Multiple Sclerosis Movers and Shakers Advocacy Newsletter: Latest Issue

2010-10-19T18:17:00.000-07:00

Below is the latest Advocacy Newsletter form the MS Foundation (msfocus.org)

THE ISSUES

Participate in MS Genetic Studies – People living with MS may hold the key to curing this disease. The UCSF MS Genetics Group (UCSF) is looking for participation of two types of families: single-case and multi-case families.

For more information on how you can help go to: http://neurology.ucsf.edu/msdb/index.html

Survey on Parenting With MS – Being a parent is tough enough! Please take a moment to join in a brief survey on parenting with MS. Your answers and identity are anonymous.

To participate in the survey go to: http://www.surveymonkey.com/s/58CMN7Z

African-American MS Study – Different populations are being studied to learn why some ethnic groups develop MS at higher rates than others. The MS Genetics Group is asking for the donation of a blood sample from African-American individuals with MS and controls without MS.

If you are interested in participating, please contact the Clinical Coordinator
UCSF Department of Neurology Phone: 1(866) MS-GENES or 1(866) 674-3637
Or visit their website: http://neurology.ucsf.edu/msdb/index.html

Participate in Home-based Physical Activity Research – The Oregon State University is investigating the feasibility and potential effectiveness of a motivational home-based physical activity intervention utilizing interactive communication technology in people with MS. There are three phases in this study: a survey, a focus group, and a study of the intervention. People who are 18-65, are diagnosed with MS, and are ambulatory using minimal assistance are invited to participate via prompts below:

Click here for Part One
Click Here for Part Two

For questions and comments contact Ms. Alicia Dixon, 541-737-5927, dixona@onid.orst.edu

Multiple Autoimmune Disease Genetics Consortium (MADGC) – MADGC is a group of genetic researchers who have joined efforts to identify and understand the genes that autoimmune diseases, including MS, have in common. If at least two members of your family are affected with different autoimmune diseases your family may qualify to participate in an important research study.

Learn more at: The Multiple Autoimmune Disease Genetics Consortium

Survey on Birth Factors and Multiple Sclerosis – The University of Oxford’s Bart’s and The London Schools are conducting a brief survey to research if early life events in your ancestry could contribute to the risk of MS.

To participate in the survey go to: https://www.surveymonkey.com/s/VHGZYZ8

Advocating for Your Medicare Benefits – Many people with Multiple Sclerosis find themselves in the Medicare system due to disability. There are many parts to know and understand.

Learn more about self-advocating for your Medicare at The Center for Medicare Advocacy Page.

Support the Part D Off-label Prescription Parity Act – The Part D Off-label Prescription Parity Act (H.R. 5732) was introduced on July 14 and would allow Medicare Part D carriers to cover the "off-label" use of drugs prescribed to people living with chronic diseases, including MS, when its use is supported by peer-reviewed medical literature.

Please go to the link provided, move to the bottom of the page, and fill out the self-guided e-mail submission form asking your U.S. House Representative to sign this bill: http://www.capwiz.com/nmss/issues/alert/?alertid=15602506&type=CO

MS ADVOCACY 101

The Americans with Disabilities Act and You

This year is the Americans with Disabilities Act (ADA) twentieth anniversary. A big portion of the Act deals people being able to safely access buildings. In fact, the ADA has made accessibility into a public building part of American law.

Today any public building, built post 1990, must meet minimum ADA standards: bathrooms must have one accessible stall, a ramp must allow wheelchair access, rails are to be placed in precarious areas, and parking spots reserved with the now-standard blue logo near the entrances.

Should you discover a public location in conflict with the ADA, we ask you to speak up. For example, if there’s no ramp access into a building, which clearly needs it, begin by calling the owner or management firm. Ask who is in charge of maintenance. Explain politely, but firmly, that they are breaking the law. Give them an opportunity to correct the situation.

