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03-01-2008, 04:23 PM | #1 | |||
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Junior Member
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it is day 15 of my official diagnosis...just sent this message to as many of my friends/family who have email...please think about calling/emailing your congressperson....it could mean 15 million in MS research...
Only 11 Days... Until MS Awareness Week 2008 March 10-17 What will you do? Wednesday, February 27, 2008 Ask Your U.S. Representative to Support $15 Million for MS Research New federal money is now available to multiple sclerosis researchers, thanks to your MS activism. We can build on that momentum in Congress and secure new avenues for more MS research funding. Ask your U.S. Representative (click here) to support a $15 million appropriation to the Congressionally Directed Medical Research Programs (CDMRP) for MS research. Take action before today: * Send a quick email to your Representative. * Call your Representative's Washington, DC, or district office to talk about this issue. Call 1-800-828-0498. * Make an appointment to visit with your Representative or their staff in the district. * Attend a community or town hall meeting. Call the district office for a schedule. For your Representative's contact information, visit www.house.gov. You can use these talking points and background when you speak with your Representative: * A Dear Colleague letter is being circulated in the House by Congressmen Russ Carnahan and Michael Burgess. The letter requests that $15 million be provided for multiple sclerosis research through the Congressionally Directed Medical Research Programs. * Please have Representative ____ sign on the letter by contacting Congressmen Carnahan or Burgess. As a constituent and an MS activist, I encourage your support of this investment in MS research. * [Share how MS has impacted you personally] * Many U.S. veterans have stories and symptoms of multiple sclerosis. Preliminary evidence suggests that Gulf War veterans could have an increased risk. * A study found an unexpected, doubling of MS between 1993 and 2000 in Kuwait, which suggests a potential environmental trigger for MS because of exposure to neurotoxins such as burning oil fields and poison gases. * More than 25,000 veterans being treated in the VHA are living with a diagnosis of MS. A recent study in the Annals of Neurology identified more than 5,000 cases of MS among U.S. veterans that were deemed "service-connected." * MS is a chronic, often disabling disease of the central nervous system and is generally diagnosed between the ages of 20 and 50, the prime of life. The cause of MS is still unknown, the symptoms are unpredictable, and there is no cure. Now is the time to pursue a specific appropriation for MS research in the CDMRP for fiscal year 2009. The deadline to sign on to the Dear Colleage letter is March 14. This program is funded annually through Department of Defense (DoD) appropriations bill. Last year your efforts influenced Congress to include MS as one of the areas eligible to compete for research funds through the DoD research programs in the FY 08. This is the first time that MS has ever been listed. The DoD has an obligation to fund research into MS related to Gulf War service. This research would not only benefit our veterans, but could help move us closer to a world free of MS for all those living with the disease. Click here for more information on the federal money newly available for MS research grants. Thank you for being an MS activist. Join the movement at www.nationalMSsociety.org/advocacy
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1st symptoms--01-27-08 (blurred vision) dx 02-12-08 confirmed with neurologist 02-15-08 spinal tap 03.03.08 started avonex 03-14-08 july 2011-ish....lesions on the spine (at least two!) . started rebif 12-01-11 You gain strength, courage and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, 'I have lived through this horror. I can take the next thing that comes along.' You must do the thing you think you cannot do. Eleanor Roosevelt |
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03-01-2008, 08:46 PM | #2 | |||
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Senior Member
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Volanda,
It is people like you who make a difference for everyone. I am glad you are being proactive with your dx. Thanks! |
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03-01-2008, 08:57 PM | #3 | |||
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Magnate
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hmm I will be at McDonald's Management classes, I fly out the 9th..and take school classes 10th thru 14th....thanks for the info...sarah
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"Thanks for this!" says: | volada (03-03-2008) |
03-03-2008, 01:49 PM | #4 | |||
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Member
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There is not only a MS Awareness Week, but also the NMSF has declared the whole month of March as MS Awareness Month.
