Rare Disease Day US

I am a part of Rare Disease Day US having Alpha-1 a condition that effects the liver and the lungs. I was diagnosed in 2000 and have been a carrier since birth as with all Alpha One patients. I have been a strong online advocate for Alpha One Antitrypsin Deficiency and have a page dedicated to my pursuits.https://www.alpha1.org/latest-news/spreading-awareness-through-social-media Please support me in my fight against  Alpha One for the cure and Rare Disease Day.  Thursday, 29 November 2012 20:53We applaud everyday heroes who have stepped up to declare “Alpha-1 Awareness Starts with Me!” Creating Alpha-1 awareness in your community is one of the most important action you can take to encourage testing and possibly change someone’s life. April Sasser from Conyers, Georgia is no stranger when it comes to creating awareness in her community. According to Sasser, “I started spreading awareness with Social Media back when MySpace was popular. Now I am active in posting my story, photos and other Alpha-1 related news on both Facebook and on my Alpha-1 Community blog at Covington News. As a peer specialist, I have also spoken about Alpha-1 to over a hundred people. I was diagnosed with Alpha-1 at the age of twenty-eight. Four out of five of my children have Alpha-1 too. Awareness about this condition can help people become diagnosed earlier allowing them to get the support they need. Awareness may also lead to earlier detection, which could save precious lung function. Family history is also important to me. With awareness about this condition, families can better understand where they came from and thus better understand where they are going.” If you have created awareness by writing a letter, getting a proclamation, talking to a family member, sharing a button, spreading the word on Facebook or other, please e-mail Jonathan Welsh, Advocacy Manager at:jwelsh@alpha1.org so both you and your efforts can be highlighted. 

rarediseaseday

 

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