Our ProgressOur goal is to find a therapy for Kabuki Syndrome



Bringing together the dream of Roya’s family and the dedication of the team at Boston Children’s Hospital sparked the creation of the Roya Kabuki Program. Holding the Kabuki Syndrome community at the heart of our efforts, we will make a positive impact in the lives of children and families across the world. Using a patient centered approach in the clinic, we strive to provide high-quality care to children with Kabuki Syndrome. We perform cutting edge research in the laboratory to further understand the underlying mechanisms of Kabuki Syndrome. As we integrate findings from both the clinic and the laboratory, we aim to raise awareness and education in both the medical and lay communities. Our ultimate goal is to develop specific therapies for patients with Kabuki Syndrome. This is our commitment to you, and we hope you’ll join us on this journey.
 

Progress Updates

Blog

Going the extra mile for KS (4/30/2019) - 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 the support of some local ...
Kabuki Team the visits State House (4/29/2019) - 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 our patient community. In particular, we ...
ACE Kids Act Passed the House and the Senate (4/3/2019) - 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 of the Medicaid Services (H.R. ...
Join the 2019 Kabuki Friends Team! (3/20/2019) - 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 this wonderful community. We welcome ...
Listen to the Kabuki Podcast (3/7/2019) - CoRDS Cast is running a podcast with All Things Kabuki and Olaf. Hear what they have to say about Kabuki. Click here to listen.
Kabuki Awareness at the Boston Marathon! (1/18/2019) - 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 appreciate her dedication to the ...
It’s Kabuki Awareness Day! (10/23/2018) - October 23 is Kabuki Awareness Day! The Roya Kabuki Team wishes the Kabuki community an extra sweet day!
Telehealth Clinic (9/1/2018) - 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 nutritionist Dr. Krista Viau through ...
ATK 2018 Meeting in Ohio (7/14/2018) - 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.
New Kabuki Consent Form Available (7/10/2018) -   We have a new consent form for the Roya Kabuki Program! We are in the process of transferring all enrollments prior to July 2018 into this new protocol. Please reach out for more information: kabuki@childrens.harvard.edu, Tel: 857-218-KBKI (5254)
Kabuki Friends Crushed the Walk! (6/12/2018) - The Roya Kabuki Team would like to send an enormous thank you to every person who walked on Sunday or supported the fundraising efforts. We walked, laughed, raised awareness, enjoyed some ice cream sandwiches and contributed over $12,000 to the Roya Kabuki Program at BCH!
Team Kabuki is Half Way There! (6/5/2018) - Team Kabuki is just over half way towards reaching our fundraising goal for the Roya Kabuki Program! As the event is approaching this weekend (Sunday, June 10) we are getting excited to walk with some local families, raise awareness, and celebrate the Kabuki Syndrome community.
The Roya Kabuki Team is preparing for Ohio! (4/30/2018) - On July 14, 2018, we will be attending the ATK Kabuki Family Gathering in Cleveland for the second time. All Things Kabuki hosts a fabulous event each year for KS families to get together and have a fun filled day.
Boston Children’s Hospital Eversource Walk for Kids (2/21/2018) - On June 10, 2018, our team Kabuki Friends is walking to support the efforts of the Roya Kabuki Initiative, so that we may create a happier and healthier future for this wonderful community. Kabuki Kids, friends, and family are welcome to join our team and walk with us!
Family Gathering at BCH (1/7/2018) - In January we kicked off the new year by celebrating the launch of the Roya Kabuki Clinic with some local Kabuki families at BCH. We enjoyed an awesome day full of pinatas, minions, and lots of laughs! Thank you to all of the families who were able to make it, we are looking forward to seeing you and many new ...
Roya Kabuki Team Goes to Ohio (11/22/2017) - The Roya Kabuki Team traveled to Cleveland to attend the 2017 Ohio Kabuki Gathering. Rene King with All Things Kabuki went above and beyond to host an amazing family event. This was our team’s first Kabuki event, we left feeling fortunate and inspired to be working with such a wonderful community of families. Thank you for hosting, Rene!

109 Kabuki patients enrolled from around the world

175
Families in contact with Roya Kabuki Initiative
109
Families Enrolled
295
Total Individuals Enrolled (all KS kids, parents, siblings, etc.)

As of 06/05/2019