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…
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…
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…
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….
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…
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,’…
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…
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…