Dear friends,
I wanted to let you know about a new petition I created on We the People, a new feature on WhiteHouse.gov, and ask for your support. Will you add your name to mine? If this petition gets 25,000 signatures by November 13, 2011, the White House will review it and respond!
We the People allows anyone to create and sign petitions asking the Obama Administration to take action on a range of issues. If a petition gets enough support, the Obama Administration will issue an official response.
You can view and sign the petition here: http://wh.gov/2oq (this is not SPAM, please pass on to others to pass on to their friends)
Here’s some more information about this petition: SUPPORT more aggressive SARCOIDOSIS RESEARCH, add SARCOIDOSIS & it’s Complications to SSA Compassionate Allowance List!
Why Sarcoidosis Research and Awareness is Important! There are three very important elements to making strides with Sarcoidosis:
#1: Awareness, #2: Education, the last but most important is #3: Sarcoidosis Research
Why do we need Sarcoidosis research? Even though over recent years some progress has been made in recognizing various symptoms of Sarcoidosis it is evident that there is still a great need to obtain more information about this disease in order for doctors to become better equipped at diagnosing Sarcoidosis. Due to this overwhelming lack of medical knowledge about Sarcoidosis that exists, the true number of people who are affected by this disease and the origin or cause of Sarcoidosis will continue to be a mystery! It is very dibilitating and often fatal!
On October 13, the Social Security Administration added thirteen more diseases to their compassionate allowance list, but again Sarcoidosis was not one of them. Most who try to get disability due to Sarcoid have a very hard time, some hire lawyers, or die in the process.
This compassionate allowance list will give the SSA intake personnel guidelines for Sarcoidosis and it’s complications to help determine there is an actual disability. (A surprise announcement by Social Security Commissioner Michael Astrue headlined Day 3 of the U.S. Conference on Rare Diseases and Orphan Products, sponsored by NORD and DIA. Speaking in a luncheon address, Commissioner Astrue announced that 13 additional conditions, all of which are rare, have just been added to the list of Compassionate Allowances.
The Compassionate Allowances Program fast-tracks disability decisions to ensure that Americans with the most serious disabilities receive their benefit decisions within days instead of months or years.”I have good news for the people in this room,” Commissioner Astrue told the approximately 400 participants in the NORD conference. “Today, we are adding 13 more conditions to the Compassionate Allowances list.” In July, at a Capitol Hill event hosted by the Social Security Administration, Mr. Astrue, NORD President and CEO Peter L. Saltonstall and others celebrated the milestone of 100 medical conditions on the list. Yesterday’s announcement brings the total to 113. “
This year, from 3.2 to 3.3 million people will apply for benefits,” Commissioner Astrue said. “Approximately 150,000 people have received Compassionate Allowances this year, typically receiving disability benefits in two weeks or less.” Read the SSA press release, which includes the list of the 13 medical diagnoses. ‘
Emma Carroll, Founder/ Executive Director, JSOF
http://www.facebook.com/sarcoidosis
832-248-6621
http://health.groups.yahoo.com/group/sarcoidosisawareness/
http://jsof.org
When we are conscious of our personal uniqueness and our universal nature, we express ourselves creatively. In this way we fulfill our dreams and our life purpose.” — Andrew Schneider
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