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Global Genes – 2017 RARE Champion Of Hope Honorees

22nd September 2017

Global Genes®  is one of the leading rare disease patient advocacy organizations in the world. The non-profit organization promotes the needs of the rare disease community under a unifying symbol of hope – the Blue Denim Genes Ribbon®.

Beginning in 2011 Global Genes® has recognised the achievement of individuals all over the world for their contribution to changing the face of rare disease, this year we are very pleased to announce that Taylor Kane has been awarded as one of the Rare Champion of Hope Honorees:


RARE Champion of Hope – Teen Advocacy: Taylor Kane, Advocate, Run for ALD

Shortly after her father’s death from the x-linked genetic disease adrenoleukodystrophy (ALD) when she was five years old, Taylor began volunteering for Run for ALD, a non-profit organization founded by her father which raises awareness and money for ALD research. Now, at age 19, Taylor is the Lead Advocate for the organization, having helped raise more than $200,000 for ALD research. In 2013, she successfully lobbied the New Jersey legislature and governor to enact a law requiring the screening of newborns for ALD. Taylor also testified before an advisory committee of the Secretary of Health & Human Services in support of the addition of ALD to the national Recommended Uniform Screening Panel. In 2015, Taylor, who is a genetic carrier of ALD, founded a support group called Y.A.C. (Young ALD Carriers) to unite, educate and empower teenage and young adult female carriers, and to assist them in effecting positive change through advocacy, social media, and the legislative process.


If you are a young female carrier and would be interested in becoming part of the Y.A.C network on Facebook please click here.


Thank you for your support! ...

We played a Mixed game against LSE today and had a 6-10 loss in a very well fought and fun match! Thank you LSE for being great opponents today! Also, as in the photos, we have all painted our faces the colours of Rare Disease Day which is upcoming on the 28th to show support for ALD Life, the charity who help patients and families of Adrenoleukodystrophy and Adrenomyeloneuropathy. Please help us to provide better awareness and find better treatments. You can help by raising awareness and taking part or donating by texting 'ALDL18 £5' to 70070. Or you can donate on Just Giving here - www.justgiving.com/campaigns/charity/aldlife/rarediseaseday2018 We want anyone and everyone to paint their faces and pass it along! Man of the Match: Aidan Women of the Match: Sarah, Pip, Jess, Amy #LUSL #Ultimate #Ultimatefrisbee #Outdoors #Outdoormixed #Rarediseaseday #warpaint #blueandwhitearmy #Stmarys #simmies #LSE #Beavers #Ostrich #HalfMatchMan #Substitutionsmatter

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