pretty quickly. They got way more than 100,00 people to sign a

petition to get Beiber sent back to Canada in a matter of days and this is

so much more important.

 

So, Here is the link:

 

https://petitions.whitehouse.gov/petition/urge-fda-say-yes-accelerated-approval-safe-effective-therapies-children-duchenne/qtRww0rN

 

please click it or cut and paste and follow the instructions and then bug

your friends and their friends to sign this petition, share it on

Facebook, Twitter or wherever you want. Copy any or all of the text.

Please dont put this off till later we need 100,000 signatures by the end

of March.

 

Thanks,

Chris, Jen, Conor, Jack, and Ryan Dunne

 

You Need This: slim, distressed boyfriend jean

You Need This: slim, distressed boyfriend jean

Where I’m Shopping (Online)

Spring has definitely sprung in the fashion world, frothy pastels are everywhere, crop tops are huge (we’ll address this later), white on white is h-o-t and orange is the new black – yay! However, it is still decidedly WINTER, not just here in Colorado, but in much of the country. Luckily, there are still some fabulous sale steals to be had if you know where to look.  I’ve been looking at the ScoopNYC and Barney’s Warehouse sales online and, one of my favorites, Shoptiques.

ScoopNYC’s warehouse sale is (I get giddy just typing this) an additional 50% off the sale price! Yep. I scooped up 2 cashmere sweaters and some AG corduroy leggings. I’ll be wearing these through March, ok April, here and probably for years.

ScoopNYC

 

There’s really nothing not to love about Barney’s and Barney’s Warehouse is like dreaming while you’re awake. I typically can’t afford much of a shopping spree there, but at these prices you can pick up an “investment piece” without quite as much investment. Just type in Prada and see how many boots and shoes pop up at 48-70% off, I dare you.  I bought some Prada boots on sale at Barney’s several years ago, and my cost-per-wear is probably about three dollars and 17 cents by now. I’m currently losing my mind over these purses… and checking back every day to see if they’ve sold. (cuckoo cuckoo)

BarneysChloe

BarneysGivenchy

BarneysRebeccaMinkoff

Barnneysrebeccaminkoff2

 

 

Shoptiques is another great site that (similar to Styleshack) rounds up amazing items from unique boutiques all over  the world (you can even search by neighborhood) and makes it sooo easy. NOLAN is a funky boutique in the Nolita neighborhood of NYC. I found this fab leather jacket on the Shoptiques website and NOLAN ships directly to me. Not only is it on SALE, but think of all the money I saved not flying to Manhattan and taking a cab to NOLAN. ;) A website after my own heart, Shoptiques provides a cost-per-wear calculator right on the site! I estimated I’d wear this jacket 40 times and mine came in at $4.97 a wear  - for a $600 jacket – I’ll take it.

With all the money you save shopping the Winter sales you can afford to check out this absolute gem, www.shopvanjean.com. I stumbled accross VANJEAN on Instagram (@shopvanjean) and fell in love with their clean, unique pieces and OMG the accessories. I’m coveting:

these Loeffler Randall shoes VANJEANloefflerrandall

these Helmut Lane leggings

 

VANJEANhelmutlang

 

this Lionette cuff

VANJEANlionette

 

and this ALC dressVANJEANALC VANJEANALC2

Truth be told, I’m also a little bit obsessed with the Phillip Lim handbag in this picture! ;)

HAPPY SHOPPING xoxo

 

 

 

 

FROM NYC WITH LOVE

NYoutfit2

 

I’m sharing some of the yummies I brought back from NYC – gross flu bug not included! Tweed Sweater Jacket, Ella Moss. Chevron Skirt, Skies Are Blue. White Shirt, Anne Fontaine. Blue Wedges, J.Crew (last year).

NYoutfit

 

NYoutfit3

 

 

I can’t stop staring at my new boots, (Stuart Weitzman)

NYboots

 

and, I match the family room, so I’ve got that going for me…

NYboots3

 

 

This purchase isn’t terribly exciting or fashion forward, but I’m including it because this vest (Zara) is the $79.90 cute cousin of the more expensive and sold out J. Crew version.

NYvest2

 

and our sweet Rain had to make the blog…

NYvest

 

Now go shop those President’s Day Sales! Smooch!

