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 I can. In this post, I reflect on how my mother and I have ...
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 & this weekend marked the ...
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 the UK, you will get to hear this conversation and more on Tuesday, April 5 at 9 PM ...
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 my diagnosis means to me and that’s ...
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 year, with caution...which is a state of matter I think we're going ...
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 cure nor is it genocide. It's hope. Parents and caregivers are making ...
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 ...
11 years since
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 is the ONLY event for those in North America to ...
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. This SBS Dateline special, Born Small, ...
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 💫 She once said, "I’ll never change, but I'll never stay ...
Rare Disease Day 2021
It’s Rare Disease Day! Today, I’m wearing stripes to acknowledge those living with a rare disease. A disease is a “disorder of structure or function in a human...especially one that produces specific signs or symptoms.” Referring to achondroplasia as a “disease” is upsetting to some ...
