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#WalkforKabukiFriends

#WalkforKabukiFriends

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 […]

Going the extra mile for KS

Going the extra mile for KS

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 […]

Kabuki Team the visits State House

Kabuki Team  the visits State House

  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 […]

Telehealth Clinic

Telehealth Clinic

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 […]