Hayden's Hope

Thursday, November 24, 2011


It has been a roller coaster year in the Pheif house and we have so many things to be thankful for. 

We are so thankful for Hayden's health. He is still on continuous oxygen during the day and ventilator at night. Each month we go to see the pulmonologist to test his lung capacity and each month his lungs are slightly better than the last. We look forward to the day that he can go without supplemental oxygen and return back to his old life....but we take one day at a time. 

We are thankful for all of our family and friends who continue their support of us and Hayden. You all are so amazing and we really don't know what we would do without you.

We are thankful for Mt Tam School and families who have embraced Hayden and have been amazing at making him feel just like a normal kid.

We are thankful for Old Mill School and families who continue to support Elsa and help us guide her along life's unpredictable path...at an 8 year old's pace.

I am thankful to everyone at Carnegie Fabrics who have been there for me this entire time and made it possible to take five months off of work to be there for Hayden.

We are thankful to all of Hayden's friends, new and old, who embrace him for who he is and ignore all of the nurses and machinery that surrounds him. You are the ones that keep him going every day. You are the ones that make him a very happy kid. And at the end of the day, that is the most important thing of all...to be happy.

Happy Thanksgiving.

Tuesday, November 15, 2011

More good news on FOP Research

NIH TRND program announces next round of drug development projects

An inhibitor compound for treatment of fibrodysplasia ossificans progressiva. 
Kenneth D. Bloch, M.D., William T. G. Morton Professor of Anesthesia
Harvard Medical School, Massachusetts General Hospital, Boston.
Fibrodysplasia ossificans progressiva is a rare inherited disorder where muscle and connective tissue such as tendons and ligaments are gradually replaced by bone. The compound under development has shown efficacy in a mouse disease model.

Sunday, November 13, 2011

9th Annual Hayden's Hope Fundraiser for FOP Research

November 2011

Dear Family and Friends:

As you know, this has been a challenging year for our family. This letter is written to provide an update on Hayden, to share how your contributions are moving FOP research forward, and seek your continued magnificent support of this cause.
Hayden's last night at UCSF PICU after a 4-1/2 month stay.
On July 11, Hayden came home from the UCSF Benioff Children’s Hospital after a four and a half month stay in the critical care intensive care unit for a collapsed lung that stemmed from a bout with pneumonia. Due to the critical state that he was in, a tracheotomy was performed and his breathing is now supported by a ventilator at night and supplemental oxygen during the day. Although challenging, home has been a wonderful place for more recovery. Our home’s many stairs have turned into a blessing in disguise as physical therapy, as Hayden can go up and down the stairs better and better each day. He was also able to enjoy six weeks of “summer vacation” by having lots of play dates and catching up with friends, going to the movies, visiting Swirl (his favorite frozen yogurt store in Mill Valley) and hanging out with cousins Anika, Zachary and Sammy Kaplan.
Hayden & his sister Elsa enjoying frozen yogurt from Swirl.
Earlier this fall, Hayden started sixth grade at Mt. Tam School in Mill Valley. Nervous and excited at the same time, we made it through the first day knowing this will be a great place for him.

In August, a team of 27 scientists representing 11 universities gathered at the University of Pennsylvania for a two-day workshop designed to establish priorities for developing effective treatments and eventual cure for FOP. This meeting marked the first time that such an extensive team of scientists all working on related aspects of the FOP condition were assembling in one room. The number of targets for therapy and compounds that offer potential for treatment are growing, and there are many other talented research partners assisting the great work of our core FOP laboratory. More information about this progress is found in the October 2011 issue of Milstones, the IFOPA newsletter.

Since 2003, Hayden’s Hope has been a pacesetting fundraising event for FOP research. Over one million dollars in revenue has been generated through the eight special events that have been held in the Mill Valley area. The progress of researchers is made possible by your ongoing financial support, and those of other FOP families dedicated to the cause.

This year we are asking our family and friends again for their support by making a donation to the International FOP Association (IFOPA) in honor of Hayden’s Hope. Please make your donation either on the IFOPA website or via check to the IFOPA.. All contributions are tax deductible. They will be credited to Hayden’s Hope and directed toward FOP research.

We are excited to get back to normal life and take each day one at a time. As always we are thankful for your ongoing support and encouragement.

John & Megan Pheif

Hayden enjoying a sunny day.

Wednesday, November 9, 2011

My Friend Adrienne

When Hayden was in the hospital, during the darkest of days, I started reading my friend Adrienne's blog.  I've known Adrienne since high school and she has always had a quick and humerous whit.  Adrienne's blog is called The Momalog - Good Enough Parenting (http://www.themomalog.com/).  I would read her posts late at night when I couldn't sleep and her words used to make me laugh so hard I would have tears in my eyes.  It was such a great escape from what was really going on around me.

Adrienne has honored me and helped to spread the word about FOP by posting a piece I wrote back in April, when Hayden was so very sick and we weren't sure if he would be able to come home or not.  Here is the link to the post.  http://themomalog.com/2011/11/08/my-friend-megan/

Thank you so much Adrienne.  I couldn't have gotten through the 4-1/2 months without your humor.

Saturday, November 5, 2011

Genetic Technology Breaththrough

Proof-of-Principle for FOP Treatment

Editorial explanation of landmark paper published in the Thursday October 20, 2011 online edition of Gene Therapy a Nature Journal is available. Read how Dr. Fred Kaplan, Dr. Josef Kaplan and Dr. Eileen Shore have developed a new genetic approach to specifically block the damaged copy of the FOP gene in cells while leaving the normal copy untouched.

Click on the link below to read Dr. Fred Kaplan's and Dr. Eileen Shore's editorial explanation

Genetic Technology Breakthrough

Click on the link below to read the paper published in Gene Therapy a Nature Journal

Restoration of Normal BMP Signaling Levels