FOP Mothers’ Retreat

Posted by Karen - July 3rd, 2009

OK, I haven’t done a blog for almost 2 weeks now, but I have a good excuse…  Last weekend I went to an FOP mothers’ retreat, and I was there from Friday morning through Monday evening.  No time to blog. ;)

The retreat was held in a picturesque little town on the coast of New Jersey.  The only qualification for attendance was that you had to be the mother of a child (of any age) who has Fibrodysplasia Ossificans Progressiva.  It was a FANTASTIC event, and I am very glad I attended. 

I flew to New Jersey on a “red eye” flight beginning late Thursday evening.  I didn’t sleep much on the plane; too uncomfortable and I was too excited.  I flew first to Toronto, and then from there transferred to a flight to Newark, New Jersey, which arrived at about 10:30 AM.  At the airport I was picked up by another one of the moms, Linnette Ruiz (mother of 16-year old Lindsay), who was driving to the retreat from her home in a suburb of New York City.  Linnette and I had a nice drive for about 1.5 hours to the retreat location…

Our destination was a summer home owned by fellow FOP mom Amanda Cali, mother of 19-year old Ian.  The home is just one row of houses back from the beach, and is SOOOO lovely…  I was very impressed, to put it mildly.  It’s a 4 bedroom home, with twin beds in 3 of the bedrooms.  Since 7 of us moms joined Amanda for the retreat, we doubled up in the bedrooms.

The women who attended were as follows:

  • me from Burnaby, Canada, mother of Miranda, age 4
  • Linnette Ruiz from New York City, USA, mother of Lindsay, age 16
  • Barbara Rossano from Long Island, USA, mother of Laura, age 20
  • Marie Hallbert from Eskilstuna, Sweden, mother of Hugo, age 11
  • Moira Liljesthrom from Buenos Aires, Argentina, mother of Manuel, age 12
  • Heidi Padilla from Maryland, USA (sorry I didn’t get the town!), mother of Nathaniel, age 5
  • Wendy Henke from Delaware, USA (also didn’t get this town), mother of Justin, age 9

So, we were 5 Americans, 1 Canadian, a Swede and an Argentinian.  Definitely qualifies as an international group…  Unfortunately I don’t have a picture of all of us together, but I do have one with 6 of us.


I think Moira was taking this picture, which is why she wasn’t in it, but I’m not sure where Barbara was…  I’m the one in the middle with the blue top.

Anyway – on arrival the first day, we relaxed and got to know each other for a while, then we had a fab lasagna supper cooked by Barbara.  That evening a truly violent thunderstorm raged…

Here are the clouds brewing over the ocean just beforehand.

Here are the clouds brewing over the ocean just beforehand.

… But we sat inside, nice and cozy, and did the first of 4 workshops prepared by Amanda.  These workshops were all about some aspect of parenting a child with FOP and parenting in general.  During these discussions, we shared many emotional details and lots of tears, but I felt these were good sessions for catharsis, and also for learning a lot from each other.  After the first such session, and having been awake for about 36 hours (!), I collapsed in bed and slept like a rock.

The next morning, the storm had completely cleared away and it was a gorgeous sunny day.  We woke up bright and early and headed to the beach for a morning yoga session.  Let me tell you, you haven’t done yoga ’til you’ve done it on the beach with sand all around and an ocean breeze blowing through your hair!  We then went home, ate breakfast and did workshop number 2.  After a casual lunch, we had a free afternoon to spend at the beach, spa, shopping or whatever.  I did all of the aforementioned. 

Here are Moira and Marie at the beach.

Here are Moira and Marie at the beach.

Saturday night we joined Hillary Weldon, mother of 16-year old Whitney, for drinks and dinner at a yacht club nearby of which she is a member.  The food was amazing, and it was really great to get to know Hillary as well (thanks Hill for hosting us!).

Barbara wasn't in our group shot above, but here she was at the yacht club in her gorgeous green dress.

Barbara wasn't in our group shot above, but here she was at the yacht club in her gorgeous green dress.

On Sunday…  Let’s see, I think it was workshop number 3 in the morning, lunch, and then another free afternoon.  I think I spent the WHOLE afternoon on the beach!!  It was really sooo very nice.  That evening we all prepared dinner together, and then had the 4th and final workshop.

We got up the next morning and piled into cars, and after the obligatory stop for coffees at 7-11, we all drove to Philadelphia for an exclusive, moms-only tour of the “Centre for Research into FOP and Related Disorders” (aka the FOP lab) at the University of Pennsylvania.  Dr. Eileen Shore and Dr. Fred Kaplan took us all around the lab and showed us how everything is done.  This was another emotional experience, and again there were lots of tears flowing.  I think it’s fair to say we all felt the same thing: immense and awestruck gratitude that these people are working so hard for a treatment for the rare and terrible disorder which affects our kids…  I’ll never forget this tour.  Here’s a photo of Jeannie Peeper, founder of the IFOPA, located at the entry to the Centre:


At the end of the tour, we had sandwiches and fruit for lunch with all 18 (I think?) scientists and staff from the lab.  We ate lunch on the 14th floor of the building, with a beautiful view of Philadelphia spread out before us.  After finishing, I had the immense privilege of giving a speech of thanks to the whole FOP lab team on behalf of the mothers on the tour.  I couldn’t quite keep it together, and felt myself in tears while speaking…  I was very grateful for the opportunity to thank this group, which has spent so many long hours researching FOP – a disorder estimated to afflict about 3300 people worldwide, and with only 800 or so known cases.  I still sometimes can’t believe my child has a disorder so rare, and even further, that there’s ANYONE working on it…  And yet it’s so.  Actually, I don’t think I can ever sufficiently express my gratitude to these people for helping my Miranda.

In this photo: Meiqi Xu, discoverer of the FOP gene, Dr. Fred Kaplan and Dr. Eilleen Shore.

In this photo: Meiqi Xu, discoverer of the FOP gene, Dr. Fred Kaplan and Dr. Eileen Shore.

 …And then it was over, and we all went home.  What a tremendous experience.  Many, many well-deserved kudos to Amanda Cali for organizing this well-planned, valuable and wonderful retreat.  Also, I wish heartfelt thanks to Heidi, Wendy, Linnette, Barbara, Moira and Marie for being such terrific companions and wise mothers.  Their children are fortunate to have caring and devoted moms like these.

Phew!  So that was my weekend on the shores of New Jersey…

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One Response to “FOP Mothers’ Retreat”

  1. Julie Collins says:

    Thanks for writing this account. I would have loved to join you but it wasn’t possible this time – maybe next? I know just how much I have got out of the mothers meetings at the symposiums and conferences our family has previously attended. It is very therapeutic to be sharing with the only group who really understands what it’s like to be a mother in this unique situation. The laughter and the tears all helps one cope at the very least. Amanda Cali is an amasing woman and her sons are both heros to my Ollie.My positive thoughts and prayers are often directed to our wonderful fop lab team under Fred and Eileen …yes we are a very blessed community.

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