• it’s common knowledge that I have more than • it’s common knowledge that I have more than enough photos with Dr. Standard – however, I think I now have more selfies with Dr. Herzenberg, world-renowned surgeon and selfie king 👑 

it felt just like old times (Save-A-Limb reunions 🥹) this weekend celebrating Dr. John Herzenberg’s retirement. 

my first core memory with Dr. Herzenberg was the day I had my first surgery at @limblengthmd. He came into pre-op and introduced himself, stating he may be alongside Dr. Standard in the OR as my case was pushed back due to an emergency case. if you know me, you know I don’t do well with last-minute changes. However, when Dr. H came into my preop, I felt nothing but comfort and compassion from him.

for the past 13 years now, despite being ‘standardized,’ Dr. H has been a staple in my life medically, personally, and professionally. He’s done so much for me behind the scenes, and I’ll forever be so grateful for it. and for those who attend the annual @achondroplasiaresearch conferences, you may see him there ☺️

it was so great seeing familiar faces this weekend while honoring the LEGendary Dr. H – reminiscing on memories we made together over the years and making plans to make new ones! 💙

#limblengthening #topdoctors #teamriao #BLDC #BLDC2023 #baltimorelimbdeformitycourse #savealimb #orthopedicsurgery #patientadvocacy #patientadvocate #patientcare #achondroplasia #achondroplasiaresearch #dwarfism #dwarfismawareness #skeletaldysplasia
• 13 years ago today, “never have I ever befor • 13 years ago today, “never have I ever before” was what I knew before @taylorswift capitalized off the month of august, and right before being taken back into the OR at @limblengthmd – on this day 13 years ago, I had never been more sure of the decision I had only made 19 (MY number) days prior on 8/5/10

earlier this month, I attended #tstheerastour on 8/5, 13 years to the very day when I first met Dr. Standard and booked my surgery for 8/24/2010

I’ve been a fan of hers ever since around the time I was 13 years old. so much of her music has resonated with me, but even more so during these past 13 years of my life – especially folklore and, more recently, midnights

I can’t put into words what it felt like when she began playing ‘you’re on your own, kid’ as one of the surprise songs at my show. the bridge alone best describes everything I have felt these past 13 years

I’ve always been transparent, but I also set boundaries for myself. when I decided to share my experience, I did so because I knew had there been someone for me to watch go through this when I was 13 and tell me, “you’ve got no reason to be afraid,” everything probably would’ve been much different…but then again, I probably wouldn’t be making this post 🥹 

there’s so much more I have to say, but instagram only gives so many characters – once I get it all down, I’ll let you know 🤍

for now, HAPPY LEGIVERSARY TO ME! 🦋

#achondroplasia #dwarfism #dwarfismawareness #skeletaldysplasia #limblengthening #legiversary #patientadvocate #patientadvocacy #onthisday #erastour #august #yoyok
• it’s 8/05 !!!!! and I’m here to see THE he • it’s 8/05 !!!!! and I’m here to see THE headLINE !!!!!!!!!!!!! 💚💛💜❤️🩵🖤🩷🤍🤎💙

it’s also 1️⃣3️⃣ years TO THE DAY that I made the decision that changed everything for me 🥹

@taylorswift @taylornation #TSTheErasTour #LATSTheErasTour / @haimtheband @estehaim @daniellehaim @alanahaim @gayle @grassodrums @killsweetmax / @eliottnicole @gypsymoonshine @jeslynmusic @melanienyema / @paul_sidoti @amosjheller @davidcook88 @mattbillingslea @maxephronbernstein @sheplaysdepiano @smalltown1 / @natalie_lecz @amandabalen @audreydouglass @janravnik @kamnsaunders @karenschuang @kevin_kid_xs @nat_b_peterson @rastapha @sam_mcdub @sydneymosss @tamiyaxlewis @taylorbanks39 @teetime23 @whyleyy 💚💛💜❤️🩵🖤🩷🤍🤎💙
• MY HEART 🩷 MY HIPS 🍑 MY BODY 💪🏻 MY • MY HEART 🩷 MY HIPS 🍑 MY BODY 💪🏻 MY LOVE – it’s health by a THOUSAND tucks ☺️

officially in my 1000 club era ✨ I’m coming up on my @taylorswift year (13 years!!!) of when I had my first lengthening and fell in love with Baltimore 💜 ever since then, I’ve never taken for granted what my body is capable of and I make sure to take care of the broken bones I mended (x3) and for me, that’s @purebarre_baltimore ❤️

#purebarre #purebarrestrong #purebarrebaltimore #lifttoneburn #LTB #athleta #powerofshe #alo #aloyoga #achondroplasia #dwarfism #dwarfismawareness #skeltaldysplasia #limblengthening #patientadvocate #patientadvocacy #taylornation #tstheerastour #swiftie #deathbyathousandcuts
• butterflies + Dr. Ravi + @dietcoke w/ lime = t • butterflies + Dr. Ravi + @dietcoke w/ lime = the best achondroplasia research conference by far 🥹

this past weekend marked the @chandlerproject’s 5th annual @achondroplasiaresearch conference, @pharmachon 🧬

this year, for the first time EVER, six (!!!!!!) companies: @biomarinpharmaceutical, #QEDtherapeutics, #TYRABiosciences, @sanofi, #AscendisPharma, and @pfizerinc were in the same room as patients with #achondroplasia, parents, caregivers, and physicians sharing about their respective product on the market, failed program, new research, potential new program(s), data, and more. As a patient advocate, I feel it’s so important to hear directly from the researchers and lead investigators behind the science, and not through a second party 💜

thank you to my friend, Sivani Gadriaju, PharmD, who shared her journey of living with achondroplasia and becoming a pharmacist – seriously, how fitting for the event, right?!

