spring 2013 Utah-southern idaho chapter
MS Connection Newsletter
MS Awareness Week – March 11-17
Every Connection Counts No matter where you live, what you do and who you are, there are lots of ways to participate in MS Awareness Week. The most powerful way is to share your story and express your own unique experiences on how it impacts you and your family or why you decided to get involved as a volunteer, a supporter, an advocate or a participant at Bike MS, Walk MS or another Society event. “As I have shared my story, almost everyone has said that they know someone with MS and never really knew what it was and were afraid to ask,” said Kent Packer. “By sharing information, it gives you and others a better understanding of MS and takes away fears.” Each day during MS Awareness Week, Kent emails people in his address book a basic fact about the disease and parts of his story such as
how he is affected, what he does to cope better with MS, why he’s involved with the Society, and also how he and his family have rallied against the disease. “I got the idea while riding in Bike MS a few years ago. I was reading all the signs that have facts about MS and thought I already know this but I bet not everyone else does.” He’s right! The more we all share what MS means to us, the more we help one another learn, connect and get involved. While MS destroys connections in the brain and with the rest of the body, it is our connections with one another that make us stronger. Checkout our website for more ideas and please share with us (see page 2 for how to connect) what you have planned. If we all do something during the same week, we will shine a brighter light on multiple sclerosis. Get involved in MS Awareness Week!
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MS connection: spring 2013
national multiple sclerosis society Utah-Southern Idaho Chapter 1-800-344-4867 utah.idaho@nmss.org Chapter Headquarters 1440 Foothill Drive Suite 200 Salt Lake City, UT 84108 Boise Office 4696 W. Overland Road Suite 222 Boise, ID 83704
Connect With Us Online: Like us: facebook.com/ MSutahIdaho Follow us: twitter.com/ cureMSutahIdaho Watch us: youtube.com/ cureMSutahIdaho Join us: MSConnection.org Š2013 National Multiple Sclerosis Society Utah-Southern Idaho Chapter
June 1, 2013
MS Wellness Expo What does being healthy mean to you? Join us for our MS Wellness Expo in Salt Lake City, a day of exploration of all the dimensions of health and well-being. Enjoy a variety of vendors, services and workshops. Learn about MS, treatment options, and support services. Share real-life experiences and advice with other people affected by MS. Family members and friends of all ages are welcome. Free to attend. Advance registration required. Sign up today! Call 800-344-4867 or online at MSidaho.org or MSutah.org
Information provided by the Society is based upon professional advice, experience and expert opinion. Information provided in response to questions does not constitute therapeutic recommendations or prescriptions. The National MS Society recommends that all questions and information be discussed with a personal physician. The National MS Society does not endorse products, services or manufacturers. Such names appear here solely because they are considered valuable information. The National MS Society assumes no liability for the use of contents of any product or service mentioned.
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msidaho.org | msutah.org 1-800-344-4867
PRESIDENT’S MESSAGE
Stepping Up MS Research
Be a NOW Champion Learn more about the MS NOW campaign and be part of the MS revolution.
How amazing would it be if we could double the funds being put into finding a cure for multiple sclerosis! Perhaps then we could speed the progress in our battle against this crazy disease. Perhaps then we could stop MS from progressing, restore function so many have lost, and end MS forever. That is exactly what the National MS Society is planning to do. To double the funds we invest in research by 2015 – to fund more than $60 million a year! The Society’s No Opportunity Wasted “NOW” campaign is calling on our local communities to help. I am proud that our chapter has embraced this challenge and has committed to call on our friends, our neighbors, our comrades to raise $2.7 million in our own community to support this bold goal. As we work to raise more dollars for research, our resources and support to people facing the everyday challenges of MS will not go away. We will continue to work with those impacted by MS and provide innovative programs and services. But, we must step up our game to do more in finding a cure for multiple sclerosis.
Visit nationalMSsociety.org /research
STOPPING THE DISEASE
RESTORING WHAT’S BEEN LOST
Please join us and help encourage others to give to the NOW campaign!
