Dear Roya Kabuki Program Community,
It is with bittersweet hearts we are announcing program manager Tara Daly is leaving Boston Children’s Hospital to take the next steps in her career at Merrimack College. With her departure, we wanted to take a look back on all of the amazing efforts of the Roya Kabuki patient community over the past 5 years.
Since the Roya Kabuki Program was established, we have enrolled ~150 families (almost 400 individuals!) into research studies. We have collected samples and medical data from many, combined to create a substantial patient repository to advance future studies. Through all of the clinic appointments, research enrollments, laboratory tests run, and annuals fundraising walks along the Charles River, the greatest piece we have learned is that the Kabuki syndrome community is strong. We look forward to the future of the Roya Kabuki Program and all that is yet to be discovered.
Our program coordinator, Rachel Gottlieb, will be continuing to oversee the research initiatives already started and spearhead the next endeavors to come. Please reach out to her at firstname.lastname@example.org or 857-218-KBKI (5254) with any questions.
All the best,
The Roya Kabuki Team