The OI Foundation hosted a second COVID-19 Vaccine Q&A on Thursday, February 11, 2021 at 6:00pm ET. Drs. Bottazzi, Lee, and Sandhaus shared updates on the COVID-19 vaccines and answered questions from OI community members. Discussion topics included anticipated new vaccines, social-distancing in 2021, and more.
Meet the Speakers
Maria Elena Bottazzi, PhD – Associate Dean of the National School of Tropical Medicine, Professor of Pediatrics, and Co-Director of Texas Children’s Center for Vaccine Development at Baylor College of Medicine. She is an internationally recognized vaccinologist, has published over 150 scientific papers, and co-chairs the New Vaccines and Therapeutics Taskforce of the Lancet Commission on COVID-19.
Brendan Lee, MD, PhD – Robert and Janice McNair Endowed Chair in Molecular and Human Genetics, Professor and Chairman, Department of Molecular and Human Genetics, Baylor College of Medicine
Robert A. Sandhaus, MD, PhD, FCCP – Pulmonologist, National Jewish Health
On March 1, OIF CEO Tracy Hart and OIF Medical Advisory Council member Robert A. (Sandy) Sandhaus, M.D., Ph.D. will participate as panelists during the session titled ‘How Care and Research Have Changed During COVID-19‘ at the National Institutes of Health (NIH)#RareDiseaseDay event.
If you are hoping to receive a COVID-19 vaccine, the OI Foundation has assembled the following resources and suggestions to help you advocate for priority vaccination status. The OI Foundation believes that people with OI should be included in the vaccine prioritization group that includes those with chronic lung disease such as COPD.
Since vaccine prioritization decisions are being handled differently by each state and are subject to change, community members are encouraged to research and advocate within their respective states.
Resource: Sample Vaccine Letter
OIF Medical Advisory Council member Dr. Robert Sandhaus MD, PhD has drafted a sample letterto be completed by your doctor to request early administration of a COVID-19 vaccine. While each state has a different process, we recommend addressing the letter to your state’s health department or a specific official or group within it that handles vaccination prioritization decisions. Links to all state health departments can be found here.
Resource: Research on Pulmonary Health and OI
The connection between chronic lung disease and osteogenesis imperfecta has been shown in multiple studies. You can share the following articles with your doctor and relevant parties.
Reviewing your State’s Health Department Guidance:
Review your state’s health department website to find the most relevant group, committee, or individual in charge of vaccine prioritization. Depending on what contact information you find, you may email this letter or physically mail it.
Determine what timeframe people with relevant medical conditions are intended to get the vaccine in your state. While the CDC has recommended that people with certain medical conditions should be considered for priority vaccination in “Phase 1C”, many states have their own timelines, phases, and terminology for when people can get vaccinated.
Remember that all vaccine information is subject to change. Your state may change their rules, and we encourage you to frequently check their website for updates.
Completing the sample letter with your doctor:
Talk with your doctor and ask if osteogenesis imperfecta can qualify you to receive priority vaccination in your state. If they are unsure, assume that your state has not yet released a list of conditions for priority vaccination or that it has not included OI in their guidelines yet. In either scenario, the sample letter may be a useful tool to help advocate for you and others with OI.
When applicable, include any diagnosed pulmonary health issues, regardless of their connection to OI, in your version of the vaccine letter referenced above. You can also mention whether you have other medical conditions that the CDC has identified as high risk beyond chronic lung disease connected to OI. Remember that this sample letter is just a template! Adding relevant information with your physician can help your letter become more persuasive.
Social Distancing and Vaccines
Please remember that even after you receive a COVID-19 vaccine, you will still need to social distance for some time. None of the vaccines are 100% effective and you still may infect others even though you experience lesser symptoms.
The OI Foundation will hosted an update to our COVID-19 Vaccine Q&A on Thursday, February 11 at 6pm ET to update the OI community on new COVID-19 developments.
