OI Research Announcement: Use of clear aligners…

The OI Foundation would like to bring your attention to a research study being conducted by the Brittle Bone Disorders Consortium:
Please call/email to see if you are eligible to participate or have any questions.

Bethesda, MD area:  National Institutes of Health
Danielle Elangue danielle.elangue@nih.gov 301-771-1378

Los Angeles, CA area: UCLA
Hannah Ebbers HEbbers@mednet.ucla.edu 310.794.6420

For more information about current studies through the Brittle Bones Disorders Consortium (BBDC), visit the BBDC webpage.


 

OIF Employment Opportunities

 

The OI Foundation is seeking to fill the following roles: Development Coordinator and Manager of Health Education. Please see below for more information.

Manager of Health Education
A full-time position focused on providing information and resources to families and individuals living with osteogenesis imperfecta, their loved ones and medical professionals.

The Osteogenesis Imperfecta Foundation has an opening for a manager of health education to help promote and improve the health and quality of life of people living with this rare genetic disorder by providing medically verified information and creating new educational programs in a variety of formats. Visit www.oif.org for more information about OI.

You would be joining a team of professionals dedicated to the mission of the OI Foundation and the people we serve. The open position is based in the OI Foundation’s national office in Gaithersburg, Maryland and offers a generous benefits package with three days per week remote work option.

Responsibilities
The Manager of Heath Education will answer questions about OI and serve as a resource to the patient and professional communities. The Manager of Education will oversee education programs and resources including virtual and in-person clinic town hall meetings, held twice annually, mutual support programs for patients, and online educational resources which include toolkit and one-page factsheets.

Duties

  • Prepare and distribute educational materials that reflect the many needs of people with OI
  • Prepare, update, and distribute education materials for a variety of medical professionals including physicians, nurses and social workers including toolkits and factsheets
  • Maintain databases including the clinic directory, mailing lists, telephone networks and other information to facilitate the functioning of the health education programs.
  • Monitor OIF social media sites to ascertain types of information constituents are seeking and engage when appropriate.
  • Represent OIF at meetings and activities as assigned that will increase the visibility of the organization
  • Make recommendations on innovative ways to reach various parts of the OI community – webinars, etc.

Qualifications

  • Excellent oral and written communication skills.
  • Excellent organizational skills and ability to manage multiple ongoing tasks
  • Must be able to work in a team environment.
  • Travel will be required 2-5 times per year
  • Position will allow for three days per week remote work and two days in-office at the Gaithersburg, MD office
  • Ability to respond with empathy and professionalism to community and stakeholder inquiries
  • A Bachelor’s Degree and two years of experience, or equivalent work experience, preferred

The Osteogenesis Imperfecta Foundation is an Equal Opportunity Employer. Prospective employees will receive consideration without discrimination because of race, color, religion, gender, national origin, age, disability, marital or veteran status, sexual orientation, or any other legally protected status. Join us as we work together to find new and improved treatments for people living with OI.

To Apply
Questions, resumes and CVs should be sent to: bonelink@oif.org.

 


Development Coordinator

A full-time position focused on bringing in new revenue through donor relations, direct mail campaigns, corporate sponsorships, grass roots volunteer events and a nationwide signature fundraising event program.

Join the Osteogenesis Imperfecta Foundation as a fundraiser to help us raise revenue and increase awareness of this rare genetic disorder. Visit www.oif.org for more information on OI.

The open position is based in the OI Foundation’s national office in Gaithersburg, Maryland.

Description
This position will work with the Director of Development to plan and carry out fundraising events and educational programs in support of the OI Foundation’s mission. This position is responsible for managing fundraising communications including the online events calendar, donor recognition and stewardship activities, assisting the Director of Development with executing nationwide gala-type events in multiple markets, and assisting with the coordination of annual direct mail campaigns. The right candidate for this position must be a strong team player who is self-motivated, an outstanding communicator and must possess excellent fundraising or sales skills.

