Walk day has come and gone, and we are grateful for all of the friends and families who came out to support Team Kabuki Friends. Families from across the country (literally, from Alaska to Maine!) came together to raise over $11,000 for the Kabuki syndrome community at Boston Children’s Hospital. Old friends met […]
It’s not everyday that somebody runs a marathon, or that somebody raises over $10,000 for a research initiative. On April 15, 2019 Betsy did both! We are extremely proud of Kabuki mom Betsy Jackson for completing the 2019 Boston Marathon. Despite the rain and unpredictable New England weather, Betsy finished the 26.2 mile race with […]
Members of the Kabuki Program recently attended the Boston Children’s Hospital Children’s Advocacy Network Breakfast at the Massachusetts State House. While celebrating BCH’s 150th birthday, we took the opportunity to meet with Representative Christine Barber to share about the Kabuki Program and some recent bills and initiatives related to insurance coverage that will greatly benefit […]
The Advancing Care for Exceptional Kids Act (you can find a summary of the act here) was designed to improve care for children in Medicaid who have complex medical needs. The ACE Kids act has been making some very exciting progress in the past few days, passing through both the House and the Senate as part […]
The Roya Kabuki Program at Boston Children’s Hospital aims to serve the Kabuki Syndrome Community every day both in the research lab and in the clinic. On Sunday June 9, 2019, our team Kabuki Friends is heading outside and walking to support these efforts so that we may create a happier and healthier future for […]
Betsy is running the Boston Marathon with the Boston Children’s Hospital Miles for Miracles Team on April 15, 2019. While running 26.2 miles is an amazing accomplishment in itself, she also is dedicating her fundraising towards the Roya Kabuki Program’s research efforts. Betsy and her family are participants in the Roya Kabuki Program. We greatly […]
October 23 is Kabuki Awareness Day! The Roya Kabuki Team wishes the Kabuki community an extra sweet day!
Starting September 1st, 2018, the Roya Kabuki Program is able to offer virtual visits in the Roya Kabuki Telehealth Clinic. How does it work? Once a family has established care for their child with the Roya Kabuki Clinic at Boston Children’s Hospital, the family will be eligible to schedule follow-up appointments with Dr. Bodamer and/or […]
The Roya Kabuki Team spent an amazing weekend at the ATK meeting in Ohio (13-14 July 2018). Dr. Bodamer received the Elizabeth Golab Memorial Award, which is a huge honor for the Roya Kabuki Program.