the inspiration for ‘pharmachon’ actually came to me years ago (literally right after the first one in ’19), but I wanted to wait until I felt the time was right and this year was perfect – and there was still room for the expert physicians 😉
🧬 Dr. Ravi Savarirayan, @murdoch_childrens
👶🏼 Dr. Janet Legare, @uwmadison
🦴 Dr. Shawn C. Standard, @limblengthmd
💉 Dr. Philippe Backeljauw, @cincychildrens

it meant so much to me this year that four patient advocate groups outside of the US traveled all their way to attend 🩵🧡💚💛
🇦🇷 @asociacionaconar
🇪🇸 @fundacionalpe
🇧🇷 @nanismo.brasil
🇨🇴 @pequenaspersonaslatinas_

I love y’all so much and can’t wait to come visit! 🫶🏻

overall, there are so many cherished moments from the event, but the two that have stuck with me the most are a parent of a six-week-old with achondroplasia who came and said this is exactly what they and their spouse were searching and hoping for 💕as for the latter, see poor quality video, but high quality feels at the end 💐

brainstorming for next year starts soon (pants optional…iykyk)

#pharmachon #achondroplasiaresearch #dwarfism #dwarfismawareness #skeletaldysplasia #patient #patientadvocacy #patientadvocate
• the raddest dad 🧡 no matter what I do, good • the raddest dad 🧡 no matter what I do, good decisions or bad 🥲 he’s always so proud of me and never lets me forget it 🥹 happy #fathersday !! ***PEACE*** ☮️
• she’s not a regular mom, she’s a cool mom • she’s not a regular mom, she’s a cool mom 💁🏼‍♀️ how many momma’s do you know that are like “yes baby! let’s go girl!!” when you’re like “hey, I want to break my bones” 🤪 and then she immediately starts doing all the research and things 🥰 and two weeks later on 8/5/10 becomes one of your best days together because things are getting real 🥹 and then 13 years later from that very date you’re going to have another ~ best day ~ ever 🩷 Happy Mother’s Day, momma 💐 i love youuu!! 💜

#mothersday #mom #momma #mommasgirl #momsanddaughters #achondroplasia #dwarfism #dwarfismawareness #skeletaldysplasia #limblengthening #patientadvocacy #patientadvocate #caretaker
• Long Live (Legs) (Chandler’s Version) I sai • Long Live (Legs) (Chandler’s Version)

I said remember this moment, in the back of my mind…it was the end of a decade, but the start of an age 🥹

you could say that 10 years ago marked the beginning of my ‘Speak Now’ era as it was my third lengthening and I was 19 years old 💜

my third lengthening is the one I will always remember most. Dr. Standard once told me the same thing…it was a LONG day in OR 19(!!!) – one of the Precice Nails (internal telescoping lengthening rod) had trouble going into my femur and he was fighting with it 😅 but I also knew (pre-operatively) from that moment forward, my life would never be the same. 3’10” to 4’6” (okay, 4’5 and three-quarters) was one thing, but 4’5” to 4’11” was magical 🪄

before lengthening, I felt like I was standing on the sidelines of my own life wanting, waiting, and wishing for that moment and life. I had cynics telling me how absurd it was for me to be so ‘brutally honest’ and ‘unfiltered’ about the choice(s) I had been making about my own life and the decision to share about them. there were so many moments where it truly felt like I was fighting with dragons 🐉

despite all of that, it was the time of my life…crashing through walls (with wheelchair marks at the HP house and my own to prove it) and shining a light on the life I always longed for 🥰

Long live my long(er) legs and the magic that was made ✨

P.S. this is a PSA to let everyone know that when #SpeakNowTaylorsVersion comes out on 7/7, it will be my entire personality 🤗

@taylorswift @taylornation, this is me trying to ask for the secret song (piano) on 8/5 to be Long Live (Taylor’s Version)...which will also be exactly 13 years(!!!) TO. THE. DAY. of when I made the initial decision to undergo limb lengthening (I’d also scream, cry, and throw up if @jackantonoff was a surprise guest) 🍅

#limblengthening #achondroplasia #dwarfism #dwarfismawareness #skeletaldysplasia #precicenail #precice #nuvasive #fixator #externalfixator #taylorspatial #taylorspatialframe #orthopedicsurgery #orthopedics #patientadvocate #patientadovacte #taylorswift #taylorsversion #taylornation #swiftie #longlive #speaknow #speaknowtaylorsversion #tstheerastour #erastour
• starts watching @daisyjonesandthesix and immed • starts watching @daisyjonesandthesix and immediately enters a new hair-a ✨ #obsessed

