Merritt Engel published Regeneron Pharmaceutical Releases Results of Phase 2 of the LUMINA-1 Trial in FOP News 2020-01-09 11:09:46 -0500
Merritt Engel published Successful Biobank Collection in Florida in IFOPA News 2019-12-20 16:54:15 -0500
FOP Biobank an invaluable resource for FOP researchersRead more
Merritt Engel published Get an Inside Look at the 2019 FOP Drug Development Forum in IFOPA News 2019-12-17 10:51:15 -0500
Learn more about FOP Talks given by experts from around the worldRead more
Merritt Engel published An Important Update from Ipsen Regarding the Palovarotene Trial for Children Under 14 in FOP News 2019-12-13 10:01:04 -0500
Merritt Engel published Important Announcement about the MOVE Trial for Children Under 14 in FOP News 2019-12-13 09:57:31 -0500
Merritt Engel published IFOPA Announces Record-Breaking ACT (Accelerating Cures and Treatments) for FOP Grant Funding in IFOPA News 2019-12-05 11:48:49 -0500
IFOPA Announces Record-Breaking ACT (Accelerating Cures and Treatments) for FOP Grant FundingRead more
Merritt Engel published A Father and his Company Give to Advance Research in IFOPA News 2019-12-16 10:27:50 -0500
An extraordinary $50,000 gift to benefit FOP researchRead more
The International FOP Association (IFOPA) maintains a FOP biobank on behalf of the FOP research community. Donated samples from people with FOP, and from control donors, are stored in the Biobank at Vanderbilt University Medical Center for redistribution and use by academic and industry researchers. It is the IFOPA’s goal to place these samples into the labs of qualified researchers who will further our knowledge about FOP and accelerate the development of new treatments.
View the list of available samples.
Samples are being added to the FOP Biobank on a continual basis. Please check back to view the latest available samples.
The Acquisition Process
To acquire biospecimens from the FOP Biobank, please complete a FOP Biobank Request Form. The Request Form will be reviewed by a Scientific Review Committee for scientific merit, research impact, feasibility and availability of appropriate biosamples.
Approved applicants will be sent a Uniform Biological Material Transfer Agreement (UBMTA) that must be signed by the principal investigator (PI) and receiving institution prior to sample release. The PI is responsible for obtaining any necessary Institutional Review Board (IRB) approvals or waivers, as required by their institution.
Once all documents are received by the IFOPA, the FOP Biobank will be notified of the aliquots to be shipped and will communicate directly with the PI to coordinate delivery. As part of the UBMTA, investigators will be required to provide a final scientific report or a publication to the IFOPA and notify the IFOPA of any additional publications.
The IFOPA welcomes the opportunity to partner with sponsors of clinical trials or research studies to collect biosamples and donate the materials to the FOP Biobank. These biosamples will be made available for access to qualified researchers and distribution governed through a Scientific Review Committee. Please contact Adam Sherman if you are interested in partnering with the IFOPA.
SPONSORSHIP & ACKNOWLEDGEMENTS
The IFOPA oversees the FOP Biobank on behalf of the FOP research community thanks to generous support from Blueprint Medicines, Ipsen and Regeneron Pharmaceuticals.
We thank the invaluable in-kind support that has been provided by Margo Black (Vanderbilt University) and Drs. Charles Hong (University of Maryland), Ed Hsiao (University of California, San Francisco), Dan Perrien (Emory University), Bob Pignolo (Mayo Clinic), Eileen Shore (University of Pennsylvania), and Yan Ru Su (Vanderbilt University).
Merritt Engel published Save the Date for A Transatlantic Burns Supper Fundraiser in IFOPA News 2019-11-24 22:58:07 -0500
Special fundraiser comes to the United States for the first timeRead more
Merritt Engel published FOP Drug Development Forum and Family Gathering Come Together in Orlando in IFOPA News 2019-11-22 13:06:54 -0500
A Special Week of Meetings Further Unites the FOP CommunityRead more
The IFOPA is excited to add the Ability Toolbox Program to the list of Family Service programs in 2019. The focus of this program is to empower individuals with FOP by promoting independence through the use of tools and home adaptations.
Ways the Ability Toolbox Program Can Support You
INCREASING opportunities for independence and promoting higher levels of confidence.
ASSISTING community members with developing sustainable daily habits that promote decreased reliance on caregivers, and balance in the lives of families affected by FOP.
EMPOWERING people to solve problems by creating tools designed to meet their own unique needs.
Watch These Video Resources from the Ability Toolbox Program
The Ability Toolbox Presentation from the 2019 Family Gathering in Orlando, Florida is now online! Hear the FOP community member panelists discuss tools they use every day to maintain their independence during daily routines. See examples of a few tools from these different categories: Eating and Cooking, Toileting, Bathing/Showering, Dressing and Grooming, School and Workplace, Recreation and Hobbies, Medical and Preventative Tools, and Adaptations Around the Home. View the presentation here!
Learn about the importance of oral health and its impact on overall well-being in this FOP-specific dental webinar from the Ability Toolbox program. Hear recommendations from FOP dental expert Dr. Clive Friedman for preventative dental care during infancy, childhood, adolescence, and adult stages of living with FOP, including complications such as ankylosis of the jaw. Learn how FOP impacts your risk for oral disease, and view various tools and products that can assist you in decreasing those risks. Watch the recorded webinar here!
**The webinar was recorded live in English but can be viewed with translated subtitles.
Get Involved in the Ability Toolbox Program
Watch for our weekly posts on social media to see featured tools and tips for staying independent during daily routines.
- Watch videos of community members demonstrating various tools on our YouTube channel.
- Learn from our larger FOP community as they share their feedback and recommendations at small in-person meetings and larger Family Gathering presentations in the US and around the world.
- Speak with the Family Services Coordinator, or one of our Tool Ambassadors, to have your questions about tool integration and home adaptations answered. Call +1 (913) 558-1879 or email Karen Kirchhoff, Family Services Coordinator, to learn more about the Ability Toolbox program.
See What the Ability Toolbox Program Accomplished in Its First Year
The Ability Toolbox Program was launched in 2019 with generous funding from The Radiant Hope Foundation, Regeneron Pharmaceuticals, Ipsen and Blueprint Medicines. The program made major strides in its first year. Click here to read all about it.
Coming Soon! A New Online Guidebook!
We're creating a new Online Guidebook featuring both manufactured tools, as well as homemade tools submitted by FOP community members. The Guidebook will be continuously updated with the latest tools that FOP community members find useful in their day-to-day lives.
Do you have a tool that you would like to share with the FOP Community? Email Karen Kirchhoff family services coordinator.
The Ability Toolbox program is made possible by grants from The Radiant Hope Foundation, Ipsen, Regeneron Pharmaceuticals, and Blueprint Medicines.
SPONSORSHIP & ACKNOWLEDGEMENTS
The IFOPA is able to offer Ability Toolbox: Everyday Tools for Independent Living thanks to generous support from the Radiant Hope Foundation, as well as Regeneron Pharmaceuticals, Ipsen and Blueprint Medicines.
Merritt Engel published An Important Announcement from Blueprint Medicines & Ipsen in FOP News 2019-11-04 11:01:42 -0500
Ipsen and Blueprint enter exclusive agreement in FOPRead more
Success of Beloved Annual Event is Inspiration for Other FOP FundraisersRead more