YOUR DONATION IS CRITICAL
- 75% of the entire FOP research budget is provided by family and friends of FOP patients.
- The Single Greatest Thing you can do to eradicate FOP and preserve Sienna’s bright future is donate to support FOP research through Sienna’s Flower Garden on behalf of the IFOPA**
- The IFOPA is a registered 501(c)(3) charitable organization.
Why donate to fund FOP research?
The team of brilliant researchers at Penn Medicine, working with Dr. Frederick Kaplan at the McKay Orthopaedic Research Lab, are very close to finding effective treatments and ultimately a cure for FOP. This is not something that is just curable “someday” or “in our lifetime.” This is literally just a few years away, and your support could be the funds that push the team over the edge to win this battle. This is a truly exciting time in medical research and we would be eternally grateful if you become a part of it!!!
FOP is a rare disorder, but finding effective treatments for FOP will also benefit the much larger population of wounded military personnel and surgery patients suffering from heterotopic ossification, a painful and often debilitating abnormal buildup of bone tissue.
Additionally, it might be possible to harness the FOP gene, and create bone in a more controlled way where it is desperately needed such as in fractures that do not heal, surgical spine fusions, severe bone loss from trauma, osteoporosis, tumors, and congenital malformations.
Why Donate in honor of Sienna Otto?
100% of your donations “in honor of Sienna Otto” go to the IFOPA and are restricted to fund FOP research towards effective treatments and a cure.
Sienna is only two years old and doesn’t yet realize what she is up against. We hope that with your support she will never have to.
When they find the cure, the battle will be won, right?
Yes and no. The cure will be the ultimate win for current and future FOP patients, as well as the broader global community who are affected with common skeletal disorders such as osteoporosis, fractures and bone cancer. However, we need to continue to drive awareness so that FOP can be readily diagnosed and patients can receive proper treatment.
Sienna was not diagnosed until a month after her second birthday, despite having seen orthopedic experts for her toes since birth. Once her flare-ups began at 20 months, it still took 5 months for a diagnosis, after countless visits to specialists, dozens of blood tests and two MRIs requiring general anesthesia. As parents, we were very organized and aggressive in getting her appointments scheduled as soon as the next specialist was identified.
Thankfully, no biopsies were performed, but many FOP patients are not so lucky in their path to diagnosis. Our goal is to drive awareness to help identify all FOP patients early so no biopsies or surgeries are performed.
Sienna Says “Thank You”
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**Send a check if you prefer not to use Paypal but still want to help Sienna!
**Alternately, you can write a check to the “International FOP Association” and send it to the address below. If you could note on the check (or on a separate note with the check) that it is for Sienna Otto it will ensure that 100% of your donation is restricted to fund research towards effective treatments and a cure.