Meet the Speakers
Maria Elena Bottazzi, PhD – Associate Dean of the National School of Tropical Medicine, Professor of Pediatrics, and Co-Director of Texas Children’s Center for Vaccine Development at Baylor College of Medicine. She is an internationally recognized vaccinologist, has published over 150 scientific papers, and co-chairs the New Vaccines and Therapeutics Taskforce of the Lancet Commission on COVID-19.
Brendan Lee, MD, PhD – Robert and Janice McNair Endowed Chair in Molecular and Human Genetics, Professor and Chairman, Department of Molecular and Human Genetics, Baylor College of Medicine
Robert A. Sandhaus, MD, PhD, FCCP – Pulmonologist, National Jewish Health
After much consideration, we have decided to make the 2021 OIF National Conference a virtual affair. The OIF Board of Directors, staff and medical professionals believe there’s still too much uncertainty surrounding travel and large gatherings, and letting this decision linger any longer could create unfair travel burdens or financial hurdles and those are the last things we want for our community.
The success we enjoyed in July with our first virtual National Conference made this decision even easier. Of the thousands who joined us from as far away as Australia, more than half of them were attending their very first conference. Now, we have a tremendous opportunity to build on that reach and amplify that success with expanded programming and even more community elements.
If all goes as planned, the 2022 National Conference at the JW Marriott Grande Lakes in Orlando will be in-person, but will also be available virtually, as will nearly all programming going forward.
We thank you for your understanding and patience as we navigate the Foundation through these unusual times. We’ll release more details in the coming months, but please don’t hesitate to reach out if you have any questions. The OI Foundation can be reached by phone at (844) 889-7579 or by email at bonelink@oif.org.
As the COVID-19 vaccine is slowly becoming available, your local health department determines how COVID-19 vaccines are distributed in your state. Each state is handling the distribution and determining eligibility differently. Listed below are the links to each state’s health department website with up to date information on where and how to receive the vaccine. Please work with your physician to decide if you will receive the vaccine.
In December, the OI Foundation spoke with a COVID-19 vaccine researcher and other experts to answer your questions about the COVID-19 vaccine. If you were unable to attend this session, please click here to watch the recorded session
To learn more about the availability of the vaccine and where to receive it in your area, please click the link for your state listed below.
The OI Foundation is making every effort to provide the most up-to-date information about the COVID-19 pandemic for the OI community. To view resources and updates from the OIF, please visit https://oif.org/category/covid19/.
NEW OPPORTUNITY! The Brittle Bone Disorders Consortium (BBDC) is currently accepting applications for pilot studies. For more information please refer to BBDC Pilot Study RFA or email Dianne Nguyen at diannen@bcm.edu.
Key Dates Application Due Date Extended to February 28, 2021
Earliest Start Date: April 1, 2021
Funding period: April 1, 2021 – April 30, 2022
Funding amount: Up to $15,000
To prepare for the OIF’s 50th anniversary, OIF Founder Gemma Geisman wrote a beautiful letter reflecting on the OI Foundation’s accomplishments and activities since 1970. Her daughter, Cathy, shared this letter with the OI community in Gemma’s Corner.
Gemma was creative, passionate, and a wonderful listener. She listened to learn about you, she listened to find out how to help you, and she listened because she cared about you.
Gemma’s Corner, created in memory of Gemma, encourages the OI community to keep sharing with each other, caring for each other, and providing support to one another.
For more information, or to share your story, please contact Jessica at jransome@oif.org.
The 21st annual Fine Wines Strong Bones Gala will be held on February 20, 2021 from 7:00-8:00pm ET. Please join us for a fun-filled evening that will include an online auction, live raffles, special video presentation, and the opportunity to fund the mission of the OI Foundation! You must be registered in advance on Zoom. Register today at www.oif.org/VirtualFineWines.
For more information, please contact Melissa Bonardi at Mbonardi@oif.org.
