ISMRD’s Accomplishments

ISMRD has been fortunate to achieve a few notable milestones through the hard work and dedication of the members of our Board of Directors, past and present; an empathetic and sincere group of scientists and medical professionals and a concerned and proactive group of families from many different countries. Without the three groups working as a team, ISMRD would not be in its present position of being the world's most prominent advocate for Glycoprotein Storage Diseases.

Among our most significant achievements have been the following listed below. To learn more please follow the links to a more detailed account about the highlights of each.

3rd International Conference on Glycoprotein Storage Diseases

The 3rd International conference on Glycoprotein Storage Diseases was a fantastic success with more than 150 delegates attending from as far away as Norway, Belgium, Italy, United Kingdom, Australia, New Zealand and the USA. The meeting was held on July 28–29th  2012, in Charleston, South Carolina USA.

ISMRD and the Greenwood Genetic Center also hosted the 3rd round of the Natural History Study on 27th and 30th July 2012 with more than 30 families taking part.

The conference was again sponsored by the National Institutes of Neurological Disorders and Stroke. We are very grateful for their on going support of these conferences. We are also want to acknowledge sponsorship from: The EveryLife Foundation, Mercy Medical Airlift, Zymenex, Rock4Dakatah, Genzyme and Ultyragenyx.

To see the full conference program and abstracts click here

2nd International Conference on Glycoprotein Storage Diseases

The second International conference for Glycoprotein Storage Diseases was held in Michigan, USA July 26 - 27 2007. The conference was sponsored by the National Institute of Neurological Disorders and Stroke, The Office of Rare Diseases and the National Institutes of Health.

ISMRD is very grateful to the following organizations who also sponsored the conference: Amicus Therapeutics, Genzyme, GOLD (Global Organization for Lysosomal Diseases), Novartis, The National MPS Society, Sigma Tau Pharmaceuticals.

Crossing Oceans for a Cure

ISMRD hosted a joint Family Workshop and Walk-Run benefit fundraiser in Ann Arbor, Michigan April 22-23, 2005. The workshop was attended by families affected by Alpha-Mannosidosis, Mucolipidosis II and Mucolipidosis III. It was the largest such gathering to that date of Mucolipidosis families anywhere in the world, with attendees coming from as far as New Zealand and Europe. The Walk-Run benefit the next day was ISMRD's most successful to date and raised over $40,000 for our services, programs and research objectives.

Photographic collage of ISMRD families.

The 1st International Scientific & Family Conference on Glycoprotein Storage Diseases

The word's first International Scientific and Family Conference on Glycoprotein Storage Diseases, held April 1-4, 2004 in Rockville, Maryland USA.  This conference, sponsored by the National Institute for Neurological Diseases & Stroke, brought together the most prominent scientific and medical authorities on these diseases, as well as the first gathering of families affected by them. From it came a renewed sense of interest among scientists in the mechanisms causing these diseases, and a new found sense of kinship and purpose for attending families.

Photographic image advertising the 1st international conference on glycoprotein storage diseases.

The People's Genome Celebration

The People's Genome Celebration held in Washington, D.C. on June 9, 2001.  This one day event centered at the Smithsonian Institution's Museum of Natural History was a one-day event celebrating the Human Genome Project.  The day was filled with public forums, panels and displays and was capped by the evening premier of a photographic exhibit celebrating people affected by a genetic disease.  ISMRD proudly witnessed two of its children, David Pierce and Taryn Murphy (both affected by Alpha-Mannosidosis), captured in stunning museum-quality prints and displayed in the Museum of Natural History.

Photographic collage of People's Genome Celebration.

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