The only buildings that truly find a loophole in the Act are registered as historic with the county or state. If access can not be accommodated without ruining the integrity of the landmark, they are not breaking the law. In other words, the building does not need to comply, providing doing so would drastically change the structure to the point of its heritage being dismantled.

Thankfully, most official landmarks understand they are a symbol of America and our freedom for all, and have, without issue, been remodeled to abide the ADA laws. Often you’ll find they’ve placed disabled access in a different area than the primary entrance to minimize the impact of the modifications on the site. Visitors use the blue symbol signs to guide themselves to an accessible entrance.

If you feel there could be access, but isn’t – even at a historic site – check with the management and speak up. Ask them why there’s no access. You probably are not the first, and the answer may make you advocate to seek access, or discover they’ve tried. Either way, you’ve stood up for the Act which has helped so many.

All public buildings that do not fall under a historic title, like a strip mall or some other large gathering place for the public, must have ground level access and updated bathrooms – regardless of date of construction. It is the law. Older buildings are in violation if they fail to meet what the ADA calls “reasonable repairs.”

Just remember, your first step (so to speak) when you find an ADA violation is to start with ground level contact: owners or management. If you find them unresponsive, you can escalate to local government. The Mayor’s office is first. You may want to contact your area’s press outlets for a human interest story. And know that if your communications do not yield results, an ADA lawsuit – against the owner, town, city etc., – can be filed.

Usually, a frank conversation with an ADA law-breaker is all one needs to get the doors open! The Act’s slogan is “Everyone will have the right to live, work and participate fully in the American Experience.”

Advocate for your right to have access to in your community or where you find issues! For more action tips or guidance go to: http://www.aapd.com/site/c.pvI1IkNWJqE/b.5607285/k.42E6/Take_Action_Make_Your_Voice_Heard.htm

The ADA covers more than just buildings. You can learn all the Act covers at ada.gov.

ADVOCACY WORKS!

Quilting a Community Together While Raising Big Money for MS
Lynda Leeper, who was diagnosed with MS 25 years ago, has since helped to raise over $30,000 for multiple sclerosis research, and another $2,400 for enrichment scholarship programs.

Her fundraising began humbly with a small quilt show in 2005. Lynda says, “Quilting is one of my passions. I started thinking about doing a show where people could display their work, sell it if they wanted, and have donations for a silent auction. The money from the silent auction would be a 100% donation to MS.”

Lynda gathered several other enthusiasts and organized all the particulars: place, date, length. To get the word out, Lynda put an ad in the Quilt Wyoming newsletter, the local newspaper, and a few nearby counties.

What began as a one woman’s hope to raise MS awareness and research funding grew into a five year annual event the whole community looked forward to. During each show, Lynda had a table covered with information on MS and MS-related brochures. She found local papers were happy to do a community interest story on the show, and help raise awareness on her fight against MS.

In the last year, she has added a book sale to her fundraising efforts. “The County Library has a used book sale each year that is very successful for them, which gave me the idea of adding it to the show. And just before the show the local library asked me if I wanted some of the ones they had left.” She laughs, “So it looked like a huge quantity of books which I think helped it be successful.”

Her friendship with Wyoming native, fellow MS patient, and Olympic Gold Medal Downhill skier Pepi Stiegler led to the book sale funds going towards a Can Do MS Center (formerly The Heuga Center) scholarship. She explained, “I would complain to Pepi about my skiing not being what it use to be. In one of our conversations he was talking about his friend, Jimmie Heuga, who had also been diagnosed with MS and was also an Olympic gold medal skier. The more I learned about the Heuga Center and the life enrichment programs that they offered, I was very impressed! Earmarking the proceeds from the used book sale for a scholarship to the Heuga Center seemed like a good match.”

“The only thing I asked was that someone from Wyoming be given the scholarship. When my contact at the Center called to tell me that the scholarship had been awarded, it was a wonderful feeling! I actually cried.”

Over the last five years Lynda’s quilt show has raised $30,000.00 for the National MS Society. The Book Sale addition has brought in another $2,400.00 for the The Can Do MS Center.

