Flashbacks from Baltimore
The 2018 OIF National Conference, themed EXPLORE, gathered over 650 attendees and 50 speakers for a busy and memorable weekend in Baltimore, Maryland! The attendees of this summer’s conference represented seven countries and nearly forty US states. And on behalf of the OIFE I thank the OIF for the kind invitation to take part in this great event together with my colleague from NFOI, Inger-Margrethe S. Paulsen.
This was my second time at an OIF National Conference, which is quite different from other conferences I usually take part in. First and foremost it’s a family conference, bringing together OI-families and adults in order to provide updated information from professionals and OIF staff. But it’s also a very important arena for peer work. Valuable contacts and friendships are made across age groups. Another special aspect of this conference is the large number of professionals attending – not only to teach, but also to listen and learn from the OI-community.
I really like the sense of collaboration the OIF has managed to establish with the members of their Medical Advisory Board and other volunteer professionals. During the conference, the professionals give free medical consultations and some of the experts bring students or doctors in training to the consultations, in order to increase knowledge on OI. There is also a wide variety of sessions & talks – both plenary and with different tracks for various target groups. I was a little bit surprised to see how few participants there were at some of the interesting sessions, but I guess there’s just too much to choose from.
I must give credit to Program Director Petra Harvey and the OIF staff for constructing such an interesting program with something for all. For me some of the highlights were:
- The session about dental issues, with contributions from 3 different professionals, where one had OI himself. That was probably one of the funniest talks I’ve ever heard.
- The topic about basilar impression/invagination (BI) has not been addressed at many conferences. But this year I’ve heard two good lectures about it – one with dr. Suken Shah in Baltimore and the other with dr. Ilkka Helenius at the EPOS-conference. I think it’s important that both professionals and people with OI become more aware of BI, so they are able to spot the signals when a person is starting to have neurological issues because of this complication.
- At the Women’s Forum, only women with OI are allowed to attend, and I think this is a success criteria. It creates a safe space where women with OI can share their questions and worries regarding sensitive topics as menstruation, sexuality, contraception and menopause. This year it was 3 professionals providing advice in addition to peers – a physiotherapist, a gyneochologist and an orthopedist.
The pain session was extremely popular, but a little bit disappointing because it mostly focused on various types of pain medication and not so much on the different kinds of pain that people with OI can struggle with. The use of strong opioids like oxycontin was really not problematized. This surprised me in the light of the ongoing opioid crisis in the US.
Another highlight was the keynote talk from paralympic gold medalist swimmer McKenzie Coan. A highlight that we actually missed was the concert with the famous violin player Gaelynn Lea, which I had been looking forward to attend.
But when you show up 35 people at a restaurant where the majority are wheelchair users, that dinner might take a while. No big surprise! The dinner was somehow connected to Tracy Mulroy’s involvement in getting more focus on adult health in OI-research. For this she was awarded the OIF 2018 President’s award, including her efforts in establishing the Jamie Kendall Fund, which is the first OI-community-directed and community funded research initiative. Jamie Kendall was a former board leader of the OIF, who died from pulmonary complications and her memorial fund is now being used to finance a pulmonary study on adults with OI.
So what did I forget? Oh, the Walk-n-Wheel! It’s still a mystery to me, how walking a few hundred meters can bring in that amount of money. But yes we can! And then I didn’t even mention the talent show and the advocacy day to Capitol Hill. We did not manage to take part in all the amazing activities. But we learned a lot and we got to speak to both new and old friends. We’ll start saving up for the 50th anniversary soon. See you in Omaha, Nebraska in July 2020 everyone!
Written by: Ingunn Westerheim