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 learn about new research and developments, both pharmaceutical and surgical, in the treatment of achondroplasia, and soon other forms of dwarfism and skeletal dysplasia, in a safe environment without any fear of conflict or controversy.
Spreading awareness of this important and time sensitive information empowers this community of families to make informed personal decisions. One of the things I loved most about the in-person experience this year was giving parents a chance to interact casually with those who are working every day to give their children treatment options. Thank you so much to:
- Dr. William Mackenzie, Department Chair of Orthopedics at Nemours/Alfred I. duPont Hospital for Children for helping those with achondroplasia and hypochondroplasia know all there is to know and more.
- Dr. Andrew Dauber, Chief of Endocrinology at Children’s National Hospital, for bringing new hope to patients with hypochondroplasia and other genetic conditions.
- Dr. Ravi Savarirayan from Murdoch Children’s Research Institute for being the one person in the world who puts his all into helping those with achondroplasia.
- Drs. John E. Herzenberg, Shawn C. Standard, and Anil Bhave, PT from the International Center for Limb Lengtheningl…I don’t think I’ll ever be able to put into perfect words my gratitude towards the team. Your compassion and support means the world to me.
- BioMarin Pharmaceutical Inc., Pfizer, Ascendis Pharma, QED Therapeutics and The Rebsamen Fund for their sponsorship & support.
- My dear friend, Kristen Leppert, MGC, CGC for being our moderator and the only one who noticed my being extra for photoshopping my ZARA dress onto my Bitmoji.
- Jennifer Rizzolo, the entire staff at Royal Sonesta Harbor Court Baltimore, and Justin Day & his team from Encore Global for being on top of everything (both in-person and online!) – Seriously, without y’all, this could not have been possible.
- My mom for being anywhere and everywhere I told her to be, and for keeping me fueled on coffee and Diet Coke.
- And Beau, for being the best destress-cuddler and cutest conference attendee…even though you wouldn’t wear your bowtie.
Full transparency, I was so worried when I made the decision for this to be a hybrid event given the circumstances, but the feedback I’ve received already has been the best motivation to start planning the next one. So for now, stay tuned…
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