Annual Conference

We made 30 a year to remember at our recent family conference in Columbus, Ohio! With a record number of families, siblings and affected patients attending, we had three days filled with information, fun and family.

The event kicked off Aug. 4 with registration, a welcome dinner and special breakout events for families diagnosed within the past year. Dr. Joseph Muenzer and genetic counselor Lisa Berry hosted a session on coping with MPS and related diseases for newly diagnosed families.

Friday’s events included plenty for kids to do at Camp Courage and plenty of sessions for adults to gain insights into treatments, common issues and advances in MPS and ML.

Sessions during the morning featured presentations by Muenzer on emerging therapies, Dr. Kevin Flanigan on gene therapies, Dr. Patti Dickson on research updates. The doctors held a panel discussion after the presentations and took questions from session participants. The afternoon sessions focused on pulmonary and airway issues with Dr. Bob Wood, followed by talks on fundraising, public speaking with Christopher Hill and advocacy efforts.

Emerging Therapies with Dr. Joseph Muenzer

Gene Therapy Overview with Dr. Kevin Flanigan

Research Updates with Dr. Patti Dickson

Pulmonary Issues with Dr. Bob Wood

Panel Discussion with Dr. Dickson, Dr. Flanigan and Dr. Muenzer

How to Tell Your Story with Chris Hill

Fundraising and Advocacy

Though presentations were informative and offered positive updates, we also took some time to remember those we’ve lost as a community to MPS and ML with a remembrance ceremony.

New to this year’s conference was the planned giving cocktail hour. This allowed those interested in planned giving to get more information on how to leave a planned gift and what options are available.

Saturday saw the morning occupied with the Columbus Crush 5K, with runners, families and friends all joining together for a fun run/walk event. Shire hosted a luncheon for all the run participants and guests, and everyone was able to enjoy a nice morning at the Scioto Audubon Park.

The evening brought several specific breakout sessions, including some for siblings, moms, dads, extended family and adults with MPS and ML. CYCLE and SPIRIT breakouts were also held for adults and bereaved families.

The evening concluded with a banquet and awards ceremony. Awards were given for Outstanding Membership Achievement to Kendra Gottsleben and Dorothy Mask. The Directors Award was given to Jill Wood and Samantha Slawson. The Friendraising Awards went to Christine Tippett,Dan and Natalie Kanney, Jennifer Fair, and Stephanie Kell.

For more information on the conference, check out our photo gallery! We’ll see you all next year in Minneapolis!


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