Canadian FOP conference, 2013!

Posted by Karen - June 9th, 2013

Posted by Karen

It’s over…  WAAAHHH!!  Gulp.  Sniff.  I’m sad that it’s finished and I’m not there anymore.

“It” was the Canadian FOP Network’s conference last weekend.  It was so great, and felt so dang short.  It was only a day and a half long, and it went by in the blink of an eye.   But on the other hand, I have lots of great memories from it, so I guess I milked everything I could from it.  ;-)

So here’s how it all went…  A week ago Thursday, my daughter Miranda and I got up bright and early in the morning and took a cab to the airport (dad Pete and brother Owen wanted to come too, but logistics prevented).  We flew to Calgary, and then got off the plane there to wait for our connecting flight.  We were also waiting there for my dad, Malcolm, and mom, Helen, who were joining us on that leg of the journey.  As we were waiting, we spied someone else I knew, but had never met – Kathleen Degenhardt of Goodsoil, Saskatchewan, accompanied by her mom, Karen, and sister, Natalie.  Kathleen is a young woman who, like Miranda, has Fibrodysplasia Ossificans Progressiva.  I had no idea that Kathleen and her family were going to be on our flight, so that was a sweet surprise!

After a longish flight to London, Ontario, we picked up a rental car and drove to the Best Western Lamplighter Inn, where conference-goers were able to get a special hotel rate.  The next day, everything got started…

The conference began with several hours of medical clinics at the Thames Valley Children’s Centre (“TVCC”), a children’s medical rehab facility which hosted our conference.  Everyone with FOP had the opportunity to be examined (if they so chose) by a local Canadian dentist with experience treating FOP patients and by Drs. Kaplan and Pignolo of the University of Pennsylvania’s “Centre for Research into FOP and Related Disorders” (aka the UPenn FOP lab).  I didn’t have high expectations for the dentist – naively figured he wouldn’t be able to tell me anything I didn’t know.  Guess what, WRONG.  Dr. Friedman was able to give me a bunch of useful info; I was impressed (and he was a super nice guy too – big kudos to him for volunteering his time).  As for the appointment with Drs. K and P (joined by anaesthesiologist Dr. Zvi Grunwald, another knowledgeable expert) – I don’t even know what to say.  I’m so in awe of these doctors, who have devoted their professional careers to learning about FOP and how to treat it.  It’s an amazing feeling to be there with doctors who know way, WAY more than I do about my kid’s rare disorder.  Anyway, luckily Miss M hasn’t had any new FOP flare-up activity for a while, so they spent much of their time checking out Miranda’s range of motion.  They also told me about a new anti-inflammatory medicine to try which has apparently been useful for some FOP patients; I plan to get my girl a prescription for it.  Also that day, Miranda spent some fun time hanging out with Brooke Connell, who is 12 years old and has FOP.  Brooke was really great with Miranda, and took her on a walking tour of the TVCC while I was busy with some conference related stuff (Brooke’s mom, Carrie Connell, works at the TVCC, which is how we got the facility).

Dr. Grunwalld, me, Miranda, Dr. Pignolo and Dr. Kaplan (getting a scalp massage from Miranda, LOL).

Brooke and Miranda, posing by their “All About Me” displays.

That day, we also met up with some of the kids diagnosed with FOP since the time of our 2009 conference.  The first was Clara Bouchard from Montreal, Quebec.  Clara is just a few months younger than Miranda, and though Clara speaks French and no English and Miranda speaks English and no French, the girls communicated just fine through the language of Nintendo Wii at the TVCC, ha ha.  We also met Jaxon Hamilton, a super cute and funny 4 year old with a big grin, and James Dizon, a 9 year old whose mom is my co-board member, Debbie Dizon.

The two little FOP ladies, Clara and Miranda, with Clara’s brother Isaac.

Jaxon and Miranda

Later on, after a nice swim break at the hotel pool, we had a “meet and greet” reception at the hotel.  This was just for fun, a nice chance to meet all the conference attendees and get to know each other.  Miranda rapidly tired and had to leave early with my mom – too much excitement and too little sleep in the previous 24 hours – but I hung around for a while and had a great time.