Key responsibilities include:

  • Assist with execution of fundraising galas and educational program meetings in multiple markets
  • Provide support for volunteers organizing local fundraising events
  • Manage online event calendar and donation pages
  • Assist with the coordination of direct mail campaigns
  • Assist in the cultivation and solicitation of individual and major gifts
  • On-site support at fundraising events and educational program meetings

Qualifications
Qualified candidates should have excellent communication and organizational skills with evidence of ability to plan and complete tasks, focusing on accuracy and deadlines. A high comfort level in personal contact and direct solicitation/sales is strongly suggested, experience with galas or fundraising dinner events is a plus. They should be familiar with fundraising software and should be able to travel up to 25% of the time.
Additional requirements include:

  • A Bachelor’s degree is preferred
  • One year of similar work experience
  • High level of computer literacy, including proficiency with MS Office and familiarity with online databases and design programs
  • Proven track record of recruiting volunteers
  • Excellent organizational skills and high attention to detail
  • Self-starter, demonstrating initiative and creativity

The Osteogenesis Imperfecta Foundation is an Equal Opportunity Employer. Prospective employees will receive consideration without discrimination because of race, color, religion, gender, national origin, age, disability, marital or veteran status, sexual orientation, or any other legally protected status. Join us as we work together to find new and improved treatments for people living with OI.

To Apply
Questions and resumes should be sent to: mbonardi@oif.org.

Michael Geisman Fellowship Grant – Applications Now Available

Michael Geisman Fellowship Grant

The Michael Geisman Fellowship Grant program awards funding to post-doctoral trainees who are currently working on projects with clear relevance to osteogenesis imperfecta (OI), or who have projects that will enable them to develop expertise in OI research.

Applicant Requirements:

  • Applicant must hold an MD, DDS, DO, or PhD, and be appointed at the level of a post-doctoral trainee, or equivalent, within an academic institution.
  • Applicant should have completed their Ph.D. or clinical training within the past five (5) years.

Fellowship Guidelines:

  • Michael Geisman Fellowship awards provide up to $50,000 per year. It is the intention of the OI Foundation that grant monies be used to fund actual costs related to the research being performed including Fellow salary, fringe benefits, and supplies.
  • Fellowship awards are for one year; a second year of funding may be approved based upon satisfactory performance during the first year of funding.
  • Research must be done under the supervision of mentor with training and experience in osteogenesis imperfecta research or research in a related field.

How to Apply:

  1. Complete application (pg. 2-8)
  2. Mentor of applicant must submit a copy of his/her NIH biosketch and a letter of recommendation on behalf of the trainee, which also confirms that the mentor will supervise the trainee’s research.
  3. Applications require two additional letters of recommendation from scientists or clinicians who can comment upon the applicant’s training, ability, and potential to develop expertise in OI research.
  4. Submit application, reference letters, and mentor biosketch as PDF documents to sconnors@oif.org NO LATER THAN November 30, 2022.

If you have any questions, please contact Stacie Connors at sconnors@oif.org.

 

Click here for the 2022 Michael Geisman Fellowship application.

OI Research Update: Longitudinal Study

BBDC Research Update: Longitudinal Study

On September 22, 2022, the OI Foundation was joined by Dr. Reid Sutton (Geneticist at Baylor College of Medicine, Administrative Director and Principal Investigator of the Brittle Bone Disorders Consortium, and member of the OIF Medical Advisory Council and Board of Directors) to discuss the Longitudinal Study of Osteogenesis Imperfecta. This study, also known as the Natural History Study, is the largest research project ever conducted on people with OI. Dr. Sutton discussed the design of the study, its goals, and what researchers have learned so far. Watch this session recording below.


Participate in the Longitudinal Study of OI!
The purpose of this natural history study is to perform a long-term follow-up of a large group of people with osteogenesis imperfecta (OI). Information collected will include medical history, number of broken bones, surgeries done, medications taken, ability to walk, pain, lung function and breathing, hearing, and bone mineral density. The overall goal is to improve the health and quality of life of people with OI. Click here to learn more and determine if you are eligible to participate.

OIF Regional Conference: Kansas City, MO

Save the Date! OIF Regional Conference: Kansas City
Saturday, November 5, 2022
The OIF is excited to announce the next Regional Conference will be held in Kansas City, Missouri, on November 5! This 1-day meeting will be co-chaired by Dr. Eric Rush and Dr. Jean-Marc Retrouvey and will be held at the Embassy Suites by Hilton Kansas City Plaza. Speakers will present on topics related to understanding and treating OI and will address pediatric and adult health concerns. More information and registration will be available at www.oif.org/event/regionalkc.