Tuesday, August 19, 2014

2014 Hayden's Hope Fundraiser Presents "Girls with Grit"

        F U N D R A I S E R

  girls with grit

             Girls With Grit Team            
          Team Leader: Liz Lawler
                   Megan Olsen
                  Monika Kaplan
                 Carol Tagliaferri
                      Julie Neff
                  Caroline Dowd
                     Erin Wendt
                    Bryn Powell
                  Deena Pontious
                   Lora Anderson

Date: September 19-20th
Twelve amazing women will be running the
Ragnar 24 Hour Relay from San Francisco to Napa Valley on behalf Hayden's Hope.

Hayden’s Hope raises funds to benefit the International FOP Association (IFOPA) for FOP RESEARCH & AWARENESS.  The IFOPA is a 501c3 non profit organization.

What is FOP?
FOP is one of the rarest genetic conditions known to medicine.  Currently there are 285 confirmed cases in the United States and 800 confirmed cases worldwide. This disabling genetic condition causes bone to form in muscles, tendons, ligaments and other connective tissues, progressively restricting movement and forming a second skeleton that imprisons the body in bone.

Fundraising for FOP
The annual budget of the FOP Research Lab is $1.5 million.  About $500,000 of that amount is provided by the IFOPA and is raised by donations and family fundraisers such as Hayden's Hope.

Facts about Hayden, FOP Research 
& the IFOPA
September 2002 – Hayden is diagnosed with FOP
November 2003 – First Hayden’s Hope Fundraiser for FOP Research is held in Sausalito raising $75K
April 2006 - The ACVR1 gene that causes FOP, discovered at the FOP Lab, is announced in Nature Genetics Magazine
June 2013 – 25th anniversary of the founding of the International FOP Association
June 2014 - Hayden's Hope receives IFOPA Jeannie Peeper Award for Outstanding Community Involvement
July 2014 – Clinical Trail announced for Clementia Pharmaceutical’s Palovarotene.  

You may also donate by mailing a check made payable to "IFOPA".
In the memo write “Hayden’s Hope Girls With Grit”.

Mail Check to: 
101 Sunnytown Road, Suite 208
Casselberry, FL  32707

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.