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. " 

Thursday, June 26, 2014

25th Anniversary of the International FOP Association

Fibrodysplasia Ossificans Progressiva (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. Bridges of extra bone develop across joints, progressively restricting movement and forming a second skeleton that imprisons the body in bone.  

In the US, a disease is considered rare if it is believed to affect fewer than 200,000 Americans. Currently there are 285 confirmed cases of FOP  in the United States and 800 cases world wide. 

In 1988 the International FOP Association (IFOPA) was started by one amazing person afflicted with FOP, Jeannie Peeper.  

As a young woman, Jeannie knew that there must be other people with her condition out there and wanted to be able to connect with them.  

For someone with a rare disease isolation is typical, however Jeannie persevered and started a pen pal group with the few people that she knew also had FOP.

Through Jeannie's efforts and those of numerous volunteers, today there are 500 members of the IFOPA worldwide representing over 50 countries.  

Through Jeannie's vision, today the IFOPA provides education, member support, advocacy and research funds to the FOP lab at University of Pennsylvania.  In 2006, the lab at University of Pennsylvania discovered the FOP gene  and today continues to do groundbreaking research on the quest to find a cure for FOP.

Hayden's Hope is proud to fundraise on behalf on the International FOP Association.

Please click here to read an exclusive and amazing interview with Jeannie Peeper, the founder of the IFOPA.  
Jeanie Peeper, founder of the IFOPA  and Dr. Frederick Kaplan, head of the FOP Lab

Sunday, June 15, 2014

Tis the season

One of the proudest moments of being a parent is watching our children graduate, whether from kindergarten, 5th grade, 8th grade, high school, college and for some even grad school.......of course by that time you're broke and proud :)

This past week Hayden graduated from 8th grade at Mount Tamalpais School.  Three years ago, if you had told me that this lifetime milestone would happen to him, I would tell you that sadly it probably wouldn't.    However, as usual, Hayden surprised us all and is going on to high school with a big, big smile on his face.

Post Ceremonies Smile
Hayden's life has been blessed with so many wonderful people….family, peers, teachers, doctors and nurses who all care for his wellbeing and urge him forward in life.    

However, Hayden's best blessing these last three years has been his friends.  They all have been there for him unconditionally and treat him as he wants to be treated….just like a normal teenager.   These amazing kids appear at his side when we walk into an event and take charge. His oxygen tank is taken out of my hands and “Come on Hayden, we’re all over here” and off he goes to hang out with his buddies.  Every time this happens I have to hold back the tears of joy of how blessed he is to have these wonderful friends in his life.

On Graduation day, unbeknownst to me, I learned that Hayden had stubbornly talked his nurse and teachers into told his nurse and teachers that he was going to walk across the stage to get his diploma by himself and not only that, but he was going to walk down the isle at the end of graduation by himself.  Once again his friends and teachers where there to support him and make this happen for him.
                             Video of Hayden receiving his Diploma.
Walking from the stage with Eric Kielich, MTS teacher.

I feel like I am always saying this, but Hayden always is surprising me with his stubbornness, perseverance and determination which are his most inspiring qualities.   He continues to amaze me with how he chooses to live his life.

Congratulations Hayden on an amazing graduation….on your terms.  We are so very proud of you!

Friday, May 16, 2014

Elsa's Amazing Birthday Present to Hayden

Your children can surprise you in the most amazing ways and at the most unexpected times.  Thank you Elsa Lilli for making Hayden's birthday that much more special. Click on the link below to see Elsa's birthday present to Hayden.

14 Years Ago on May 15th

14 years ago today, the most amazing person came into my life. Hayden was born at 7:30 am , the day after Mother's Day and had oddly shaped big toes.  Little did I know that just a few years later his toes would lead to a diagnosis of a very rare disease called FOP, which would not only change my life forever, but teach me to be a better person.

Hayden has taught me to laugh when time are tough, cry when they are just too tough to laugh about and live each day as it comes.  

He has taught me to persevere and to be stubborn, all in the name of living as normal a life as possible.

Hayden has showed me the value of friendships beyond what I had ever previously thought.  

But most importantly, Hayden has taught me that the most important thing in life is to be happy.  

Hayden you are an inspiration to me every day and always will be. 

I love you.  

Happy 14th Birthday!