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.