Annette Royle-Mitchell Chapter President
ENDING MS FOREVER
04 Ray, diagnosed in 2003
MS connection: spring 2013
I then pointed out two things to remember about accommodations:
01 You must be able to perform the essential
money matters
What are Job Accommodations and How Do I Get One?
By Kris Graham
At the Society’s Information Resource Center, where people with multiple sclerosis and their families can call an MS Navigator® at 1-800-3444867 for help on a range of topics, we recently received a question about how to obtain accommodations when multiple sclerosis starts to get in the way of doing your job. So here’s what I told our caller. First, I explained what accommodations are. They can be things like new equipment or changes to existing equipment. Another type of accommodation may be a change to your work routine, such as hours worked. (Read a few real-world examples of accommodations that have worked for people with MS at askjan.org/soar/MS/MSex.html).
functions of your job. The ADA (Americans with Disabilities Act) does not require employers to reduce essential job functions, but you can ask to change how you perform an essential job function. Usually employers decide which job functions are essential.
02 Your employer does not have to provide
you with your first choice in accommodations. The employer has to provide an accommodation that is reasonable and effective, if available — so be ready to discuss alternatives.
Next, we discussed whether or not the ADA applied to the caller’s situation. People can request reasonable accommodations under the ADA if: n
They work for an ADA-covered employer;
n
They are “qualified” to do the job; AND
n
They are a person with a disability as defined by the ADA.
ADA-covered employers include private employers with 15 or more employees, all state and local governments, employment agencies and labor unions. If you’re not sure whether your employer is covered by the ADA, contact your regional ADA Center (look up your region at adata.org) or visit JAN (the Job Accommodation Network) at askjan.org. Both organizations are free and confidential resources. If your employer is not covered by the ADA, contact an MS
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Navigator® at 1-800-344-4867 for assistance in exploring other possible legislation that may protect you. “Qualified” to do the job means that someone has the “skills, experience, education, or other requirements” of the position, and “can perform the essential functions of the position with or without reasonable accommodation.” (For more information, download the Disability Law Handbook — Employment and the ADA for free at swdbtac.org/html/publications/dlh/ employment.html). The ADA’s definition of a “person with a disability” now includes most people with MS, thanks to the passage of the ADA Amendments Act and updated Equal Employment Opportunity Commission regulations. Although people with MS do not necessarily have to disclose their diagnosis, they must provide enough information for the employer to understand that they are a person with a disability. For more about workplace disclosure and a helpful worksheet, visit nationalMSsociety.org/disclosure. My next advice to the caller was to be prepared! Before you request accommodations, make sure you can answer all of the following questions: n
How is MS affecting your job, potential job, or application process?
n
Why are you requesting accommodations?
n
What information will you need to provide to your employer (or potential employer) to clarify the impairment affecting your work and the accommodation that will remedy the situation?
n
What accommodations or changes to your work will be effective?
n
When should you speak with your employer (or potential employer)?
n
Who should you involve in the conversation?
n
How should you follow up on your request?
n
What are your rights if things go wrong?
Finally, I told the caller that if she had additional questions, an MS Navigator would be standing ready for her call. Kris Graham is the employment manager for the National MS Society.
These resources can provide more help and information The Win-Win Approach to Reasonable Accommodations, available at national MSsociety.org/accommodations. ADA — Your Employment Rights as an Individual With a Disability, available at the U.S. Equal Employment Opportunity Commission’s website at eeoc.gov/facts/ada18.html. Employees’ Practical Guide to Negotiating and Requesting Reasonable Accommodations under the Americans with Disabilities Act, available at askjan.org/EeGuide. JAN’s Searchable Online Accommodation Resource (SOAR) at askjan.org/soar/index.htm.
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MS connection: spring 2013
research
Progress on ms Therapies by Megan Weigel, CNP, ARNP-C, MSCN
In 1993, Betaseron was released to market as the first disease-modifying therapy for multiple sclerosis. With the approval of oral teriflunomide (brand name Aubagio®) by the FDA in October 2012, we now have nine disease-modifying therapies to treat relapsing forms of MS—and more on the horizon. The MS Emerging Therapies Collaborative, which includes the Society, provides downloadable information sheets at ms-coalition.org/emergingtherapies to facilitate communication between doctors and people with MS about newly approved treatments. Research on potential treatments for progressive forms of MS is also underway and the International Progressive MS Collaborative, of which the Society is a member, plans to do all it can to speed the development of those treatments. Here are the therapies to keep an eye on as we move forward into 2013. BG-12 is an oral fumarate that has been used in Europe for over a decade to treat psoriasis. Although its exact mechanism of action is not known, it is thought to inhibit immune cells active in MS and may even be protective against damage to the brain and spinal cord.
