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 ...
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 ...
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 ...
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, ...
Fundacíon ALPE Acondroplasia 2018
If you were keeping up with me on social media last week then you probably know that I was in Spain for the sixth International Congress on Achondroplasia and other Bone Dysplasias. This three-day event is put on every four years by Fundacíon ALPE Acondroplasia. ALPE is such a wonderful organization ...
Dwarfism Awareness Month 2018
If you don’t already know, October is dwarfism awareness month & if you weren’t aware, I have dwarfism - obviously. I know it's hard to tell *sarcasm* So I thought I'd participate this month and share a bit here and there about my thoughts, feelings, and opinions about it all - so let's go ~ I ...
