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Donate To Spondylitis / Spondyloarthritis Research #251302
04/25/13 02:25 PM
04/25/13 02:25 PM

C
Chris Miller
Unregistered
Chris Miller
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C



From Chris Miller, Director of Programs at the Spondylitis Association of America (SAA). Originally printed in the Summer 2013 issue of SAA's news magazine, Spondylitis Plus

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The Spondylitis Association of America (SAA) turns 30 years young this summer (2013), and I am proud to have been with SAA for nearly a third of its existence. This past decade has been a whirlwind of progress as we have continued to lead the charge in spondyloarthritis research. During this year alone, we have driven a number of exciting, essential research initiatives:

Spondyloarthritis Treatment Guidelines] - After helping fund the project, SAA is collaborating with the American College of Rheumatology (ACR) in developing a much needed set of standardized treatment guidelines for spondyloarthritis. These guidelines will address the most commonly encountered clinical situations when treating ankylosing spondylitis and axial spondyloarthritis patients. Additionally, the new guidelines will address preventive care, disease activity monitoring, pharmacological treatment and special patient populations including children with juvenile-onset spondyloarthritis.

This is the first time in history that ACR has collaborated with another organization in developing such guidelines.

Spondylitis Patient Registry - Funded initially by SAA, the patient registry is a database - a compilation of data on people with ankylosing spondylitis. In this case, the registry is a combination of three current patient databases that have been used in ankylosing spondylitis research. Thus, we are currently building a new database that can look at thousands and potentially tens of thousands of patients with AS and see health trends, disease severity over time, age, medication effectiveness, complications and more.

The Triple-A (Australo-Anglo-American) Spondyloarthritis Consortium, or TASC, has identified 20-plus genes linked to ankylosing spondylitis since 2007. In the future, these genes can lead to new treatments and possibly earlier diagnosis.

SAA originally ignited spondylitis genetic research in the US and continues to participate in the ongoing TASC study by encouraging enrollment.

For 30 years, we have been a primary launch point for spondyloarthritis research in the US. Together with our supporters we will continue to do everything in our power in the quest for the cure.

Sincerely,

Chris Miller
Editor-in-Chief, Spondylitis Plus
Director of Programs, SAA

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Ways to Donate and Support Research, Education & More:

Click Here For SAA Membership >>>

You Can Make A Donation Here >>>

Click Here For Other Ways To Donate >>>

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Thank you for your support!

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Last edited by cjrodri23; 08/16/18 09:31 PM.
Re: Donate To Spondylitis / Spondyloarthritis Research [Re: ] #251405
04/27/13 11:45 PM
04/27/13 11:45 PM

C
Chris Miller
Unregistered
Chris Miller
Unregistered
C



NOTE:

These forums are provided free of charge by the Spondylitis Association of America (SAA) - a charity / nonprofit organization that was founded in 1983 by people affected by ankylosing spondylitis, a crippling form of spinal arthritis that strikes young people. Prior to that time, there was no support network, no resource for educational materials, not even a single pamphlet for people diagnosed with the disease. SAA was the first and remains the largest resource in the United States for people seeking information on AS and related diseases. Our mission is to be a leader in the quest to cure AS and related diseases, and to empower those affected to live life to the fullest.

Click here to learn more about the Spondylitis Association of America >>>

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Click Here For SAA Membership >>>

You Can Make A Donation Here >>>

Click Here For Other Ways To Donate >>>

Last edited by cjrodri23; 08/16/18 09:28 PM.
Re: Donate To Spondylitis / Spondyloarthritis Research [Re: ] #258563
09/23/13 09:41 PM
09/23/13 09:41 PM
Joined: May 2004
Posts: 1,530
Minnesota
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Ken Delano Offline
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Ken Delano  Offline
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Joined: May 2004
Posts: 1,530
Minnesota
FYI folks. Through the end of October, 2013 the Jean and E. Floyd Kvamme Foundation will match your donation to the SAA. So if you have been thinking of donating to this great cause now is an excellent time to do so. Contact the folks at the SAA to find out how to donate under this program if you have not received the form from them already.


AS/PsA DX in 1988

Retired on disability
in 2005 at age 44
Re: Donate To Spondylitis / Spondyloarthritis Research [Re: ] #261327
12/03/13 10:30 PM
12/03/13 10:30 PM
Joined: Jun 2012
Posts: 550
Los Angeles, CA
RAHMBA Offline
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RAHMBA  Offline
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Joined: Jun 2012
Posts: 550
Los Angeles, CA
Today is 'Giving Tuesday'. Join me in making a donation to the SAA. I certainly appreciate the forum all year long :-) Gd bless,


AS, U C, Iritis, migraines. HLA-B27neg. Yoga (instructor) & spin. No meds at this time. Dx 1989. SAA member/donor since 1993. All my posts are personal opinion/feelings and do not represent the SAA. Help find a cure & support others by donating to the SAA.
Re: Donate To Spondylitis / Spondyloarthritis Research [Re: Anonymous] #279502
11/28/17 08:04 PM
11/28/17 08:04 PM
Joined: Jun 2012
Posts: 550
Los Angeles, CA
RAHMBA Offline
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RAHMBA  Offline
Registered Visitor

Joined: Jun 2012
Posts: 550
Los Angeles, CA
It's Giving Tuesday again!!!!

The SAA website has been updated since Chris' original post. Chris is forefront in my thoughts today.

Here are the new links:

To Become a Member:
http://www.spondylitis.org/Shop/Categories/membership

To Make a donation: http://www.spondylitis.org/Shop/Product/Donations

Other Ways to Donate: http://www.spondylitis.org/Donate


AS, U C, Iritis, migraines. HLA-B27neg. Yoga (instructor) & spin. No meds at this time. Dx 1989. SAA member/donor since 1993. All my posts are personal opinion/feelings and do not represent the SAA. Help find a cure & support others by donating to the SAA.

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