Two large phase III studies (the DEFINE trial and the CONFIRM trial, respectively) found that BG-12 significantly reduced relapses and disease activity as detected by MRI. The most common side effects were flushing of the skin and gastrointestinal upset. In 2012, Biogen Idec applied to the FDA for approval of BG12 to treat relapsing MS, and the review process is now underway, with the FDA’s decision expected within the year. Alemtuzumab, a monoclonal antibody that depletes circulating immune (T and B) cells thought to be responsible for MS attacks, would be administered by IV infusion for five days and then for three days one year later. Genzyme applied to the FDA for approval of alemtuzumab to treat relapsing MS, based on positive results from several clinical trials, including one that showed a 55% decrease in relapses compared to interferon beta 1a (Rebif ); however, the FDA asked the company to resubmit its application, so a timeline has not yet been established. While this therapy
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is powerful against MS, there is concern regarding adverse events, such as immune thrombocytopenic purpura (ITP, a bleeding disorder), and autoimmune thyroid disorders. Laquinimod is a once-daily oral immune modulator that proved in phase III studies to statistically significantly decrease relapse rates, though not as robustly as investigators had hoped. This drug is about to be tested in another phase III study in 1,800 people with relapsing-remitting MS. Daclizumab and ocrelizumab are two other monoclonal antibodies currently under study, with favorable results thus far. A highly concentrated liquid formulation of daclizumab is under study in relapsingremitting MS. Experimental ocrelizumab, given intravenously, significantly reduced disease activity on MRI scans in a study of 218 people with relapsing-remitting MS. One person died due to brain edema; however, the relation of this death to the medication is unclear. Additional research, now going on in primary-progressive MS and relapsingremitting MS, is needed to further determine ocrelizumab’s safety and benefits. Clinical trials of treatments for progressive forms of MS are currently underway: these include natalizumab (Tysabri), fingolimod (Gilenya) and ocrelizumab.
Making choices When we consider treatment now, in particular the possibility of switching therapies, we weigh the safety and efficacy of our older, injectable disease-modifying
agents against the seeming convenience and perhaps superior efficacy of newer agents. The sequencing of therapies is a new consideration, as well, as the effects of medications like natalizumab and fingolimod on the immune system may be prolonged. Questions about new therapies may mean longer or more frequent appointments with neurologists to discuss their risk-benefit ratios. Additionally, people with MS may choose to see an MS specialist, or be referred to one by a general neurologist, for treatment recommendations. However, the most encouraging part, in addition to the fact that treatments for MS may be getting more effective, of course, is that the research pipeline is full. Thanks to those who are committed to research funding, science is able to continue searching for the cure, and on that search, discover medications that will keep this disease as quiet as possible. To follow progress on potential MS therapies, sign up for MS eNEWS at nationalMSsociety.org/signup, or visit nationalMSsociety.org/research. Megan Weigel is a Doctor of Nursing Practice and MS Certified Nurse.
FINANCIAL PLANNING
Sometimes, everyone needs a little help - especially people juggling the many financial challenges of living with MS. We are here to help! Free financial planning is available please call 1-800344-4867 today.
08 news
Neck of the Woods A collection of shining moments from throughout our chapter. Please share your good news with Juliann.Fritz@nmss.org.
Caldwell
Sophomore Zoe Maughan and the students of Caldwell High School rock! The school hosted a Cause Week with classes competing against one another to raise funds for selected charities, including the Society. The week included a Rock-a-Thon with students rocking for 12 straight hours in rocking chairs. They presented the Chapter with $600!
