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 ...
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 ...
What Matters to Me
It's been a year since Love What Matters reached out and asked to share my story. My thoughts and words from this passage are still the same. However, looking back, there's more I wish I would've included. I talk a lot about the physicality of everything I've been through. If I'm being blunt, ...
Virtual Achondroplasia Research Conference
Register for the Virtual Achondroplasia Research Conference on Saturday, September 5 at 9 a.m. Eastern Standard Time. The conference agenda is filled with information and resources on the latest research and development surrounding achondroplasia, including surgical treatment ...
7 year Leg-iversary
I can't believe it's been seven years since my second leg lengthening. 🤩 I still have the monkey, can't say the same for the glasses though (they're around somewhere) and the legs are longer. So I guess happy 7 year LEG-iversary to my third? pair of legs 🥳 Dr. Standard told once me he'll never ...
Love What Matters
I had the opportunity to share my story with Love What Matters. Full story below :) “I knew the word ‘achondroplasia’ by the time I was able to talk. At 2 years-old I was able to say, ‘I have achondroplasia,’ even though I probably didn’t fully understand what it meant. By the time I was about 4, ...
A Boost of Confidence
I shared a similar comparison on my Facebook page recently, but this one is taken at the same event – nine years apart ~ so not quite the infamous decade challenge. In the first image, I'm in a wheelchair and Dr. Standard is kneeling down. The second image, we're both standing and my head meets his ...