The immediate need for funding for Sarcoidosis
- by: Timmons Organization for Sarcoidosis Support
- recipient: NHIC, Legislators, Senators, Govenors, State Representatives on all levels
Sarcoidosis is an autoimmune disorder that has no known cause and no cure. Very few doctors are even familiar with this disease and if the medical community is following very antiquated treatments and statistics, Sarcoidosis will continue to be thought of as "rare". NORD (National Organization for Rare Diseases, has been attempting to obtain additional monies for research, education and genetic testing.
Back in 1991, the first President Bush acknowledged, IN CONGRESS, the need for a National Sarcoidosis Awareness month and he decreed that August 29th was to be National Sarcoidosis Awareness Day. President Bush signed this Proclaimation on August 15, 1991. This was Proclaimation 6322. In 2008, a resolution was again put before Congress designating April as Sarcoidosis Awareness Month. As of today, January 21, 2011, we still do not have a national day or month of awareness. We are still fighting for recognition and funding for research. Sarcoidosis has been put in the "autoimmune disorders" category, but we do not see anywhere near the amount of goverment funding that other disorders receive. Sarcoidosis isn't a recognized disability through the Social Security Administration despite our best efforts to get it recognized as a "Compassionate Allowance".
The need for awareness, recognition and education is NOW. Sarcoidosis is proving to not be as "rare" as what was once thought. We need to get our elected officials to stand with us as we continue to fight for funding.
If you have Sarcoidosis, or know someone who does or has lost their battle to this disease, please sign this petition and tell our elected officials that we are tired of sitting back and waiting for "our" turn. Sarcoidosis is a disease who's time has come! If you would like more information on Sarcoidosis, please go to our website: www.sarctoss.com, or email us directly at sarctoss@yahoo.com. We all MUST work together to make the change. There is strength in numbers. Can we count on your support?
Back in 1991, the first President Bush acknowledged, IN CONGRESS, the need for a National Sarcoidosis Awareness month and he decreed that August 29th was to be National Sarcoidosis Awareness Day. President Bush signed this Proclaimation on August 15, 1991. This was Proclaimation 6322. In 2008, a resolution was again put before Congress designating April as Sarcoidosis Awareness Month. As of today, January 21, 2011, we still do not have a national day or month of awareness. We are still fighting for recognition and funding for research. Sarcoidosis has been put in the "autoimmune disorders" category, but we do not see anywhere near the amount of goverment funding that other disorders receive. Sarcoidosis isn't a recognized disability through the Social Security Administration despite our best efforts to get it recognized as a "Compassionate Allowance".
The need for awareness, recognition and education is NOW. Sarcoidosis is proving to not be as "rare" as what was once thought. We need to get our elected officials to stand with us as we continue to fight for funding.
If you have Sarcoidosis, or know someone who does or has lost their battle to this disease, please sign this petition and tell our elected officials that we are tired of sitting back and waiting for "our" turn. Sarcoidosis is a disease who's time has come! If you would like more information on Sarcoidosis, please go to our website: www.sarctoss.com, or email us directly at sarctoss@yahoo.com. We all MUST work together to make the change. There is strength in numbers. Can we count on your support?
We the undersigned, are respectfully submitting this petition for your consideration. It is our goal and objective to raise as much awareness, and as much funding, as possible for the disease, Sarcoidosis. Everyday, this disease affects the lives of many individuals around the world. It does not discriminate by age, gender, ethic background, geographic region or financial status. The effects of this disease can be long term, disabling and very often, fatal.
We are husbands, wives, fathers, mothers, sisters, brothers, daughters, sons, aunts, uncles, friends, neighbors and co-workers. We are imploring you all, our elected officials, to please take a moment to read this petition and recognize that we are in desperate need of YOUR help. We are asking that you please take a few minutes to read what Sarcoidosis is and how it affects us. We are asking that you help us to lay into place what was promised to the Sarc community in 1991 and again in 2008. We are asking for your help in getting more money directed and earmarked for Sarcoidosis research. We are asking that you help us make a difference in our lives and the lives of future generations. And we are asking that you help us recognize the brave people who have lost their fight with this disease. Please don't let their deaths be in vain.
Thank you, from the bottoms of our hearts, for taking the time to read our petition. We look forward to working with you on ways to bring Sarcoidosis into the limelight where it needs to be.
Very sincerely yours;
Sign PetitionSign PetitionWe are husbands, wives, fathers, mothers, sisters, brothers, daughters, sons, aunts, uncles, friends, neighbors and co-workers. We are imploring you all, our elected officials, to please take a moment to read this petition and recognize that we are in desperate need of YOUR help. We are asking that you please take a few minutes to read what Sarcoidosis is and how it affects us. We are asking that you help us to lay into place what was promised to the Sarc community in 1991 and again in 2008. We are asking for your help in getting more money directed and earmarked for Sarcoidosis research. We are asking that you help us make a difference in our lives and the lives of future generations. And we are asking that you help us recognize the brave people who have lost their fight with this disease. Please don't let their deaths be in vain.
Thank you, from the bottoms of our hearts, for taking the time to read our petition. We look forward to working with you on ways to bring Sarcoidosis into the limelight where it needs to be.
Very sincerely yours;
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