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The latest Alpha-1 news and information 
Girl on computer Did you miss an Education Day or National Conference? No worries! We have recorded and posted past presentations from our education events and you can watch them anywhere and anytime! 

 

September 2012

A new collaboration based at the University of Cambridge
Hope in the discovery of new medicines to treat liver disease

Research_Liver A partnership between the University of Cambridge and global pharmaceutical company GlaxoSmithKline (GSK), will build upon the work of researchers who have identified a molecular mechanism that plays a major role in the life-threatening liver disease that develops in a population of patients with a particular mutant gene. According to Professor David Lomas, "This partnership brings together our collective expertise in target biology and drug discovery to tackle an unmet medical need and by teaming up with GSK, we have a great opportunity to turn our research into effective treatments."  

 

Click here to read more.

Almost there - Operation 100!    

Fundraise, build awareness and touch a life...    

Goal as of 912 It's not too late to participate in our annual fundraiser, Operation 100!   

 

Right now, we are halfway there.  Participation is simple and fun. Raise a minimum of $100 from family and friends. The goal is for the community to raise $10,000.  

 

This is also a great way to build Alpha-1 Awareness and touch somebody's life.  

 

For more information, contact Genevieve Paul at either [email protected] or 305-648-0088 ext. 14.  

 

Start fundraising online! 

Virtual Telecall on September 18th at 9:00pm ET   

Medication Adherence in Lung Transplantation    

SGL_on the phone

A Pre and Post Transplant Virtual Support Group Telecall will be taking place on Tuesday, September 18th at 9:00 PM EDT. The topic is Medication Adherence in Lung Transplantation. The speaker is Holly B. Meadows, Pharm.D., BCPS, Clinical Specialist - Solid Organ Transplantation, Medical University of South Carolina.  

 

Click here for more information.  

Upcoming Medicare Webinar on October 2nd, 2pm-3:30pm   

Choosing the plan best for your health and budget needs during Medicare Open enrollment  

Medicare_webinar During the open enrollment period through October 15th and December 7th, it is critical for you to make the health plan selections that meet both your health and budget requirements. Those who fail to enroll during this period may effectively be locked out of coverage until Jan. 1, 2013.  

 

This webinar, hosted by the Centers for Medicare & Medicaid Services, is a learning opportunity to help you receive the maximum coverage available.  

 

Call-in information will be announced soon by a special announcement.  

Two Upcoming Education Days    

Middle America is the place to be on September 22nd  and October 6th 

Education Day participant In addition to the restaurants, neighborhoods and beauty in the center of the country, there will be two Alpha-1 Education days. The programs will be packed with great topics such as Alpha-1 Liver Disease in Children & Adults, Lung Transplants and more.

 

Register today and view the agenda for Milwaukee, WI  

 

Register today and view the agenda for Portsmouth, OH  

 

To register by phone, please contact the Alpha-1 Association at 800-521-3025, Ext 11. Hope to see you soon!   

A new State of the Air� smartphone application  

Providing vital health recommendations and more 
Iphones Despite continued improvements in improved air quality across the country, unhealthy levels of air pollution still exists across the nation. The American Lung Association has created a new State of the Air� smartphone application, a life-saving resource for people living with lung disease like asthma, Alpha-1, COPD and people with heart disease or diabetes. Depending on the severity of the day's air pollution, the phone's application pushes out alerts if local air quality is code orange or worse.

Click here for more information

Obtaining a state proclamation 

Raising the visibility of Alpha-1 throughout the country 
MichiganProclamation
Advocates receiving a state proclamation during last year's Alpha-1 Awareness month

Having a Governor or Mayor issue a proclamation helps raise the visibility of Alpha-1. If you are an Alpha-1 Grassroots Advocate, this is a wonderful project to educate your local governor and other local elected officials about issues important to Alphas, i.e. Medicaid issues, genetic discrimination concerns, local smoking bans, clean air initiatives in your community, etc. To learn more about it, click here: http://www.alpha1.org/advocacy/obtain-an-alpha-1-awareness-month-proclamation.  

 

The process of obtaining a proclamation can take 2 months. If you would like to obtain one, please let us know by clicking here:

 

We gratefully recognize the following as our 2012 Core sponsors

 
 This E-News is a publication of the Alpha-1 Association  
  
The mission of the Alpha-1 Association is to identify individuals affected by Alpha-1 Antitrypsin Deficiency (Alpha-1) and to improve the quality of their lives through support, education, advocacy and to encourage participation in research.

 

Patient Information Hotline: (800) 245-6809

 

Genetic Counseling Center: (800)-785-3177

 

Request a Peer Guide: (800) 245-6809

 

Click here to view a directory of the association staff

 

Website:  

www.alpha1.org 

 Table of Contents

Hope in the discovery of new medicines
Operation 100 Campaign
Virtual Telecall
Upcoming Webinar
Upcoming Education Day
A new State of the Air® smartphone application
Obtaining a state proclamation
Quick Links

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The Alpha-1 Association's Genetic Counseling Program  
  The Alpha-1 Association's Genetic Counseling Program (1-800-785-3177) offers free phone-based confidential information and resources to Alphas, family members and medical professionals on the genetics of Alpha-1 and provides information on testing options.
Private Health Insurance Toolkit    
The toolkit includes fact sheets, resources, worksheets and an extensive glossary of insurance terms to help you compare private health insurance plans.

Life Choices Package 
The Life Choices package includes many resources and guides for end-of-life planning for patients and their families. It includes information on the 5 Wishes Program, the health care power of attorney, advanced directives and other resources. 

To order these and any other resources, please click here.