Remember That Idea For a Conference? Well.....

OK, sometimes things just emerge into the zeitgeist, as they say, and it appears that this notion I floated a while back for a conference on adults with post-club feet syndrome has some legs (sorry, couldn't help myself.) There is a summer intern over at the Ponsetti Institute that is working to help launch an international event, and, well, let the intern tell you directly:

"My name is Mayanthi Jayawardena and I am the summer intern at Ponseti
International Association and a new member of your forum. I wanted to
let you know about International Clubfoot Week (ICW) that will be
launching September 26-October 1 of this year. ICW will include a
variety of events around the world such as research forums,
community-based fundraisers, children's races, and the kickoff of
quarterly virtual parents' forums. Jenny Trevillian suggested that
I ask this group what you would find useful in a video web conference
for parents We intend these informational forums to be non medical,
instead focusing on everyday issues that parents of clubfoot patients
deal with, and parent-led, with each forum having a specific topic. An
example of a forum topic could be bracing : cost, keeping children in
braces, where to find them, how to make your child more comfortable
during bracing treatment, etc.

· Would you be interested in participating in such a forum?

· Would you be interested in leading the discussion in a
forum?

· Do you have any suggestions for topics that would be
relevant to you and other parents?

Thank you so much for your input!

Mayanthi Jayawardena

So, I made contact with Mayanthi, and asked about including something for us adult post-clubbies, and she/he (sorry, don't know for certain)  asked if I would like to take the lead on organizing that aspect, and I am now awaiting the response to my response to this excellent suggestion. Don't you just love these kinds of coinc-adinks?

So, I ask all of you readers again - is this something you would make a priority to attend? And what would you want to see happen at such an event? I would of course work to get as many doctors to come as possible, under the understanding they are there as much to learn from clubbies as we would be there to learn from them. But what else would serve to meet the needs of post-clubbies? And please do not suggest post-clubby sack races - I already have that on the agenda:-)

Here's a few of my ideas:

• A forum on footwear, orthotics, and gait improvement.
• a couple of massage therapists and physical therapists with experience working with post-club feet in hands-on demonstrations (good reason to include your partners!)
• Alternatives to fusion, new directions in treatment options
• Paliative self-help - foot massage machines, foot bath treatments, other equipment and tools, lotions, creams, etc., for temporary relief (a possible vendor fair?)
• Discussions on pain relief methods
• A collection of resources for all of the above as a take-away for participants.

Again, just a few of my own ideas. What are yours? And will you be interested in attending? I believe we will have some possible dates fairly soon. Then the question is, where? This first one may be best located in the US, as it would be in conjunction with the overall event, and probably in the vicinity of the Institute itself. But this would not preclude having an Internet video linkage for people unable to travel that far, so I see no reason this would not be an international event. Even the vendors could have a Facebook page for the event, with all of them on the same page.

What say you all? Please get back to me - I will take this seriously, and I hope you will, too. This is an excellent opportunity to finally get the recognition of the more active and well-organized CF community as it centers on newby clubbies - its really a continuum, with us adults on the other end. We should not have to be so isolated, and by being more a part of the over-all CF community, we are better positioned to influence things like research. And maybe, to not be so invisible.