In the Spring of 2015 I reached out to a not for profit to plan their first conference gathering. This event held special meaning to me, it was what I knew I could do, to give back, to support this foundation in it’s goals and help families just like mine. You see in December of 2014 my daughter was diagnosed with a rare genetic syndrome, we had searched for 11.5 yrs for an answer, and it finally came, FOXG1 Syndrome.
The International FOXG1 Foundation is just in it’s infancy, formed through love and a common bond, a group of parents scouring message boards for others just like them realized the only way to connect other families with children receiving this diagnosis and raise awareness was to start a foundation, and so it was formed in 2012. To date there are just over 200 diagnosed with the syndrome connected with the foundation.
It was time to assemble as a group to learn from leading researchers, doctors, therapists, and other parents. So we teamed with 3 other sister syndromes to collectively plan a conference event to hear about leading research, studies, therapies, and treatments. And of course most importantly network with parental support group.
Sitting on the executive planning board, and then on the other committee groups, meeting for over a year, on conference calls weekly with individuals from California, Tennessee, Oregon, and all over the U.S. was challenging and rewarding.
First was to source a venue, it needed to be fully accessible, with impeccable conference facilities, and easy transportation options for those travelling in Internationally.
Planning specifics were broken down into volunteer committees to oversee, program details, which included scheduling session topics, room layouts, sourcing speakers, and then arranging accommodation, registration, and travel for them, tribute reception and auction, and of course sponsorship.
Results were a jam packed 3 days, with just over 300 attendees, laid out into a beautiful colour program and included 50 sessions, some concurrent and some as breakouts. Meals and and some of the best break options I have ever seen were all included,(yes even ceviche!) at the stunning Eaglewood Resort and Spa near Chicago Illinois.
I had no idea what to expect this first year, I really hoped for 20 of our FOXG1 families world wide to want to attend, but it was amazing, with 30 registrants from across the US and Canada, and spouses/caregivers and even 6 kids in attendance, adding to the over 300 attendees combined with the other 3 foundations. As I looked at these families the last day for closing remarks and addressed them, i was immensely proud of this milestone I helped the Foundation achieve.
I expressed how we as parents to special needs kids with complex medical issues, spend a great deal of time feeling hopeless, wanting to do more for our kids, not sure how to best help them and provide them with everything they need. But we all have our own skillsets, or areas of expertise, and conference planning was my way to do that. We individually can find our own ways to give back, contribute and support: to raise awareness, fundraise, and ultimately help our children with advances in research for treatments.
This can be applied to everything we do at ITM Events, we love what we do, we have a passion for it, and we use these outlets to help others live their moments the best way we know how.