The next day was really the main event.  This was when we got to hear the FOP researchers talk about the latest news, while the kids played in other rooms under the supervision of some terrific volunteers.  That day, Saturday, we heard presentations by Dr. Eileen Shore, research director at the FOP Lab, and by Drs. Kaplan, Pignolo, Grunwald and Friedman.  This was great stuff.  The high points:

– The world of FOP research is a “vastly different place” in 2013 as compared to how it was in 2009 at the time of our last conference (this from Dr. Fred Kaplan).

– The recent survey of FOP flare-ups conducted by the UPenn Lab with the close collaboration of the International FOP Association (“IFOPA”) resulted in, if I remember correctly, an over 70% response rate.  This is phenomenally good, and will give the FOP Lab “natural disease history” information which will be vital to determining the success of potential FOP treatments.

– There are 13 (I think this was the number) different research facilities in the world doing work relevant to FOP.  13!!  This is truly astonishing to me, but there you have it.

– There are 2 very promising drug candidates for testing on FOP patients within the next few years.

– The first potential drug blocks the FOP gene from operating.  This one is being developed by a group of researchers at Harvard University with consultation by the UPenn scientists.

– The second item disrupts cartilage formation and reverts flaring tissues to a dormant state.  The UPenn group is especially hopeful about this one, as it has already gone through “phase 1” safety tests for another disorder.

– The IFOPA is working on a project to set up a registry for FOP patients to enter (anonymously) details about themselves and their FOP progression.  This info will be very helpful to FOP researchers.

It was fantastic to hear about all of this…  Truly music to my ears.  The future is looking very brightmfor potential FOP medicines.

In addition to the research presentations, we also had a panel discussion involving 2 young adults with FOP, Marin Wallace and Ian Brodie, plus the mother of a young adult with FOP, Amanda Cali, mother of Ian Cali, and yours truly, presenting as the mother of a young child with FOP.  Each of us spoke for a while about the subject of “ways to lead a rich and full life with FOP”.  This was very interesting, and provoked lots of dialogue with our audience.

One sad note…  We learned on June 1, our main conference day, that our youngest known Canadian with FOP had died that very day.  Eliane Bissonnette had had an unusual presentation of FOP, or possibly FOP plus unrelated health concerns, but either way, she passed away from complications following surgery a few days prior.  She was just 2 years old.  My heart aches for Eliane’s family.  I am also very sad that we never had the chance to know this little sweetheart.

In any event, fast forward to the evening of our conference, when we had a delicious buffet dinner at the hotel.  After the dinner, we gathered in the hotel atrium for a bunch of photos – 2 thumbs up to all the FOP kids and adults in attendance, who were very patient and gracious as they had to pose again and again.

The kids and adults at our conference who have FOP (minus two).

And then, it was over.  We flew home the next day, and went back to our regular lives.

You know what the best part was?  Yes, it was terrific and so encouraging to hear about the FOP research underway.  But that wasn’t the highlight.  The most fantastic thing about the conference was being with other people who share a unique experience in living with FOP.   There’s no explaining to do; everybody just GETS IT.  This is a priceless thing.

As a final note, big shout of thanks to Carrie Connell, the CFOPN president, who did by far the lion’s share of the work organizing our conference.  It was a great success.

6 Responses to “Canadian FOP conference, 2013!”

  1. Carol Zapata -Whelan says:

    Congratulations, Edna on this amazing FOP conference, which seems to have expanded time to do so much!!
    We are so moved and grateful for all you are doing in
    Canada. The photos of the children are beautiful!

  2. helen munro says:

    It was a wonderful time indeed and went by all too quickly! The future looks great and we all have to keep up with our efforts to raise funds for the research!

  3. Marilyn Hair says:

    Great summary, Karen! I feel like I was there. I know exactly what you mean about being with others who have FOP. It feels like coming home. Congratulations on your strong Canadian CFOPN and a stellar meeting!

  4. kelly sanderson says:

    Brilliant thanks for sharing, please let me know what anti inflammatory
    drug you are going to try out x

  5. Gretchen says:

    Thanks for this hope-filled and wonderful summary, Karen. I was smiling my way through the whole blog!

  6. jose says:

    Hello Karen I am a young man of 35 jose valencia spain Nanos, I read about a “new anti-inflammatory drug
    to try that apparently has been useful for some
    patients with FOP “medicameto what is?

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