Check out my signature and profile.
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03-03-2008, 06:03 PM | #5 | |||
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Junior Member
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Quote:
it is beautiful here today==68 degrees and i am determined to use my anger toward some activism--will keep emailing everyone i know to get behind us on this issue--even emailed the congressman i used to work for to urge him to help us out
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1st symptoms--01-27-08 (blurred vision) dx 02-12-08 confirmed with neurologist 02-15-08 spinal tap 03.03.08 started avonex 03-14-08 july 2011-ish....lesions on the spine (at least two!) . started rebif 12-01-11 You gain strength, courage and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, 'I have lived through this horror. I can take the next thing that comes along.' You must do the thing you think you cannot do. Eleanor Roosevelt |
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"Thanks for this!" says: | ania (03-03-2008) |
03-03-2008, 09:13 PM | #6 | |||
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Member
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If you just got back from a spinal tap...please go lie down!
Then...spread awareness! We at OHG are compiling a list of address to send awareness postcards. I'd be very interest on your thoughts. Please check out the link in my profile and send any addresses you think would be useful to us.
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03-04-2008, 09:39 AM | #7 | ||
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Guest
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It's a "national" month ~ check out this calendar of National Observances... i wonder if there is a world ms day? or a world ms month? that would be a cool campaign to get going it is an important part of a healthy acceptance of this mangy disease... to become active... for your own health, and then beyond ourelves to the health of those after us... maybe the bits we do today can be the catalyst for a cure for our children, and theirs.... think of the money we'd save, and the production we'd gain! without ms.... ...if 'they' don't care that we hobble, maybe they'll care about how much it costs when we have a bunch of hobblers... i encourage folks who may not be the one to write a letter, or join a walk, to find a way... even by staying here on message boards to support others... find a way to give... to use ms as your strength.... let ms be on your side... let it be what makes you powerful, unique, and able to do more now than you could before... peace friends! onward and upward! |
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03-04-2008, 10:01 AM | #8 | |||
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Grand Magnate
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Thank you for this reminder. I sent out an email to all my friends and family telling them that every little bit helps, even if it's just a little bit of volunteer time if money's tight.
I even signed up to do the walk our chapter is doing in April. I'm still mobile so far, and it's at our zoo. That will be fun in itself.
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Strength comes in all types of packages, even those you don't expect Dx'd MS 2007, Fibro 2009 |
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"Thanks for this!" says: | volada (03-04-2008) |
03-04-2008, 11:40 AM | #9 | |||
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Member
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think of the money we'd save, and the production we'd gain! without ms.... ...if 'they' don't care that we hobble, maybe they'll care about how much it costs when we have a bunch of hobblers...
Wow, that is powerful! How many people have to be effected before we're no longer an "orphan" disease? When the numbers increase even more...the burden to our society will also rise. I live with MS all around me, it's an epidemic in my world. My half-sister and I both have MS. Her father had MS (we share the same mother) who would have thought with my odds of 1 and half % that I'd get it! My best friend from college was just DX, a teacher who asks me if she will be able to teach again. She also asks, "will we never travel like we dreamed of in college and visit galleries around the world?"...I answer, "we have different dreams now." We both lived in the same 2 family house at seperate times. On that property and the neighbors 5 people have been DX with MS! In my world MS is'nt an "orphan" disease.
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This space is empty Last edited by ania; 03-04-2008 at 12:06 PM. |
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03-04-2008, 07:34 PM | #10 | |||
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Junior Member
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Quote:
__________________
1st symptoms--01-27-08 (blurred vision) dx 02-12-08 confirmed with neurologist 02-15-08 spinal tap 03.03.08 started avonex 03-14-08 july 2011-ish....lesions on the spine (at least two!) . started rebif 12-01-11 You gain strength, courage and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, 'I have lived through this horror. I can take the next thing that comes along.' You must do the thing you think you cannot do. Eleanor Roosevelt |
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