• 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

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Oct 4, 2020 • ACHONDROPLASIA

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