Cedar City
The Chapter hosted a Relationship Matters workshop that helped couples learn techniques to better manage MS and the impact it has on their relationship. Check out our Chapter’s website for additional resources beneficial for the entire family.
Salt Lake City
Ann Hoffman, captain of the Bike MS team Bad Ass Coffee, was awarded the prestigious top fundraising trophy at the annual Team Captain Kick Off. Her team of 97 riders raised $117,057! They are the first team to accomplish such a fundraising feat since 2006. Renee Burkley doesn’t think MS is a laughing matter, but she’s using comedy to spread awareness. She shared with a crowd at Wise Guys comedy club what her life is like with MS. Check out her skit–tinyurl.com/d7b3ytt.
MS connection: spring 2013
Sandy
Jim Carpenter, long time Bike MS rider with Team Hilti, was awarded Hilti’s Legacy Cup by his company and raised $12,000, as well as spreading awareness about MS at their national sales conference.
Nationwide
Sam’s Clubs across the nation, including nine in our chapter, were busy hosting creative fundraising events (Jan.-Feb.) to benefit the National MS Society. Over the last two years, they raised nearly $3 million overall. We can’t wait to hear what they accomplish this year! Please thank them on your next visit.
Love Your State, Save the Date!
Our chapter will participate in Love Utah Give Utah on March 22 and Idaho Gives on May 2. Help us spread the word in your community about these statewide days of giving and also inspire others by offering a matching gift. Contact us today at GetInvolved@nmss. org to join the efforts. The more people engaged, the more successful these campaigns are – give where you live!
NAMASTE!
Gentle MS Yoga classes are being offered through the Chapter. If you would like more information or would like to see yoga classes offered in your community, please contact us!
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SUPPORTING THE MISSION
Team Captains Rally for 2013 Walk MS and Bike MS season are upon us! Many team captains – rookie and veteran – came together in Boise and Salt Lake City for the January Team Captain Kick Off. It was a high energy morning as team captains networked, shared ideas and learned from each other to gather additional inspiration. Newly diagnosed Boise team captain Maryanne Beede shared how she raised $2,200 in just over a month by simply sharing her story. Maryanne started by updating her Participant Page and sending it to everyone in her email and her mom’s, too. One of her motivations to fundraise is that, “I am so lucky that I have the Veterans Administration to take care of my MS for the rest of my life. What about everyone else? That is why I decided to start raising money. People can’t afford insurance and the cost of the meds alone for MS can be thousands of dollars a month.” In Salt Lake City, Troy Meyer of Team Fighter, 2012 Walk MS Rookie Team of the Year, talked
April 20, 2013 Julia Davis Park walkMSidaho.org
Mentoring Success! Bobbi Jo Trujillo with Troy and Lexi Meyer. about the value of being coached by a mentor. Diagnosed last spring, Troy didn’t know where to begin as a team captain, but befriended longtime team captain Bobbi Jo Trujillo of Team Help Momma. She coached Troy in how to use the website, how to host fundraising events and even the best way to order team t-shirts. His strategy worked. With an initial goal to raise just $500, his team surpassed it with $7,400! If you are considering starting a team this year or just need some extra guidance, the Chapter is happy to pair you up with a mentor and provide one-on-one coaching or help you host a Kick Off event of your own. It is never too late or too early to start a team!
April 27, 2013 Gateway Mall walkMSutah.org
June 29-30, 2013 Logan, Utah bikeMSutah.org
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MS connection: spring 2013
Advocacy
Victory in Medicare Settlement A settlement to end Medicare’s so-called “Improvement Standard,” which denied coverage of certain treatment services to people with multiple sclerosis and other diseases, was officially approved January 24 by Chief Judge Christina Reiss of the U.S. District Court in Vermont. The settlement to end the standard was reached in a nationwide lawsuit in which the National MS Society was a plaintiff. The Society had joined other organizations including the Parkinson’s Action Network, the Alzheimer’s Association, United Cerebral Palsy and Paralyzed Veterans of America in a class-action suit to challenge the Centers for Medicare and Medicaid Services (CMS) over the standard. The standard had denied Medicare coverage for services such as skilled nursing facilities, home health and outpatient therapy benefits like physical or occupational therapy to Medicare beneficiaries living with MS if they did not show improvement. However, these oftenexpensive services can be critical to prevent decline or maximize independence. The settlement’s approval effectively means that any denial citing the “improvement standard”
MS activists make change happen. can be appealed moving forward and even dating back to January 18, 2011 (the date the case was filed). CMS is now tasked with revising its Medicare Benefit Policy Manual and other policies, guidelines and instructions to ensure that Medicare coverage is available for skilled services in home health, nursing home and outpatient settings. CMS must also develop and implement a nationwide education campaign to ensure beneficiaries with chronic conditions are not denied coverage for critical services. For more information, visit MSActivist.org.