Happy Valentine’s Day

Happy Valentine's Day

Happy Valentine’s Day

Happy Valentine's Day

STYLESHACK

styleshack

 

 

SEARCH YOUR STYLE AND SHOP IT LOCAL:

I looove online shopping, I live in the mountains, have three kids and can’t always make it to my favorite stores. If insomnia strikes and I need a retail fix at 3 am, Nordstrom.com is ready and waiting. Google “camel cashmere coat” and you’ve got options galore – usually big retailers that can have an item on your doorstep in 7 days. The conundrum? I also looove to shop local and make an effort to try and support the boutiques that know me, know my size and call me when my faves are in. Those search engine buffets, while helpful, are also terribly overwhelming, and there’s something so feel-good about driving your local economy. Hellooo Styleshack!

Here’s the skinny on Styleshack in their own words:

Styleshack is a customized style & shopping search engine. Styleshack will enhance the online to in-store shopping experience as users will be able to shop based on their personal style preferences and geographic location. Styleshack users will be able to create “Style profiles” which will allow the service and site to match Styleshack users to their preferred stores, brands and style genre and assist them in discovering NEW stores and brands throughout the country. Styleshack aims to be your personal e-stylist, making it easier to shop your style, locally!”

It’s a big idea, but that doesn’t faze founder Rachel Schostak, she’s a graduate of the Fashion Institute of Technology and a voice (with an energizer-bunny-like tenacity) for small boutiques everywhere. Her mission is to make it easier for local retailers to be discovered, and easier for you to discover them. Brilliant.

You can go to Styleshack.com and browse the wares, search by item or by boutique, or by geography… OR, you can do it the really fun way, take their quick quiz (designed to emulate a conversation with a stylist) and get recommendations based on your style. Styleshack has defined 9 style archetypes that fit a modern woman.  Boho chic, Classic, Eco Chic, Edgy, Professional Chic, Glam Madame, Romantic, Sporty Chic and Trendy. After defining your archetype, you can shop products that have been selected to fit your style. For the record, I fit into pretty much all of those categories on different days – that’s ok – just a guideline!

Founded in Detroit, Styleshack boutiques are slightly Mid-West-Centric right now, but they’re growing fast – and, have implemented a cool program to encourage fashion bloggers around the country to recommend their fave local haunts.  The best part, in my opinion, is the ability to shop beautifully curated collections, it’s why we boutique shop in the first place, the best of known brands + up and comers.

Schostak told me, while working for a retailer in Detroit, she realized that lots of people would love to invest in their local community, but often look outside because they don’t have time to go store to store. Find the perfect item on Styleshack? Put it on hold with the local retailer for 48 hours and go pick it up, at your convenience. OR, have it sent to your home. Get sale alerts and the first scoop when new items arrive.

Retailers pay a monthly commission, lower if they already have e-commerce, and reap the benefit of Styleshack’s on-line infrastructure and marketing.

Evergreen-ites, you’ll find our beloved Mountain Daisy in the boutique directory - and, I’d guess, more goodies to come! I’m hooked.

Happy Weekend!

What does the fox say?

Line ribbed sweater
theoutnet.com

Converse footwear
$59 - gravitypope.com

Victoria Beckham leather tote bag
$1,465 - net-a-porter.com

Chan Luu bracelet bangle
$225 - bloomingdales.com

Accessorize fox shawl
accessorize.com

Calypso St Barth slouchy hat
calypsostbarth.com

Ray-Ban mirror aviator sunglasses
$225 - superette.co.nz

Grey throw blanket
amazon.com

Fox home decor
cafepress.com

What does the fox say?

What does the fox say?

Line shirts top
theoutnet.com

Collared shirt
target.com

Converse oxford shoes
$59 - gravitypope.com

Victoria Beckham genuine leather tote
$1,465 - net-a-porter.com

King baby studio jewelry
couture.zappos.com

Chan Luu crystal bracelet
$225 - bloomingdales.com

Ray-Ban mirror sunglasses
$225 - superette.co.nz

Calypso St Barth grey hat
calypsostbarth.com

Accessorize fox shawl
accessorize.com

Gray bedding
amazon.com

Fox home decor
cafepress.com

a POP of pink will banish the January doldrums… I promise!