Dinner for FOP

Back in October a friend of mine said she wanted to do a fundraiser for Erin’s medical needs.  As were discussing ideas, I knew that I wanted to include a project that would raise funds for research.  The FOP lab is headed by Dr. Frederick Kaplan with Dr. Eileen Shore at the University of Pennsylvania.  Some FOP families coordinate bingo tournaments, motorcycle rallies, golf tournaments, and the list goes on.  Our family is not like that; although I would do anything to be able to pull off an event of that magnitude.  I admire those families and I thank them for helping us find a cure.

My family has a unique dynamic.  Alan and I have three wonderful children.  Each child has their own unique challenges.  Our oldest has typical ADHD.  The middle child was diagnosed with high-functioning Autism in addition to anxiety.  Finally, our youngest was born with Fibrodysplasia Ossificans Progressiva.  Alan and I know that the boys have a great prognosis.  Between early intervention, a great psychiatrist, and an awesome school district we are confident our boys will have successful adult lives.  Erin’s future is not as certain.  Where the boys are learning how to adapt to social situations and learning how to interpret incoming social messages, Erin’s challenges are physical and not social.  She must learn to adapt to her environment when her body decides to change and the emotional roller coaster FOP creates.  Erin has a very promising academic life.  She will definitely go on to higher education and probably be the most successful in college.

As her mom, I came to terms early on that there is absolutely nothing I can do to stop the FOP progression.  Yes, I can put a blinged out helmet on her head, talk to everyone she interacts with on the importance of keeping her safe, try to prevent falls, etc.  It has been four years since her diagnosis and still there are times when I drop to my knees in desperation praying for a cure for this horrific disorder.

Because of our unique family challenges, our everyday life can be hectic.  Unfortunately it doesn’t allow a lot of time for planning fundraisers.  However, there is one activity that brings our family together day-in-day-out…dinner time.  We are a family that believes in sitting around the dinner table each night, where we talk about our day.  Over the last fifteen years, we’ve had some practice in preparing awesome meals.  So why not share?

I’ll be reaching out to friends and family and ask if they would like to participate in our year long awareness project.  If you are interested, please feel free to contact me.  To guarantee a spot, go to Go Team Erin! and make a small donation towards Erin’s medical fund.  In the message box type “Dinner for FOP.”  You can elect not to have your information published on the donation page.  I will contact you and we’ll work out a date and time that works best with you.

If you should participate in a dinner, please note that the dinner will be photographed and published here on our blog and on a Facebook page called “Dinner for FOP”.  Your initial donation will be directed towards Erin’s medical savings account.  We ask that our guests come to dinner with a monetary donation made out to International Fibrodysplasia Ossificans Progressiva Association (IFOPA) who fund and support the FOP lab.  Let me emphasize that we will take ANY donation…$5, $25, etc…we’ll take it.  If you can give more…we won’t turn away the check.  Just know that our goal is to raise awareness for this debilitating disorder and to make new friends along the way.

I cannot express strongly enough the need to find a cure for FOP.  We could very well lose our baby girl to this horrible genetic disorder.

Suzanne