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Cure JM a finalist! 250,000 for research!!!!

Cure JM a finalist! 250,000 for research!!!!

I just wanted to drop a quick THANK YOU for all of you out there who diligently texted and facebooked and on-site voted for Cure JM to win in the Pepsi Refresh Challenge.  Oh my gosh, I still can’t believe we won!!!!!  It’s amazing, wonderful, incredible, and oh so needed! Thank you. All the children with JM have some more hope for a cure with the 250,000 prize money to go towards research.

Love to you all,

Make Juvenile Myositis A Memory!

Make Juvenile Myositis A Memory!

Pepsi is hosting a contest and is giving away 250K to the winner! I’m supporting Make Juvenile Myositis a Memory by The Cure JM Foundation.  About 5,000 kids in the US are affected by this disease, putting it in the ‘rare disease’ category. But just because that number isn’t astronomical, doesn’t mean that they don’t need the funding. These kids are suffering with a painful, debilitation, potentially life threatening disease.

Here’s a video about Emma’s story with JM-

Will you please vote with me and help these kids have a chance at some research grants?  You can go to the Pepsi site and vote at http://www.refresheverything.com/makejmamemory and also on Facebook at the Pepsi Refresh Voting App. You can vote once each day on each site for this cause, but you get to vote 10 times in each day if you have other causes you support.  Thanks in advance, we really have a chance guys. We are in 12th place right now with over 1,000 applicants and there is 7 days to go! Please vote each day if you can.  Thank you!

Arthritis and the Economic Stimulus Bill

Arthritis and the Economic Stimulus Bill

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Whenever I receive an update or an alert from the Arthritis or Lupus foundations, I pass it on here.  This evening I was checking my email and saw this from yesterday.  I was talking to my husband about what’s going on right now with the Senate yanking the 5.8 billion Prevention and Wellness Fund from it’s bill, and he told me that pulling for money (hoping/praying) to fund arthritis research isn’t what the economic stimulus is all about.  Not his exact words, (he’s asleep now and I want to wake him up and ask him what he said again)  Basically he’s saying that although it’s a great thing, putting money towards arthritis research isn’t going to positively help the economy short term and that’s what the stimulus package is all about.  Long term for sure, but as for helping out now, nuh uh.  And I say as an arthritis sufferer, I DON’T CARE.  Is that wrong?  Should I care that the money that will go towards research isn’t really what the economic stimulus package is really all about?  That’s one man’s opinion anyway, what do you think?

 

From the Arthritis Foundation:

Urge Congress to Fund Arthritis Research and Prevention!   
Take Action!

Action is Needed Now

On Tuesday, the Senate passed an $838 billion economic stimulus bill.  The House passed its own $819 billion version of the bill on Jan. 28.   House and Senate negotiators will meet quickly to resolve differences in the wide-ranging package of spending and tax cuts (HR 1). Congress wants to pass a final bill in both chambers and send it to President Obama before leaving for a scheduled week long recess at the end of the week.

Arthritis Prevention:  The Senate removed entirely a $5.8 billion Prevention and Wellness Fund provision from its bill.  The House of Representatives included $3 billion in public health funding in its version of the bill.  The Arthritis Foundation urges Congress to include this important House provision to fund potential arthritis programs in the stimulus bill.   Investing in arthritis prevention at the Centers for Disease Control and Prevention, and in states across America, is not only an investment to help stimulate the economy, but also an investment in a healthier America.  Arthritis is the most common cause of disability in the United States.  Investing in prevention has a proven return. For every $1 invested in community level prevention, there is a savings of over $5 dollars in public and private health care expenditures within just 5 years. Support for the CDC and evidence based state and private programs to combat arthritis will help reduce disability, pain and health care costs for the millions of Americans with arthritis.

Arthritis Research:  As we alerted you last week, the Senate did include $10 billion in funding for the National Institutes of Health.  However, no such provision exists in the House bill.  The Arthritis Foundation urges Congress to retain this Senate passed critical funding for our nation’s biomedical research enterprise.  In 2007, every $1 million that the public invested in NIH generated $2.21 million in new business activity across the nation.  Within weeks, funding for high-quality, peer reviewed arthritis research projects could be allocated nationwide, stimulating local economies through salaries and purchase of equipment, laboratory supplies, and vendor services.

Please contact your Members of Congress NOW about arthritis research and prevention funding in the American Recovery and Reinvestment Act of 2009.

Here’s an article on the subject if you’d like to check it out.  Until next time

Michelle

 

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Good News from the Arthritis Foundation

Good News from the Arthritis Foundation

I just got this email from the Arthritis Foundation and instead of me trying to explain it ( I have no brain today)  I’m just copying and pasting the e-mail.  By the way, I’m advocate…   🙂

Arthritis Legislation Update
Dear Advocate,

As we near our nation’s birthday we wanted to share some preliminary good news regarding your advocacy efforts. Last week, the Senate Appropriations Committee recommended that the National Institutes of Health receive a 3.5% increase overall. Although the Arthritis Foundation and many other organizations were requesting a 6.5% increase for NIH, the 3.5% increase represents the first time in six years that funding for NIH research has kept pace with biomedical inflation. The National Institute of Arthritis and Musculoskeletal and Skin Diseases received a 2.9% increase with a recommendation for $523 million in Fiscal Year 2009. Due to Arthritis Foundation advocacy, the Committee specifically recommended the following in its approved bill:

“Arthritis – the Committee supports the establishment of a national data collection system to ensure that the safety and effectiveness of new arthritis treatment is understood and that they are applied in the most beneficial manner, especially in the case of childhood arthritis. The Committee also notes the strong need for a national network of cooperating clinical centers dedicated to the care and study of children with arthritis.”

This Committee Report language was first shared with our advocates and Congress during the Advocacy Summit in Washington DC. This language is extremely important and indicates to NIAMS that Congress considers juvenile arthritis a priority and one that deserves more attention.

The Senate Appropriations Committee also recommended a 1.2% increase for the Centers for Disease Control and Prevention, raising their budget from $6.4 billion to $6.5 billion (a $76 million increase). Due to the advocacy efforts of the Arthritis Foundation, including the Chapters, our grassroots advocates and our Arthritis Ambassadors, the arthritis program at CDC received an increase of $500,000, which is nearly a 4% increase, for $13.5 million in Fiscal Year 2009. Once both the full House and Senate pass their committees’ versions, the differences between the two must be reconciled, passed again and then sent to the President for his signature. The appropriations process is far from over, and we will be reaching out to you in the coming months to continue your advocacy work to let Congress know more needs to be done for people with arthritis. Thanks to all of you for continued advocacy efforts to increase federal attention and resources for both adults and children at the NIH, CDC and in states throughout the nation.

Have a happy and safe July 4th!

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