Friday, March 07, 2008

MS Awareness Week

March 10-17, 2008

Suggestions from the National Multiple Sclerosis Society Website:

Commit to seven days of action and take simple daily actions throughout the week that make a difference

Send an action alert to your federal representative asking for an increase in MS research

Watch the Moving Forward film festival debut on Second Life

If you haven’t committed to seven days of action, there is still time to get involved

Check out what our corporate partners are doing to support the MS movement through our new Movement Marketplace

Sign up for a Bike MS or Walk MS event – if you already have, ask two friends or family members to join you!

Thank you for moving us closer to a world free of MS

Personally, I'll be in Sacramento CA March 10-12 attending the California NeuroAlliance Conference, visiting State Assembly Members/Senators and supporting (or maybe even opposing) legislation that impacts the lives and caregivers of those with a wide range of Neurologic conditions.

Then, on the 14th I will attend an Emergency Preparedness Workshop sponsored by the California Volunteers, the newest cabinet level department on the Governor's staff.

I'm still looking for contributors to my Walk MS fund!

Thursday, March 06, 2008

In an Email from the MS Action Network

Announcing the New Congressional MS Caucus in the Senate

Senator Byron Dorgan (ND) and
Senator Orrin Hatch (UT)
have agreed to serve as the co-chairs of the new Congressional Multiple Sclerosis Caucus in the U.S. Senate. We are confident that the leadership of these two prominent Senators will help raise awareness and provide education about MS on Capitol Hill. Like the House MS Caucus, the Congressional MS Caucus in the Senate provides MS activists with champions in Congress. When we have an MS issue that needs attention (such as funding for MS research), we will look to the MS Caucus for their support. This bi-partisan body will serve as a forum for members of Congress, their staff, related organizations, and individuals to discuss critical healthcare, disability, research, and other issues affecting people living with MS and other conditions. Once the Senate MS Caucus is formerly announced, you will be able to help recruit your Senators to join.
The House MS Caucus is growing significantly — now 72 members. View the most up-to-date list in the left column of the MS Activist Blog.

Tuesday, March 04, 2008

We are MS Activists

In an email I received this morning!

Dear GRC Members,

I am pleased to forward this message to all of you regarding the recognition our chapter recently received at the National MS Society’s Programs Conference. Due to the tremendous activism and advocacy over the prior year, the Pacific South Coast Chapter has won the Chapter of Excellence in Advocacy Award. Great work everyone and cheers to the year ahead!! I am truly honored to be a part of this team.


Monday, March 03, 2008

From the Orange County Register January 21, 2008

Getting the job done
Volunteer with multiple sclerosis finds a way to help

Tustin resident Frank Austin, a volunteer who has multiple sclerosis, was honored by the National Multiple Sclerosis Society's Pacific South Coast Chapter as its 2007 Activist of the Year.

According to the MS Society, Austin's selection was based on his efforts to assist disabled persons by serving on various committees, as well as his role as leader of a self-help group for men with MS.

MS is a chronic and disabling disease of the central nervous system with no known cure.

Austin worked for office equipment companies for more than 20 years before his diagnosis with MS in 1997. He and wife, Corinne, have been married for 25 years. They have three grown children.

Q:Why do you think you were honored?

A:I was involved in a lot of stuff last year. I do think we did a tremendous job with our advocacy work with OCTA. A year ago, their paratransit service was in horrible shape.

What they've done now is put together a real time system; drivers are now online, they're doing everything in real time. They're keeping track and they know where all their buses are every day.

I think OCTA and their contractor did a tremendous job of getting it together, but I think a part of it was we were standing there and they had to look at us in the face.

Q:What has caused you to become so actively involved?

A: What else am I going to do? (laughs) I have MS. I am on Social Security disability. I haven't worked for five years. Obviously I wanted to do something I care about and I'm a bit of a workaholic and this seemed like an obvious thing to do. It's now my life.

Q:How has MS impacted your life and how do you deal with it?

A:Well it's taken me out of the workforce. I have some problems with the ability to stand. I get fatigued. My mobility is limited to about 200 feet to 200 yards depending on the day. I've been fortunate; my wife is tremendous.

This disease treats everyone different. I see a lot of people who just withdraw and go into their shell and they just kind of wither. Their self-esteem is gone and they just can't stand up to it anymore. I refuse to be that way. I'm going to do things as long as I can and when I can't do it the way I did it before I'll try and find another way to get the job done.

Contact the writer: 949-553-2918 or

Saturday, March 01, 2008

Congressionally Directed Medical Research Program

February 27, 2008

The Honorable John Campbell
House of Representatives
1728 Longworth House Office Building
Washington, DC 20515-0548

Representative Campbell:

Please support a $15 million appropriation to the Congressionally Directed Medical Research Programs in the FY 2009 Defense Appropriations to fund multiple sclerosis research. I ask that you show your support by signing the Dear Colleague letter regarding this issue being circulated by Congressmen Russ Carnahan (D-MO) and Michael Burgess, M.D.(R-TX).

MS is a chronic, unpredictable, 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 is still unknown and there is no cure.
Current medical treatments are not effective for many people and cannot be tolerated by many others.

I am a Vietnam Veteran who exhibited my first MS symptoms within 10 years of my return from Southeast Asia.

Many U.S. veterans have stories and symptoms of multiple sclerosis. Preliminary evidence suggests that Gulf War veterans could have an increased risk of developing MS. A study in the Annals of Neurology, for example, identified 5,345 cases of MS among U.S. veterans that were deemed "service-connected." The number of service-connected cases was a significant increase from previous studies. And an epidemiologic study found an unexpected, two-fold increase in MS between 1993 and 2000 in Kuwait, which suggests a potential environmental trigger for MS.

Dr. Mitch Wallin, Associate Director of Clinical Care at the VA's MS Center of Excellence-East, says that "current evidence points to an environmental trigger initiating the disease in a genetically susceptible host. The association of neurologic disease and GW (Gulf War) service may be related to a variety of potentially hazardous environmental exposures that were present in the war theater."

The DoD has an obligation to fund MS research related to service during the Gulf War. Not only would this research benefit our Gulf War veterans, but would also benefit all those who live with multiple sclerosis and related diseases.

I ask that you support MS research by signing Congressmen Carnahan and Burgess' Dear Colleague letter and joining us in our request for $15 million from the Congressionally Directed Medical Research Programs in the FY 2009 Defense Appropriations. Thank you for helping us move closer to a world free of MS.


Frank Austin