Lynda sums up her experience this way, “The show was my way of doing something. I loved the expression on women's faces when they would see their work displayed and hear all of the positive comments about their work. Each year at the show, I would meet someone that either knew someone with MS or had a relative that was afflicted. It would give me another person to add to my contact list. I try to keep in touch with the people that I have met through MS with either sending a card or just a quick email to see how things are going. On a small scale it was my form of doing advocacy work.”

MS 101

2009-06-22T08:57:00.000-07:00

My fellow Ambassadors and I were given a kind of an informational boot camp in MS. Believe me, just when you think you have heard/read it all...

I never feel the need to not listen. I always learn something; even if it is another view on something I'd learned. The most important thing to know about MS is that its affects are different with each patient. The most common "same" symptom, fatigue, is even different from one to an other. The symptoms you have are based on where you have your troubles in the nervous system. If you are walking now, the diagnosis does not mean you will be in a wheelchair soon. If you have eye issues it does not mean the issue will not remit. Stay positive and work with your professional, and the MS Foundation and MS Society to learn all you can about staying as good as you can. They have pamphlets, chat room, and hundreds of resources for answers.

In this last group conference we talked about the different types of MS, and the many medicines we know have to help slow the progression. There is no cure. But everyone in high standings medically agrees, "Start an MS medicine as soon as you are diagnosed." Some even start patients while awaiting a confirmation (to be on the safe side). These are the Rebifs, Copaxones, Beta Seron and Avonex for example.

Did you know there are four, and a debated fifth, type of Multiple Sclerosis? The most common is Relapsing Remitting. This is when the various symptoms come and go and you can take symptom medicines to assist with many. You must discuss each symptom with your neurologist to determine if it is "normal" of MS related then work out a medical or physical plan to help you.

Then there is Secondary Progressive. Here the symptoms flare up more frequently and can be more severe - but again, there are medicines to help ease the effects.

Third is Primary progressive. This is much harder to function with and thankfully affects only about 10% of MS patients.

The fourth is Progressive Relapsing, a serious version that is low in numbers; 5% of patients.

The debating fifth is called Benign. This is when symptoms related to MS come on and then disappear for years. It is considered a "retrospective diagnosis."

More to come

Becoming an advocate

2009-05-27T10:29:00.000-07:00

Recently I was honored by being chosen as one of The Multiple Sclerosis Foundation (MSF) Ambassadors. We are a group of ten spread out across the US. We will help spread the word about the MSF resources and I will be helping the newly diagnosed find the many resources available to them. The big plan is trying to show MS patients how you can live - even thrive - with an MS diagnosis. My hope is to get the communication started and help others to adapt as comfortably as possible to the new life.

The Multiple Sclerosis Foundation has helped me tremendously. I am so happy to return the favor; or at least try to. As announcements were made about new Ambassadors we were each interviewed by the MSF. Here is mine: http://msf-staff.livejournal.com/8801.html

I am now retired due to MS. I am unable to keep a structured work schedule. I was however able to work on Gone With The Wind extras for Warner Bros. 70th Anni Edition due out at the end of this year. My boss at Leva FilmWorks (the company that produces for many of the WB dvd collections) knows I have MS and allocates the time needed for my issues. I in turn, strive to be sure to get exactly what he's asked for from interviewees. So far so good. The infusion of funds helped with the wickedly high medical costs. Plus the work helped my self esteem. The gig also reminded me I made the right decision to leave "the biz." I could not maintain that schedule. As it was I spent a week recouping post shoot!

As I hung up with the MSF on the first Ambassador meet & greet call, I smiled at what this next chapter will bring as far as life memories. Sure I can't do this and that. But I can do. And I chose to.

I have MS, but I am still me and still thriving - if not striving.

Joining in the MSF

Multiple Sclerosis Movers and Shakers Advocacy Newsletter: Latest Issue

MS 101

Becoming an advocate