ISMRD's Library is open 24/7 for our visitors to read information online or to download to their own computer for their permanent records. Please check back often as we add new material and resources to our collection.

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A. ISMRD Organizational Documents

Document Name	Format	Description
US Internal Revenue Service 501 (c)(3) Determination Letter		Certification of ISMRD's charity status in the United States: April 6, 2004.
Bylaws		ISMRD's Organizational Bylaws created in March 1999.

B. Publications

Document Name	Format	Description
Pathways Newsletter Vol. 8, No. 1		June 2006 Edition: Hue-Man Project funded by European Union; Natural History collection for ML to begin.
Pathways Newsletter Vol. 7, No. 1		December 2005 Edition: Crossing Oceans for a Cure Family Workshop and Walk-Run Fundraiser in Michigan.
Pathways Newsletter Vol. 6, No. 1		Summer 2004 Edition: 1st International Conference on Glycoprotein & Related Storage Diseases.
Informational Brochure		ISMRD's official introductory pamphlet!

C. Glycoprotein Storage Disease Fact Sheets & Publications

Document Name	Format	Description
Biphosphonate Therapy In Mucolipidosis		Publication relating the potential benefits of Biphosphonates for treating Mucolipidosis. Written by Prof. David Sillence, MD FRACP
Intravenous Pamidronate Treatment in Mucolipidosis II/III		This informative article by Jenny Noble, mother of two children with ML III, addresses many of the salient points about this emerging therapy for Mucolipidosis.
Pamidronate Infusion Guidelines for ML		Instructions on administering Pamidronate authored by Prof. David Sillence.
Medical Alert for Parents of Children with I-Cell Disease		Important information from the Greenwood Genetic Clinic regarding anasthesia in children with Mucolipidosis II
Osteodystrophy of Mucolipidosis Type III		A published paper detailing a study conducted on two New Zealand children using Pamidronate as a therapy for Mucolipidosis. Co-written by Jenny Noble, a member of ISMRD's Board of Directors and Prof. David Sillence, MD FRACP.
Psychiatric Symptoms In Alpha Mannosidosis		This paper is the result of a study of 45 patients with Alpha Mannosidosis by Dr. Dag Malm, MD, PhD. It is reprinted with permission of the author and the Journal of Intellectual Disability Research.
Sarah's Journey With ML III		The story of how one young lady has coped with her diagnosis.

D. Other

Document Name	Format	Description
Tea Party Invitation		Help ISMRD by holding a virtual "tea party" fundraiser for your affected child or loved one. Download the invitation, apply a photo of your loved one and send to friends and family. Contact us for further information.

Updated: November 10, 2006