Emory University is looking for families in Georgia with individuals who were diagnosed through newborn screening with ALD, as part of efforts to include ALD in the Georgia newborn screening panel. Participants would be speaking with Emory University via phone or email at their convenience. If you would like to give your input, please reach out to Dawn Laney with Emory University at dawn.laney@emory.edu or 404-778-8518.
Personal Links
Blog
Joe’s website www.mysonjoe.co.uk
Gabriel Pollaco’s website and YouTube page www.gabrielpollaco.blogspot.com and www.youtube.com/user/marquinhosslip?feature=watch
-For those of you that want a translated version of the blog: Translated Version
Fredriks’s ALD-Minnefond website www.ald-minnefond.com
-For those of you that want a translation: Translated Version
Aidan has a Posse! website www.aidanhasaposse.org
James’s web page www.caringbridge.org/nh/jamessturtevant
Rodriguinho Pareja’s website www.rodriguinhopareja.blogspot.co.uk
-For those of you that want a translation: Translated Version
Gui Rodrigues website and Facebook page www.guiguirodrigues.blogspot.com.br and www.facebook.com/LutaDoGuiContraAdrenoleucodistrofia
-For those of you that want a translation: Translated Version
Jack Torrey’s website www.caringbridge.org/visit/jacktorrey
Smile4Jacob’s website www.smile4jacob.co.uk
Tri4joe’s website www.tri4joe.com
Fundación Nicolás’s website www.fundacionnicolas.org
-For those of you that want a translation: Translated Version
Facebook
Remembering Alex Hunt
ALD Support
Raising Awareness of Adrenoleukodystrophy
Leukodystrophy Family Support Roundtable
Luciano’s Journey with ALD
L-E-U-K-O-D-Y-S-T-R-O-P-H-Y
Parents Connecting for Peroxisomal Disorders
Aidan Jack Seeger
Joshua’s Journey Advocating for Newborn Screening of Adrenoleukodystophy
Adrenoleucodistrofia cerebral infantil ligada al cromosoma
Troca-Troca entre mães especiais
João Vitor Portador de Adrenoleucodistrofia
Un Milagro para Abraham
Fundación Laes Leucodistrofias
Fight ALD for Alex
Project Julian
Luke Cardwell
Austin’s Mighty Angels
Prayers for Donovan Swaim and Ald Awareness
Fight Adrenoleukodystrophy (ALD)
Little Warrior Eoryh
Young ALD Carriers
Twitter
@CuringMattofALD
@ALD_Daily