By Nick Assendelft
Foundation Vice-President

Four days, three nights. Fun in the sun. Something for everyone.
That might be a description you would expect to see for a vacation or a cruise. But that could also be how you'd describe the seventh Phelan-McDermid Syndrome Foundation conference.
One hundred and nineteen families, one of the largest number to attend, met at the end of July in Greenville, S.C., to learn about the unique ways it takes to raise a child with 22Q13 deletion.
This year's conference at the Embassy Suites Hotel and Resort had an added emphasis on research and the exciting changes that are on the horizon in the scientific field. Attendees learned about knockout mice, autism, proteins and got a glimpse into the future of research projects.
Four days of sessions - the longest conference ever - was packed with helpful information, mentoring, parent-to-parent advice, fund-raising ideas, transitioning to adulthood and other practical help. Parents learned about toilet training techniques, legal issues, communication devices, medical help, played baseball and danced the night away to a live performance by the Nashville Songwriters Tour.
Our audience was international with families from Canada, Brazil, Ireland, India, the United Kingdom, Costa Rica, Australia and Argentine in attendance. For 51 families, it was the first time they were at the conference.
There was much discussion over where the Foundation has been and what's in its future. Fund-raising and research were identified as two critical areas to the Foundation's continued success. Families held a detailed dialogue about the direction both of those goals should take. On the fund-raising front, the Foundation launched its “$22 for 22Q13 in 22 Days” campaign, urging everyone to ask 22 of their friends and family members to contribute $22 to the Foundation in 22 days. To date, we've raised $30,000 through the campaign and its success means we'll likely launch it again in the near future.
Raising money is a key element to being able to fund research. Many scientists are keenly interested in the SHANK3 protein that is a key factor in the manifestation of Phelan-McDermid Syndrome. One reason is that SHANK3 appears to be one of the genetic causes of autism. The Foundation is aggressively trying to work with researchers in the autism field to do studies that will also tell us a lot more about the genetic underpinnings of Phelan-McDermid Syndrome.
The Foundation will have to raise a lot of money to accomplish the short- and long-term goals of research, which is why fund-raising is so critical as our group grows.
As our group gets larger and attendance at the biennial conference climbs, so do the costs associated with it. The estimated cost to put on the conference this year was $72,000. Registration fees offset about a third of that cost -- $23,000 - and that brought the Foundations' bottom-line cost of the conference to about $49,000.
Except for the few hired speakers, volunteers, mainly parents, ran the majority of sessions. Forty-one families helped out in some way during the conference, whether with registration, programs, T-shirt sales or other duties.
It takes a lot of money to put on the conference, money donated by members and their friends. For that, the Foundation is extremely grateful. One of our group's main goals is to fund the biennial conference and the Board of Directors is honored to be trusted with the duty of wisely spending the money raised.
The wonderful reviews heard throughout the weekend and the heartfelt thanks that many expressed makes the effort worthwhile. The conference was a gathering of families who understand each other's troubles, tribulations and joys. We cried with each other. We laughed. And we built friendships that only those affected by Phelan-McDermid Syndrome can understand.
See you again in 2012!