ALDconnect – you are not alone

March 1, 2016

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    Kathleen after visiting Senator Elizabeth Warren
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    John getting his Black Belt
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    John and his sister Charlotte
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    ALD newborn screening costs $3-$5. . . .A late diagnosis can cost more than $7 million.
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Kathleen O’Sullivan-Fortin shares her story with Joyce and Robin. Following her son’s diagnosis with X-linked adrenoleukodystrophy (ALD) she took an active role as patient advocate for her son, learning about the condition and researching the best options for his care.

With a group of physicians, research scientists, patients, and patient advocates, she helped create ALD Connect.

ALD Connect, Inc is an innovative marriage of ALD researchers and ALD families/advocates that whose goal is to rapidly improve the quality of life for ALD patients/families and eventually eradicate the disease entirely. To accomplish these tasks, ALD Connect has organized itself into both a clinical trial network and a patient network, designed to facilitate communication and innovation among all stakeholders. The various workgrups of ALD Connect function in concert to facilitate patients, researchers, and industry partners to advance our scientific understanding of ALD and its cure through shared, focused communications (e.g. educational seminars to inform patients; surveys to inform researchers) and meetings.

For more information, see
ALD Connect, http://aldconnect.org
United Leukodystrophy Foundation, http://ulf.org

Posted by JoyceGraff
Related Topics: Adrenal Leukodystrophy (ALD), Finding others with the same challenges, Podcast
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One Comment

  1. […]  Would earlier diagnosis make a difference in the outcomes for children with ALD? What if we could change the diet in infancy, as we do for PKU? New York and six other states are now screening newborns.  Will Massachusetts join them?  http://www.powerfulpatient.org/aldconnect/ […]

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