👩🏻‍🦰: @rachelweaver_styles / @fifthandmanellc

#rachelweaverdoeshair #baltimorehairstylist #kevinmurphy #baltimore #canton #sola #daisyjonesandthesix #auburn #auburnhair #newera #newhair #beforeandafter
  • ABOUT
  • GALLERY
  • PRESS
  • CONTACT
  • ABOUT
  • GALLERY
  • PRESS
  • CONTACT

chandler crews

  • blog
  • q & chanswers
  • contact

Sep 23, 2023 • CONFERENCES & MEETINGS, PATIENT ADVOCACY

2023 global genes rare advocacy summit

Week in Rare, hosted by Global Genes, has easily become one of my favorite weeks I look forward to each year. This year, I was on a panel with Nasha Fitter, co-founder and CEO of FOXG1Research, and Luke Rosen, founder…

Read More

Nov 22, 2022 • ACHONDROPLASIA, DIAGNOSIS, PHARMACEUTICAL

tolerate it

I wake and watch you breathing with your eyes closedI sit and watch youI notice everything you do or don’t do dessner, a. swift, t. (2020). tolerate it. on evermore. Authors Note: Because of course I reference Taylor Swift whenever…

Read More

Jun 21, 2022 • ACHONDROPLASIA, CONFERENCES & MEETINGS, RESEARCH

wind in my hair, I was there

5, 6, 7, 8…I have *bean* waiting to *reflect* on this past weekend & now that I’m literally in the ☁️ clouds ☁️ and not in front of one, I can – since 2019, the @chandlerproject has been hosting the annual @achondroplasiaresearch conference &…

Read More

Apr 1, 2022 • ACHONDROPLASIA, LIMB LENGTHENING, NEWS, PHARMACEUTICAL, RESEARCH

ellie simmonds: a world without dwarfism

A few months ago, I spent a beautiful day out in the Bay Area with Ellie Simmonds, a Paralympic five time gold medallist. For hours, we chatted about our lives and shared stories over coffee and tea. If you’re in…

Read More

Feb 28, 2022 • ACHONDROPLASIA, PATIENT ADVOCACY

rare disease day • 2022

I have achondroplasia and am one of many living with this condition which is caused by a mutation in the FGFR3 gene. On my platform, I represent myself. I choose how I identify my diagnosis, how I treat my diagnosis. And I choose what…

Read More

Jan 21, 2022 • LIFESTYLE

it’s supposed to be fun turning ’21

Remember last year when we turned ’21? It was supposed to be fun, right? At least, that’s what Taylor thought when she turned 21 *forever internally screaming, “screw you, Jake Gyllenhaal!”* 😫 Don’t get me wrong, 2021 was a fun…

Read More

Nov 17, 2021 • ACHONDROPLASIA

hope for achondroplasia 🕊️

To cure vs. To treat. • To cure is to complete the restoration (get rid of) of health.• To treat is IMPROVE health, but may not include the complete elimination of a disease. What’s coming up for achondroplasia isn’t a…

Read More

Oct 25, 2021 • ACHONDROPLASIA, LIMB LENGTHENING, PATIENT ADVOCACY

dwarfism awareness day • 2021

For as long as I can remember, the butterfly has always been my spirit animal 🦋 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….

Read More

Aug 5, 2021 • ACHONDROPLASIA, LIMB LENGTHENING, SURGICAL

11 years since

Jul 12, 2021 • ACHONDROPLASIA, CONFERENCES & MEETINGS, LIMB LENGTHENING, PATIENT ADVOCACY, PHARMACEUTICAL, RESEARCH, SURGICAL

achondroplasia research conference | 2021

Last weekend, The Chandler Project hosted its 3rd Annual Achondroplasia Research Conference. With a sigh of relief, I can say, it was a success with over 100 attendees from 21 countries! Although it was offered worldwide, thanks to technology, it…

Read More

Apr 24, 2021 • ACHONDROPLASIA, LIMB LENGTHENING, NEWS, PHARMACEUTICAL

born small

I had the honor of being part of this project by the Special Broadcasting Service (SBS), Australia’s most diverse broadcaster, that focuses on the trial for vosoritide, a therapeutic treatment that will soon be available to those affected by achondroplasia….

Read More

Apr 8, 2021 • ACHONDROPLASIA, LIMB LENGTHENING

never change, but never stay the same

It’s been 227 days since I celebrated my 10-year leg-iversary and since I quoted Taylor Swift then, I may as well keep the theme going and quote her today – also, I’m stoked af for the drop of Fearless (Taylor’s Version) tonight…

Read More

  • 1
  • 2
  • 3
  • 4
  • Next →

work with me

  • PRESS
  • PRIVACY POLICY
  • COOKIE POLICY
  • CONTACT

stay connected

on the site

  • ABOUT
  • GALLERY
  • PRESS
  • CONTACT
  • PRESS
  • PRIVACY POLICY
  • COOKIE POLICY
  • CONTACT

Copyright © 2023 chandler crews · Theme by 17th Avenue

 

Loading Comments...