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Aug 5, 2021

11 years later, I remember it all too well

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A post shared by Chandler Crews (@chancrews)

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hi, I'm chandler

Strategic Communications Professional with 6+ years in public speaking, social media management, patient advocacy, and event planning. Let's work together!

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･ this year really zoomed by with a whole lot of

･ this year really zoomed by with a whole lot of barre, beau, bones, blonding, breve lattes, brûlée babes, burrito bowls, butterflies, and business this year — #2022, let’s see what you can do *holds breath in anticipation* #yearinreview

peep at the location because @purebarre_baltimore is where I spent most of my time this past year and I’m so mad at myself for forgetting to include a photo 😫 spending time there is the sole reason I’ve remained somewhat sane this past year – I love y’all sm and am ready for the 2022 challenge 💪🏻

･ well, it’s been a minute since I’ve posted

･ well, it’s been a minute since I’ve posted something that’s not controversial — cheers to #28 🍸

･･･
#birthday #birthdaygirl #achondroplasia #achondroplasiaresearch #dwarfism #dwarfismawareness #skeletaldysplasia #limblengthening #patientadvocate #patientadvocacy #controversy

･ who’s going to tell this double-chinned litt

･ who’s going to tell this double-chinned little squish that 28 years later on the very day this photo was taken, and she was born and diagnosed with #achondroplasia, that the first ever treatment for achondroplasia from @biomarinofficial was approved by the FDA? 🥺

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#birthday #achondroplasiababy #achondroplasiaresearch #dwarfism #dwarfismawareness #skeletaldysplasia #limblengthening #vosoritide #voxzogo #voxzogo™ #patientadvocate #patientadvocacy

･ a lot to celebrate and to be #thankful for thi

･ a lot to celebrate and to be #thankful for this November – first, #RedTaylorsVersion ❤️ second, my birthday 🥳 and last, but certainly not least, the approval of the first therapy for the treatment of #achondroplasia from @biomarinofficial – that alone is a reason to celebrate 🕊

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#achondroplasiaresearch #achondroplasiababy #vosoritide #voxzogo #dwarfism #dwarfismawareness #skeletaldysplasia #limblengthening #patientadvocate #patientadvocacy #28

･ for as long as I can remember, the #butterfly

･ for as long as I can remember, the #butterfly has always been my #spiritanimal 🦋 every year on #dwarfismawareness day, I like to reflect back on my past lifetime and compare it to the life I live today.

#Butterflies represent rebirth, transformation, change, hope & life. Coincidentally, these were the top 5 things on my list of reasons for why I wanted #limblengthening. Because for so long, I felt trapped in a cocoon that I was never going to breakout of. I was in a body that I was never supposed to be in.

I wanted change. I wanted a new life. I needed a transformation. Not everyone with #dwarfism feels this way because not everyone with dwarfism shares one lifestyle. There’s no one poster lifestyle when it comes to living with this #diagnosis.

We are all individuals first. We all make our own choices and changes in our life that best fit our own needs – just like everyone else in the world. The same goes for the parents and caregivers who are making decisions today on how they want to treat and care for their child’s diagnosis.

Butterflies are like individuals with dwarfism. There are many different forms, each one special in their own way. Some may migrate together. Others may fly away in a direction away from the others that best fits themselves.

When it comes down to it though, we all change at some point – in our own way and on our own time. And that’s what’s beautiful.

Happy #dwarfismawarenessday to those who celebrate 💚

･･･
#achondroplasia #achondroplasiaisbeautiful #DAM2021 #skeletaldysplasia #patientadvocate #patientadvocacy #rebirth #transformation #change #hope #life #metamorphosis #targetstyle #wildfable #wildfabletarget #baublebarfortarget #kendrascott

･ had a #sundayfunday with these wild ones at th

･ had a #sundayfunday with these wild ones at the @marylandzoo – racing for kids and saving limbs 💜 got my long overdue picture with @pace_doctor 🏃🏼‍♀️ just in time to commemorate national #physicaltherapymonth 💪🏻 almost at 15k steps for the day and my legs are on fire 🔥 it was a beautiful day overall ⛅️ missed those who couldn’t make it. I know we cherish these moments even more now — team RIAO is made up of people near & far who share such an incredible and unique bond. It’s something I’ve been blessed to experience in the past decade more than I’ve ever felt in my almost 28 years in the #dwarfism community – T H I S is my community 🥰

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#achondroplasia #dwarfismawareness #dwarfismawarenessmonth #DAM2021 #limblengthening #physicaltherapy #RFOK2021 #patientadvocate #patientadvocacy #baltimore #maryland #marylandzoo

･ autumn leaves falling down like pieces into pl

･ autumn leaves falling down like pieces into place…it’s finally fall, y’all 🍂 and, it’s October which means it’s #DwarfismAwarenessMonth. 💚

This year, pieces are finally falling into place. This is the last #DwarfismAwareness Month without a pharmaceutical treatment option on the market for those with #achondroplasia. 50 days from now, if pieces continue to fall into place, @biomarinofficial’s VOXZOGO will be FDA approved and available in the United States – more than a decade since they first announced their program for the treatment of achondroplasia.

When the #FGFR3 gene was discovered almost 3 decades ago, many in the dwarfism community were terrified that achondroplasia would soon go away...here we are 27 years later and it’s still here. I guarantee it’ll be here for another 27 years as well.

It keeps getting misconstrued that #VOXZOGO and the therapies coming up behind it will soon eradicate the condition. To my knowledge, they won’t. Those who are treated by these therapies will still have achondroplasia. Only, they’ll be able to live with the condition more fearlessly.

Fearless of #SIDS.
Fearless of foramen magnum compression.
Fearless of ear infections.
Fearless of trouble breathing.
Fearless of #spinalstenosis.
Fearless of legs that can only get them so far before giving out.

They will still have #dwarfism. That needs to be acknowledged and understood rather than trying to exile those individuals from the “supportive” community. We share a condition, not a lifestyle.

For the young girl in the photo, she knew what her options were. There were only two. Limb lengthening or nothing at all. Nothing at all could’ve been okay, but #limblengthening gave her everything she ever dreamt of & more. However, had there been another option(s), she may have been able to achieve her goals plus more by the time she was 16, giving her the chance to enter adulthood without the worry of future stenosis & other life-threatening complications.

I’m excited to see what new opportunities and hope this next year brings for this community — here’s to a stronger and supportive community. Happy Friday & October, friends. ✨

#DAM2021

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