If you want to know about metachromatic leukodystrophy (MLD), you've come to the right place! We C.A.R.E., we welcome you, and we're glad that you found us!
"... we have a call in to
pediatrician and I know she will ask, what advice are you getting on the MLD Family Discussion List™? I think that about says it all on how valuable this group is."
Often your arrival here comes at a time of great personal trauma due to a recent diagnosis or encounter with MLD. We want you to know that you can count on us for support, information and to help you get connected with others who are also on the MLD journey.
WE C.A.R.E. ...
* Compassion will take you to the MLD Family where you can connect with others.
* Awareness is where you will find what is being done to increase knowledge of MLD and how you can help.
* Research updates the latest in efforts to treat and cure MLD.
* Education leads to MLD-101 where you will find a comprehensive, yet very readable, layman's overview of MLD.
The MLD Foundation is a non-profit 501(c)(3) organization and appreciates your generous support. Please check out our Fund-raisers and MLD Stuff in the boxes below:
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Newborn Screening – Pilot Study launches
Pilot study launches in Washington state
>> See video here.
Newborn Screening – Policy Presentation
Presentation from Emerging and Translational Biology of Leukodystrophies Conference
>> See video here.
US MLD Family Conference™ –
Please join us July 15th-16 in Tarrytown, New York.
>>More here.
Reference Book Recommendation
"Caring for Children Who Have Severe Neurological Impairment" by Dr. Julie Hauer paperback or Kindle editions.
Leukodystrohy Consensus Paper –
The GLIA paper "Consensus statement on Preventive and Symptomatic Care of Leukodystrophy Patients" is now available for download.
Follow our Blog–
The MLD Foundation has a blog - check it out and follow us here.
March, 2014 - Learn about our openNHS initiative for Natural History Studies >>More here.
February, 2014 - MLD Family Compassion Fund™ launches to support families >>More here.
January, 2014 - new MLD Awareness video >>More here.
December, 2013 - Shire using new port and now has 5 centers open. >>More here.
March, 2013 - Gene Therapy Trial completes recruiting–
The initial cohort of patient recruiting is complete as of March 2013. There is a very limited compassionate access phase underway. >>More here.
MEDIA
Empowering Our Children radio interview with Christine Hoffman and Dean Suhr.
>>
Listen here
* NDA = non-disclosure agreement
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