Loading....
Fundraiser Page Name
Fundraiser First Name Fundraiser Last Name
Join Us In Pursuit of a Cure for FOP!
The IFOPA is the International Fibrodysplasia Ossificans Progressiva (FOP) Association. Their mission is to:
- Fund research to find treatments and a cure for FOP
- Support FOP families
- Raise awareness worldwide
- Advocate for those with FOP, their families and caregivers
FOP is one of the rarest, most disabling genetic conditions known to medicine. It causes bone to form in muscles, tendons, ligaments and other connective tissues. In people with FOP, bridges of extra bone develop across joints, progressively restricting movement and forming a second skeleton that imprisons them in bone. There are no other known examples in medicine of one normal organ system turning into another.
Thank You to Our Donors Helping
Pursue a Cure for FOP!
In Pursuit of a Cure - Investing in Every Path to Hope will help fund phase 3 of gene therapy research at UMASS but it will also provide critical funding to one of the most progressed clinical trials for FOP - STOPFOP, a drug trial being held in The Netherlands, Germany and the United Kingdom testing a drug called saracatinib. Before the trial, when tests were still being done in mice, saracatinib appeared to
- prevent or lessen flares, one of the most painful and stressful symptoms of FOP
- stop misguided cells from mistakenly becoming bone cells resulting in the growth of extra bone throughout the body
Gene Therapy represents an exciting approach to treating FOP but, while it holds great potential, gene therapy technology is currently limited. This is why traditional drug trials are still needed. By funding the STOPFOP clinical trial to test saracatinib and continuing to fund gene therapy for FOP, the IFOPA is caring for those with FOP today, tomorrow and in the future.
We won’t stop until there is a cure. Please join us as we continue to grow FOP research and move forward on the path toward treatments and a cure. Your support in any amount will help us start off strong. And the first $55,000 in donations will be matched dollar for dollar.
Thank you for joining us In Pursuit of a Cure 2022 with your gift today!
I hope you’ll attend a special virtual event In Pursuit of a Cure - Investing in Every Path to Hope on September 29 or 30 (select the viewing time that works best for you). This live broadcast (available on Facebook or YouTube) will be an exciting evening in support of expanding FOP research. It’s a virtual event, so you can take part from the comfort of your home!
There’s one other way you can help In Pursuit of a Cure! Invite your friends and family to watch. Simply email Cathryn Roys, Fundraising & Special Projects Manager, at cathryn.roys@ifopa.org and she’ll get you what you need.
For more information about the In Pursuit of a Cure 2022 Campaign, visit ifopa.org/curefop. Please help me transform the lives of people living with FOP and their loved ones.
Organization Name
Org Address Line 1
Org City, Org State Org Zip
Need help? Org Email
Fundraiser First Name Fundraiser Last Name
Join Us In Pursuit of a Cure for FOP!
The IFOPA is the International Fibrodysplasia Ossificans Progressiva (FOP) Association. Their mission is to:
- Fund research to find treatments and a cure for FOP
- Support FOP families
- Raise awareness worldwide
- Advocate for those with FOP, their families and caregivers
FOP is one of the rarest, most disabling genetic conditions known to medicine. It causes bone to form in muscles, tendons, ligaments and other connective tissues. In people with FOP, bridges of extra bone develop across joints, progressively restricting movement and forming a second skeleton that imprisons them in bone. There are no other known examples in medicine of one normal organ system turning into another.
Organization Name
Org Address Line 1
Org City, Org State Org Zip
Need help? Org Email
Thank You!
Thank you for your generous support of IFOPA research. Please share my fundraiser with your friends and family!
I hope you will join us on September 29 or 30 for the special virtual event in support of expanding FOP research. Choose from any of the times below:
September 29
- 7 pm Eastern (United States, Canada and Latin America)
- 9 pm Eastern (United States, Canada and Latin America)
September 30
- 6 am Eastern / 8 pm AEST/ 6 pm HKT / 6 pm CST (Australia, New Zealand and Asia)
- 2 pm Eastern / 7 pm BST (United Kingdom, Europe, the Middle East and Africa)
Fundraiser First Name Fundraiser Last Name
Join Us In Pursuit of a Cure for FOP!
The IFOPA is the International Fibrodysplasia Ossificans Progressiva (FOP) Association. Their mission is to:
- Fund research to find treatments and a cure for FOP
- Support FOP families
- Raise awareness worldwide
- Advocate for those with FOP, their families and caregivers
FOP is one of the rarest, most disabling genetic conditions known to medicine. It causes bone to form in muscles, tendons, ligaments and other connective tissues. In people with FOP, bridges of extra bone develop across joints, progressively restricting movement and forming a second skeleton that imprisons them in bone. There are no other known examples in medicine of one normal organ system turning into another.
Organization Name
Org Address Line 1
Org City, Org State Org Zip
Need help? Org Email