join the advocacy ranks
Sign up for the Society’s Advocacy eNews. Visit nationalMSsociety.org/advocacy. And, ask the Chapter how else you can help. Email GetInvolved@nmss.org.
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Volunteer spotlight
MS Advocates Make a Difference
given a chance to speak with our state and national congressional delegations to educate them on what they can do to support the cause. Advocating boils down to communication, just telling someone your story and how MS has changed your life elicits a natural human desire to help. Anyone can tell their story and join the movement to make a difference for us now and in the future.” Cheryl Bloom feels the same way. Diagnosed in 2000, she has been an active advocate for a decade and has seen change happen because she and other MS advocates got involved. When asked what advice she might give others who want to join the advocacy ranks but don’t know where to start she says, “Don’t be intimidated by the process. It’s not difficult and it’s actually a lot of fun. Legislators are approachable and love to talk about what they’re doing.”
Idaho’s Cheryl Bloom and Utah’s Kelly King. Kelly King wanted to do something positive about his diagnosis in 2010. For him, it was volunteering as an MS advocate and learning how change can happen through public policy efforts. “I’ve enjoyed being an MS advocate because I now realize that I can make a difference and help educate our leaders about this disease that affects so many of us. There’s a feeling of empowerment that I’ve felt each time I’ve been
“Advocacy starts at home and in our local communities,” shared Programs Director Judy Bishop, who heads up advocacy efforts for the Chapter. “We need more passionate volunteers helping to educate officials about MS but also pointing out what is needed to help people with MS, whether it’s better accessibility or changes in federal and state policies.”
COMPUTER BASICS
Not everyone today knows the basics to understanding computers. The best way to learn is with a little practice. Contact Chelsey.Banks@nmss.org or 1-800-3444867 (option 2) for more information.
1440 S. Foothill Drive, Suite 200, Salt Lake City, Utah 84108-2354
Ongoing Self Help, Support & Social Groups Idaho
Boise Idaho Falls Nampa AM Nampa PM Twin Falls
utah
Centerville Murray Ogden AM Ogden PM Price St. George West Jordan
2nd Thursday 1 p.m. 2nd Monday 1 p.m. 2nd Saturday 10:30 a.m. 2nd Tuesday 7 p.m. 1st Thursday 6 p.m. 2nd Thursday 7 p.m. 2nd & 4th Saturday 10 a.m. 1st Wednesday 11 a.m. 3rd Tuesday 6 p.m. 1st Tuesday 6:30 p.m. 4th Saturday 10 a.m. 2nd Wednesday 7 p.m.
calendar
Educational Events & More More information, as well as additional Chapter events, are available online (MSidaho. org or MSutah.org) or by calling 800-3444867. Learn more and make plans to join us!
MARCH 11-17 14 20 22
APRIL
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MS Awareness Week MS 101 Education, Brigham City Understanding & Managing MS Ed Series: How to Handle Stress, Boise Love Utah Give Utah tinyurl.com/aczc43x
APRIL (continued)
17 20 27
MAY
2 15 29 27
JUNE Important Decisions about Employment & Benefits with Living with MS, West Region Teleconference
Understanding & Managing MS Ed Series: Mobility – Auto and Aids, Boise Walk MS Boise Walk MS Salt Lake City Idaho Gives Understanding & Managing MS Ed Series: E xercise and Yoga, Boise World MS Day Memorial Day – Society Offices Closed
1 MS Wellness Expo, Salt Lake City 6 Sleep Management, West Region Teleconference