News and Events

AC4ALD

Welcome to the Awareness Campaign for Adrenoleukodystrophy Site!

AC4ALD - Awareness Campaign for Adrenoleukodystrophy - AC4ALD

Attention please: This page and the AC4ALD site is still in the progress of refinement! Please bare with me as I am doing all of this while caring for a post transplant ALD boy! Yes ALD is that important that I am doing this while I care for my number one priority, my children! This is for all ALD families past, present & future!

AC4ALD NEWS-

September 2009 - Leukodystrophies NEED Your Support - Join the world in recognizing Leukodystrophy Awareness - Wear & display Navy Blue the color for Leukodystrophies.

(8/11/09) 3 Brothers Treated For Rare Genetic Disorder In MN. From WCCO.com out of Minneapolis - ALD news story.

(7/09/09) Devastating Diagnosis for Colorado Springs Family. From KKTV.com

(7/09/09) As he turns five, Marc prepares for transplant. From the Impartial Reporter.

(6/23/09) IMPORTANT! PLEASE READ! Click on this LINK, help a family get their four year old the treatment he needs to hopefully halt the Progression of ALD!

(6/01/09) FightALD.org Awareness Across America News - New blog posted today, "The Challenge Continues." Janis Sherwood has the next leg of her trip mapped out take a peak at her blog as she shares stories and photos of the trip along the way.

(5/27/09) The Stop ALD Foundation reports ALD gene therapy trial data presented at ASGT today. First time a lethal CNS disease has been successfully treated by gene therapy - via StopALD on Twitter

(5/26/09) The Great British Duck Race - Adopt a duck on behalf of ALD Life. Anyone around the the world can adopt a duck on behalf of ALD Life. Duck Day, the day of the race is September 6th, 2009. Adopt a duck and help them beat last years record of 175,000 ducks set in the same location.

(5/21/09) Looking for some assitance from those in the Adrenoleukodystrophy and Leukodystrophy related fields of awarness and seeking for a cure. To all Foundations and those that seek to raise awareness. Please consider advising ac4ald.com of your upcoming events, fundraisers, walks and benefits. Use the form below to mail notice of such events to ac4ald.com. I will do my best to see to it that the event gets posted. Thank you all and bare with me I am only one person.

(5/19/09) AC4ALD continues to grow and gain strength. Please bookmark this page and the main website. Check back often to see new developments as this campaign progresses.

Adrenoleukodystrophy in the News and Published Press Articles-

June 10th, 2009 - From the Fermanagh Herald - Enniskillen, Northern Ireland, UK - Help Marc find a cure! - Read the article if you will, help all the ALD boys around the world find a cure!

May 18th, 2009 - South London Press Article - "Brothers with brain disease defy odds" - Please be advised this link is fine, us caution clicking on the link to ALDLife in the article. A friend advised it may have web related issues. Be sure your virus software is up to date.

June 1st, 2008 - His parents' battle to save him inspired the film Lorenzo's Oil. Now Lorenzo Odone's sister writes movingly of a life that taught her the meaning of hope. Full Story by Christina Odone.

EVENTS
ALD & Leukodystrophy related upcoming-

EVERY STEP WALK - A national walk launched by Hunter's Hope Foundation to educate our country on the inequality of Newborn Screening from state to state. Here are the upcoming walk dates;

September 12th, 2009 - Buffalo, NY
September 13th, 2009 - Oceanside, CA
October 31st, 2009 - Raleigh/Durham, NC
December 12th, 2009 - TX

#xald - Twitter Search

http://search.twitter.com/search?q=%23xald

Do you have an ALD or Leukodystrophy related News or Event and would like it posted here!

Send AC4ALD the information including a site link if you have one and I will post it on this page.

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