Leukodystrophy Research Videos!

The Global Leukodystrophy Initiative (“GLIA”), in collaboration with the Moser Center for Leukodystophies, held a 3-day conference entitled “Emerging and Translational Biology of Leukodystrophies” at the Kennedy Krieger Institute in Baltimore, Maryland during May 2016. GLIA has now made many scientific-presentation videos freely available from each day of the conference. Visit GLIA’s Conference videos page, where a wealth of recent leukodystrophy scientific research is available for your education and enjoyment. Thank you GLIA for this wonderful opportunity to learn about recent progress affecting newborn screening, treatment and cure for the leukodystrophies!

The Lysosomal Disease Network wishes to express its thanks to Dean and Teryn Suhr of the MLD Foundation, a member of GLIA and one of the Lysosomal Disease Network’s affiliated patient advocacy groups, who provided audiovisual support to GLIA throughout the Conference. Thanks to their tireless efforts, dozens of people from around the world were able to stream the presentations live via the GLIA website.

Free Booklets Pertinent to Rare Disease Patients & Caregivers

The American Health Lawyers Association (AHLA) offers a variety of free booklets that provide education about matters of interest to rare disease patients, their caregivers and family members. For example, these are just a few of the booklets available: “A Handbook for Parents: The Individuals with Disabilities Education Act”“Guide to Legal Issues in Life-Limiting Conditions, 2nd Edition”, and “Guidebook for People with Disabilities”. These free booklets are all part of AHLA’s extensive Public Interest Series. Scroll down to the paragraph entitled Health Care Consumer.

The American Health Lawyers Association, with 13,000 members, is the nation’s largest, nonpartisan, 501(c)(3) non-profit educational organization devoted to legal issues in the health care field.

Sanfilippo Children’s FDN in Australia

The Sanfilippo Children’s Foundation in Australia is currently calling for “Expressions of Interest” for their 2016 Project Grant Round. This opportunity is not limited to researchers in Australia. These grants include translational research grants which provide funding for projects with significant potential to move through the translational pipeline towards treatment of Sanfilippo syndrome. This includes pre-clinical and clinical research to develop new treatments.

These grants also include incubator grants which focus on small-scale projects investigating bright new ideas in treatment of Sanfilippo syndrome. These small-scale projects should have the potential to generate the kind of results that can attract larger-scale funding.

Deadline for the submission of expressions of interest is April 29, 2016. Successful expressions of interest will be invited to submit a full application in mid-May. Deadline for full applications is June 25, 2016. Funding decisions will be made in August 2016. Visit their Web site: Click here for details.