Resources & News

Inheritance

Inheritance

DNA stands for (DeoxyriboNucleic Acid) which is made up of very long chains of   chemical ‘letters’: Adenine (A), Guanine (G), Thymine (T) and Cytosine (C). DNA contains the instructions for our genes. Genes are the instructions for making proteins. Proteins do the work within our cells and body. In humans, most genes are arranged on chromosomes that are found in […]

Ann Moser Award

Ann Moser Award

ALD Connect announced the new “Ann B. Moser ALD Community Award”, an honour which recognizes unusually impactful contributions to the ALD community at-large or major milestones in the history of the disease. The award was shared by Bob Wyborn and Associate Professor Stephan Kemp from the University of Amsterdam.

A letter from Professor Alfried Kohlschuetter

A letter from Professor Alfried Kohlschuetter

I am very grateful for the magnificent work that Elisa Seeger, Jean Kelley, Janice Sherwood, Gina Cousineau and many others are continuing to do in getting New Born Screening (NBS) for ALD throughout the United States and the resultant success. The rest of the world is awake and working on their individual country’s requirements to achieve NBS. Professor Kohlschuetter and […]

To Be of Use

To Be of Use

To Be of Use by Marge Piercy   The people I love the best Jump into work head first Without dallying in the shallows And swim off with sure strokes almost out of sight They seem to become natives of that element, The black sleek heads of seals Bouncing like half-submerged balls.   I love people who harness themselves, an […]

Words for the New Year

Words for the New Year

Another year has come around and like all New Years it brings many changes, hopes, fears and opportunities. As an almost silent contributor I would like to change that this year and particularly for those with any Leukodystrophy or life restricting disorder or disease. For those who have recently received the news that themself, or a loved one or ones […]

ALDConnect Announcements – 11.12.2015

Has your child with CCALD received an allogeneic HSCT in the last two years? If so, please ask your physician about the ALD-103 Study (Protocol), a new data collection study that is now open. The purpose of the ALD-103 Study is to better understand the safety and efficacy outcomes of the standard of care treatment for CCALD–allogeneic hematopoietic stem cell […]

ALDConnect Announcements – 10.22.2015

ALD Connect 2015 Annual Meeting is up on line! Watch all presentations now and ask us questions on Monday 11.02 at 2pm EST during our annual meeting follow-up webinar. Presentations given at the ALD Connect Annual Meeting are now available for viewing on the ALD Connect website. To view items from the annual meeting Click Here ALD Connect will be […]

Nursing Research Topics

Nursing Research Topics

Starting quilters need just a few items that are basic to begin with. Like the majority of interests, quilting has you to be tempted by an unlimited array of products. Get the following basic supplies were create with all by yourself. your quilting type grows and as your capabilities enhance, you can add for your device cache. Machine: there is […]

ALDConnect One Page Summaries

What is ALD? How is ALD inherited? Symptoms of ALD/AMN What Can I do to Stay Healthy? Current Treatments for ALD What is ALD? ALD stands for Adrenoleukodystrophy This combined word is made up from – Adreno – Leuko – Dystrophy Adreno refers to the Adrenal Glands which are found on the top of each of our kidneys Leuko is […]