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

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!

92 Kabuki patients enrolled from around the world in our first year

142
Families in contact with Roya Kabuki Initiative
92
Families Enrolled
263
Total Individuals Enrolled (all KS kids, parents, siblings, etc.)

As of 10/30/2018