OI Canada
Billy Huang is a biologist-turned-entrepreneur originally from New York City and a current fellow with the Office of Workforce Strategy. Growing up in a low-income and first-generation household and as a person with a disability, he is passionate about addressing intersectional issues related to poverty, health, and access to economic opportunity. Through his startup, Source Development Hub, Billy has had the opportunity to work with multiple regional and national non-profit organizations, including the Urban Institute and Corporation for Supportive Housing, on projects mapping affordable housing throughout Connecticut.
Most recently, Billy served as the Director of Data Analytics and Impact at the Housing Collective, a regional nonprofit focused on collective impact work spanning the homelessness services and affordable housing sectors. His work there included the development of a Housing Innovation Lab to foster tech-focused interventions aimed at understanding and addressing homelessness and affordable housing. Complementing his professional work, Billy advocates for disability rights at the municipal level by chairing the New Haven Commission on Disabilities and at the national level through the Osteogenesis Imperfecta Foundation. He additionally consults for MIT Solve, a social innovation marketplace, on social impact data modeling.
Billy holds Bachelor’s degrees in biology and history from MIT as well as an MBA from the Yale School of Management. We are excited to welcome Billy as a member of the OIF Board of Directors!
Nominate an OIF Board Member
The OI Foundation is always seeking nominations for new members of the OIF Board of Directors. The Board Development Committee looks for nominees with qualities such as a personal connection to OI and experience in areas including accounting, finance, fundraising, organizational management, public relations, strategic planning, business and/or law. If you or someone you know is committed to achieving the mission of the OI Foundation please contact the OIF at bonelink@oif.org.
Without our members, the OI Foundation could not be the resource the OI community has come to rely on. From funding deserving research projects, to creating support groups, establishing regional and national conferences, and hosting fundraisers, we need your help!
OIF member Jessica Sheridan shared why being a member of the OI Foundation is so important to her and her family in the interview below.
What is your relationship with OI?
My daughter was diagnosed with OI in 2012, 6 weeks after she was born. It was spontaneous, rather than genetic, and at that time we knew no one with OI and had no prior knowledge of what it was. We were put in contact with the OIF, which was a wonderful experience because the resources we were able to utilize and the people we met (both staff and other families) helped us cope and navigate the diagnosis as first-time parents. I wanted to learn more and more about how best to help my child but, in the meantime, I found this network of people who devoted themselves to spread awareness about this rare disease and worked continuously to develop creative ways to raise funds to help the community.
Why is membership in the OI Foundation important to you?
I am constantly amazed by all of the hard work and dedication that goes into all of the events that the OIF community plans, and all of the ways the OIF helps the OI community. At the heart of it all is a dedicated network of people working together to help support those living with OI, which is a cause near to my heart, of course. I have such gratitude for all of the people who care about my daughter. Not to mention, the community is so positive. When you have a loved one with OI it can be difficult, but knowing that there are so many people working together to help and who care is amazing.
Have you ever attended an OIF meeting/ conference/event?
I have yet to attend a conference, but when my daughter was young we planned golf outings in Michigan and Illinois for a few years, which will always hold very special memories to me.
Is there any advice you would give to a new family/member of the OI Community?
When things in life seem unexpected, it can feel very confusing and scary. However, the most difficult parts of life also happen to be the most wonderful opportunities to experience immense love, compassion, and kindness from others. There are so many people to lean on in this community, and people who care and want to help you on this journey we are all traveling together. Don’t feel that you are alone. Reach out to others, don’t be afraid to ask for help and use invaluable resources such as the OIF to help assist you. Go to an event if you can and meet people, or plan an event and watch people come out in droves to show you love and support. There are so many of us out here who are now part of your tribe!
What upcoming OIF program are you most looking forward to and why?
I love hearing about all of the many ways people all over the country are continuously working together to spread awareness. I love the Bone China Tea. I love reading about new grant opportunities and new medical research. It gives me a lot of hope for the future.
The future of the OI Foundation depends on you! We count on the support of our members to help fund research, provide information and support, develop new resources, expand support groups and increase public and professional awareness about OI. Without you, the vision for the OI Foundation once had by a group of parents in 1970 would not have become the resource it is today. From funding deserving research projects, to creating support groups, establishing regional and national conferences, and hosting fundraisers, you’ve been with us through it all.
Please consider becoming a member of the OI Foundation by visiting www.oif.org/membership.
