National MPS Society 26th Annual Family Conference

This year’s family conference was held July 26-28 in Boston with over 400 attendees, all of whom had fun being together plus sharing and hearing new information.  The conference began with excited greetings among friends Thursday night at registration and dinner.  The families whose children had been diagnosed in the last twelve months had a session that evening with Drs. Muenzer and Frye where they could focus on questions about their diseases and issues of coping.  The syndrome breakout sessions Thursday evening are always a favorite part of the conference and a great way for families to personally meet their Facebook friends and learn from one another.

We had a focus this year on educational issues with Lillian Wong, JD, an attorney who advocates for special education rights, representing parents and children.  Ms. Wong discussed effectively advocating within the special education system and provided practical advice about communicating with the school.  Lisa Muller, a special education teacher and mother of Riley who has MPS II, talked about how being “on the other side of the table” is both challenging and terrifying.  Melissa Hogan, mother of Case with MPS II, and also a lawyer, led an excellent workshop on IEPs where she provided a tremendous amount of helpful information.

Thanks to the work of Beth Karas, many families, researchers and clinicians, we have a new video that will have several segments.  The Fundraising Committee showed the ten minute draft fundraising video that was spell binding; everyone raved about how amazing it is.  Jamie Witker from Outland Films in LA produced a magical video that gently educates while telling the families’ stories.  We will let you know when the final products are completed and available to you – at no cost.  Lisa Todd and Brooke Carter spoke passionately about fundraisers they hosted, very different fundraisers, and the mechanics behind each.  Take time to listen to their talks on our website – they’re inspirational!

2012 Conference in Boston

Dr. Roberto Pineda, an ophthalmic surgeon spoke about eye-related problems in individuals with MPS diseases.  Two of his patients, Nick Boyce and Sam Caswell, both of whom have MPS I, shared their experiences having eye surgery – very positive experiences!  Stephanie Bozarth talked about the orthopaedic surgeries her daughter Annabelle, who has MPS IV, has undergone with Dr. William Mackenzie following his presentation.  Dr. Mackenzie is an internationally renowned orthopaedic surgeon and had lunch with parents Friday during the Expert Lunch session, along with several of our other speakers.

This year we have contracted with M+R Strategic Services to help with our legislative work.  Lori Fresina and Diane Pickles from M+R hosted a concurrent session to show parents how to meet with federal lawmakers in their home state and share their story.  This was a personal presentation of the webinar the legislative committee presented this spring.  During the Legislative Committee presentation, Roy Zeighami showed the steps of contacting your legislators when we send our “action alerts” and how incredibly easy it is.  Really, just a few clicks and you can send a personal message to your legislators.

On the research side, we heard the exciting work of Dr. Calogera Simonaro and anti-TNF-alpha therapy to reduce inflammation leading to improved bone growth and joint tissue in MPS VI rats.  Dr. Steven Walkley, chair of our Scientific Advisory Committee and leading researcher on lysosomal diseases affecting the brain, explained the many events ensuing when the lysosomal system is not functioning normally and where therapeutic intervention may occur.

Camp Courage

On the practical side, Coach Jerry Bennett, our Camp Courage director, explained the use of Behavioral Sensory Integration, using personal examples presented by parents attending his concurrent session.  Dr. Kim Frye presented the compelling data why we must take care of ourselves in order to care for our children, and gave examples how to do so.  Nicole Shannon provided tools to help solve those problems in marriage that seem to get stuck in gridlock, and helpful information about ancillary therapies was provided by Amy Holland (art therapy), Lisa Muller (adaptive swimming) and Julie Reneer (essential oils).

Before the social hour and awards banquet the conference ended with concurrent sessions hosted by Monica Miller from BioMarin, Dr. Gerald Cox from Genzyme and Dr. Ann Barbier from Shire.  They presented updates of research, clinical trials and natural history studies and answered many questions from the attendees.  As our banquet speaker, Matt McNeil talked about writing The Strange Tale of Ben Beesley, proceeds of which are going to the Society.  This book is getting a lot of traction, and we see awards or even a movie in its future.  Check it out,

Promises of “see you in San Antonio next October” were heard Saturday night as people left the banquet.  Plans were being made to meet October 24-26, 2013 in San Antonio, TX for our 27th Family Conference and a day at Morgan’s Wonderland!  Details about that conference will be available in early 2013.