Hayden's Hope

Sunday, July 27, 2014

Clementia Pharmaceuticals received U.S. Orphan Drug Designation for Palovarotene for the treatment of FOP.

The news just keeps getting better!  

"The IFOPA is pleased to share news, that Clementia Pharmaceuticals received U.S. Orphan Drug Designation for palovarotene for the treatment of FOP. This designation does not impact the clinical trial that is taking place for our FOP community. Please visit the IFOPA’s Drug Development page to download and read the entire announcement and other information about the palovarotene clinical trial by clicking on this link http://www.ifopa.org/drug-development.html. "

Clinical Drug Trial Announcement

An amazing day!!

July 14th was a historic day in the FOP community. We at the IFOPA are thrilled to see Clementia’s trial start. This is a time of great hope in our community. Amidst the excitement, it’s important to remember that a clinical trial is NOT a treatment. As the Penn team said in their 2014 (23rd) annual report, “… clinical trials should not be viewed as clinical treatments, but rather as well-controlled and well-supervised experiments in which a patient is putting himself or herself at risk to determine if there is potential benefit to the drug under study.”

To get more information about Clementia’s Phase 2 trial, please read their list of frequently asked questions (FAQs), which you can find on the IFOPA’s new Drug Development page http://www.ifopa.org/drug-development.html

Hayden's Hope Awarded Jeannie Peeper Outstanding Community Involvement Award

Outstanding Community Involvement Award is presented to an organization, family or individual of promoting and maintaining a high standard of FOP community involvement that includes fundraising and/or awareness activities. To be eligible for this award, a major fundraising project must have been completed or exceptional FOP community service performed within the past five years.

Selection criteria are:
- Organized major fundraising or program-related activities to benefit the IFOPA in the past five years.
- Innovation and creativity in solving a problem or meeting a need in the FOP community.
- Encourages and engages in FOP volunteerism in the community.
- Has developed creative fundraising or awareness solutions that may serve as a model for others.
- Encourages and motivates others to assume leadership roles in philanthropy and increase community involvement.  

Hayden's Hope for FOP Research
Hayden at his 8th Grade Graduation June 2014
"Hayden's Hope was inspired by its namesake, Hayden Pheif, an adorable young boy who is now an amazing teen with FOP.  Hayden's Hope was started by Hayden's mother and father, who led fundraising efforts in Northern California with the help of many relatives and friends.  Year after year, Hayden's Hope provided significant revenue, which isn ow close to one million dollars in total donations.  These donations propelled the IFOPA mission forward.  All their efforts have helped bring FOP awareness to the forefront and these funds have significantly advanced FOP research.  Today, Hayden's Hope continues its efforts on-line with website and blog, while still raising awareness and funds for research and other IFOPA programs. "