OI Research Update:
Abnormal lung function in osteogenesis imperfecta due to both intrinsic and extrinsic causes
Gochuico et al. (2023) J Med Genet May 16:jmg-2022-109009. Doi:10.1136/jmg-2022-109009
Lung disease is the major cause of illness and death in individuals with osteogenesis imperfecta (OI), a collagen-related bone fragility disorder. Previously, external factors such as scoliosis and chest wall deformities were considered responsible for abnormal lung function in OI. Prior data from the NIH USA OI Research Program lead by Dr Joan Marini showed that pulmonary function declined with age even in children who did not have scoliosis, suggesting an intrinsic component for OI lung disease (Thiele et al, Human Mol Genet. (2012) 21(16):3535-45), that is, a defect directly in the respiratory system itself.
In this investigation, we studied 37 children and young adults with several types of OI, 29 of whom have structural mutations in type I collagen. Type I collagen is a component of lung parenchyma as well as the major matrix protein of bone. Study participants underwent lung function tests, X-Rays and CTs of lung tissue. Most patients had restrictive lung disease and decreased gas exchange, independent of scoliosis. Analysis of chest scans and breathing tests showed thickening of the walls of small airways and lung tissue abnormalities. We conclude that OI also causes intrinsic lung disease that negatively impacts Quality of Life (QOL) in OI. Further study of intrinsic lung abnormalities may lead to improved treatment options and improve QOL.
Click here to view the full article.
Thank you, Dr. Francis Glorieux, for more than 10 years of service as the Chair of the OIF’s Medical Advisory Council (MAC)!
As Chairman, Dr. Glorieux led the OIF Medical Advisory Council and volunteered his time and expertise to review OI Foundation publications, advise the OI Foundation on new research, speak at OIF events and conferences, and answer questions from the OI community. We are so thankful to Dr. Glorieux for his leadership and his commitment to children and adults living with OI. We are pleased to share that Dr. Glorieux will continue to serve as a member of the OIF’s Medical Advisory Council and the OIF’s Board of Directors. The OIF continues to be so grateful to Dr. Glorieux for all he does for the OIF and the OI community.
Click here to learn more about Dr. Glorieux.
Calling all OI community members in the Midwest!
Ultragenyx Pharmaceutical Inc. and Mereo BioPharma Group today announced data from the dose-selection Phase 2 portion of the Phase 2/3 Orbit study, showing that setrusumab significantly increased bone production in OI-affected patients after only 3 months.
Click here to read the full article.
On June 5th, the Foundation received the following communication from Ultragenyx regarding the interim data of their Phase 2 study, Orbit.
Dear OI Advocates,
As our trusted partner in OI, we are excited to share with you an important update about the Orbit study, NCT05125809, on behalf of the Ultragenyx OI study team. As you may be aware, Ultragenyx is sponsoring Orbit, a global study to determine the safety and efficacy of setrusumab, UX143, in the treatment of OI. Setrusumab is a fully human monoclonal antibody that inhibits sclerostin. Sclerostin is a protein that causes decreased bone formation and increased bone resorption. By inhibiting sclerostin, the goal of setrusumab is to increase bone formation, strength and bone mineral density and, to a lesser extent, decrease bone resorption.
Orbit is a randomized double-blind placebo-controlled Phase 2/3 study in OI types I, III, IV patients aged 5 to <26 (N=219). Enrollment in the Phase 2 portion of the study was completed in February with 24 patients. Patients received setrusumab at one of two doses to determine the optimal dosing strategy for Phase 3. We are pleased to announce the interim results from Phase 2 portion of the Orbit study. Data from the pediatric cohort suggests a substantial benefit on bone formation within 3 months on setrusumab.
Across all patients evaluated, setrusumab significantly increased levels of serum P1NP, a marker of bone formation, and a significant and rapid bone-building effect in the lumbar spine. There have been no treatment-related serious adverse events observed in the study. Reported adverse events have been consistent with the anticipated safety profile for setrusumab based on previous trial and include infusion-related reactions, headache, and sinusitis. There were no safety-related differences observed between dosing groups or age groups. “It’s encouraging to see similar lumbar spine bone mineral density results at 3 months in children to what we saw in adults at 12 months using the same dose levels,” said Eric Crombez, M.D., chief medical officer at Ultragenyx. “We believe it suggests that growing bones are more dynamic, and we anticipate a greater effect on bone formation and strength in the younger subjects with immature skeletons.”
Having this data allows Ultragenyx to move forward to the pivotal Phase 3 portion of the global study. Phase 3 will include approximately 195 participants, randomized 2:1 to receive setrusumab or placebo. We are grateful to the patients, parents, and caregivers who contributed to this study. We couldn’t do any of this work without the support from the OI community! To learn more about Patient Advocacy at Ultragenyx and our commitment to the OI community, including the upcoming Phase 3 trial, please visit https://ultrarareadvocacy.com/conditions-we-study/osteogenesis-imperfecta-oi/ or reach out via patientadvocacy@ultragenyx.com.
Thank you all for your support and trust in this work.
Sincerely,
Jenny McCue
Jenny McCue, Executive Director OI patient advocacy and engagement
