Seventh Newsletter

Seventh Newsletter

To state the blatantly obvious the vast majority of us are living in a time that has never been experienced before. Not since World War 2 have we been called upon to self discipline and live with our own company and have little social reaction. Rarely in living history has it been applicable to all countries of the world in and for a unified cause.

Adrenal Crisis Advice

Adrenal Crisis Advice

In this time of transition with the Coronavirus or COVID-19 creating changes in our lives it is most important for all of those who have Primary Adrenal Insufficiency and Addison disease not to be fearful. There is absolutely no evidence from the World Health Organisation or Science that those with adrenal insufficiency are at an increased risk of contracting COVID-19. […]

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 – a Poem by Marge Piercy

To Be of Use – a Poem by Marge Piercy

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 ox to […]

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 […]