25th Annual Family Conference

More than 300 people gathered July 28-30, 2011 in St. Louis, MO to celebrate our 25th annual conference during what was one of the hottest Julys on record.

Thanks to our conference scholarship program, many families attended their first conference, and many of those were newly diagnosed families. Knowing how challenging that first conference can be, we offered sessions for the newly diagnosed families in addition to a special welcome dinner. Due to the heat, the planned family outing to the St. Louis Zoo was supplemented last minute with an alternative outing to nearby Aquaport. The pools, lazy river and water slides at Aquaport appealed to those who wanted to relax in a cool setting.

Jerry and Tonya Bennett along with Josh Soeterik from BMod Fitness in Thousand Oaks, CA once again led our childcare, now called Camp Courage. Jerry is an amazing person who loves our children and has shown he can deal with any situation that arises in Camp Courage. Jerry, Tonya and Josh volunteer their time and they are permanent members of our MPS family.

This year Jerry rode his motorcycle from CA to MO. Were starting to take bets on what mode of transportation hell utilize getting to Boston next year!

This year, thanks to board member Gordon Wingate, the option for viewing the conference presentations through webcasts on your home computer was available. Plans are to have this available at future conferences, as the feedback from viewers was very positive. We also hope to have the presentations on our website.

Dr. Lorne Clarke and Dr. Joseph Muenzer opened the conference with their talks about the pathophysiology and management of MPS diseases. They presented complicated material in easy-to-understand formats. Dr. Robert Wood from Cincinnati Childrens Hospital stressed via spectacular videos the need to secure the airway of a patient with MPS with a breathing tube. It is recommended, because traditional intubation techniques may fail in patients with MPS, that flexibly bronchoscopy be performed prior to intubation.

Chelsey Montgomery, Emily Durcholz and Jeremy Mask, all young philanthropists inaddition to Super Siblings, amazed the audience by describing the fundraisers they hosted. Done out of love for their siblings with MPS, these young people demonstrated that creativity and motivation has no age limits. Following that energizing session, two of our newest board members, Stephanie Bozarth and Jeff Bardsley, talked about their experience on Capitol Hill as part of the legislative committee and how every member can advocate for federal legislation that can impact our children.

Insurance reimbursement and healthcare reform are nebulous areas, but Sylvia Davila helped make them understandable. Barbara Wedehase introduced the sessions on clinical trials by providing a general primer. Dr. Muenzer reviewed the current clinical trials for MPS III and IIIA intrathecal and MPS IV ERT. Dr. Elsa Shapiro discussed the role of the Lysosomal Disease Network and the Rare Diseases Clinical Research which includes several MPS studies. Dr. Mark Sands ended the Saturday morning talks with a comprehensive overview of treatment techniques currently being researched and a presentation of the 2011 research grants funded by the Society. Interspersed among these talks were three Our Family experiences about participating in natural history studies or clinical trials. The audience was grateful to hear Steve Holland, Melissa Hogan and Jill McDermott share the benefits and tribulations associated with the commitment to be a part of a study or clinical trial.

Soon the banquet ended, the awards were given and we were inspired by the marvelous and inspiring talk by Mercedes Johnson about Second Chance Living and her triumphant road of hope, love and faith. Hugs and kisses were shared with promises about when well meet again. If not before Boston next July, at least well keep in touch on Facebook, through our personal blogs, email, or even a phone call. Friendships made and renewed will sustain us throughout the year.

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