MSConnection - September
Quarterly newsletter of the Utah-Southern Idaho Chapter of the National MS Society.
UTAH - SOUTHERN IDAHO CHAPTER MOVING TOWARD A WORLD FREE OF MS | SEPTEMBER • 2012 New Digs for the Chapter’s Offices We’ve moved! Both the Boise and Salt Lake City offices have relocated this year. Please make sure to update your mailing records and stop by to see the new digs. Our phone and fax numbers remain same. missed! Two electric signs on the exterior of the building are also helping to bring greater awareness to MS and the Society, as an estimated 40,000 cars travel pass the building nearly every day. “We are excited with our two new locations,” said Chapter President Annette Royle-Mitchell. “They’re both more suitable to our needs and in more prominent business areas. Plus, the new spaces reduce our overhead costs. We can use these savings to better help people impacted by MS and support important research.” An Open House is scheduled for October 4 from 3-7 p.m. at the new Foothill Drive location. Come join us! The Salt Lake City office moved in August to 1440 Foothill Drive, Suite 200, Salt Lake City, Utah 84108. This is a more modern and visible location. It can’t be Salt Lake City, Utah Office In March, the Boise office moved to 4696 West Overland Road Suite 222, Boise, Idaho 83705. This location is off a major thoroughfare in a more welcoming complex with other businesses and nonprofits. While an open house was held in the spring, we encourage you to stop in and meet our newest staff member, Megan Nettleton. Boise, Idaho Office INSIDE THIS ISSUE BIKE MS 2012 Page 2 ELECTION AHEAD Page 4 Page 10 GIVING CARE VOLUNTEER Spotlight PAGE 11 Supporting the Mission Bike MS 2012 was a Success! Whether you rode at Harmons Best Dam Bike Ride in Utah or Road Sweat & Gears in Idaho, every mile pedaled helped move us closer to a world free of MS. Both events combined raised more than $1.6 million, welcomed close to 3,000 cyclists and had approximately 350 volunteers lending a hand. Thank you to all who rode, volunteered, donated and cheered everyone on this summer. Bike MS truly is an event that isn’t just measured in miles. The Bike MS weekends were inspirational to those that rode great distances and to those who shared how MS has impacted their lives and led them to get involved. A first-time participant and a top fundraiser, Rex Parker, not only biked in honor of his late brother Rick, but also rode his brother’s 1987 Schwinn Super Sport 12-speed. He was easily spotted at the Idaho ride on the pink steel frame bicycle smiling. You don’t have to wear a cape to be a super hero. “Riding that bike this summer has felt like Rick has given me one final gift,” Rex shared at Bike MS. “I feel like I got to spend one more summer with him, and it has been very special.” Joni Spidle and family plan their summer vacation around volunteering for Bike MS. By giving their time and energy, they contribute to moving the Society’s mission forward. “I remember the first time a rider thanked me for volunteering. I thought ‘Are you kidding?’ I cannot thank the riders enough for all that they do to raise money that goes back to the MS Society to find a cure, to sponsor kids for scholarships and for all the programs they have,” Joni said while sharing her story at Utah’s ride. Rex Parker riding his late brother’s bike. The Spidle family volunteering at the lunch stop. Frank Rosekelly riding in Bike MS for his 26th year. 800 -344-4867 President’s Message PuBlication oF the national multiPle scleRosis society utah-southeRn iDaho chaPteR Studies show that early and ongoing treatment with an FDA-approved therapy can reduce future disease activity and improve quality of life for many people with multiple sclerosis. Talk to your health care professional or contact the National MS Society at nationalMSsociety.org or 800-344-4867 to learn about ways to help manage multiple sclerosis and about current research that may one day reveal a cure. 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. 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 is dedicated to creating a world free of MS. © 2012 National Multiple Sclerosis Society, Utah-Southern Idaho Chapter National MS Society 1440 Foothill Drive, Suite 200 Salt Lake City, Utah 84108 Boise Office 4696 W. Overland Rd., Suite 222 Boise, ID 83704 Follow us: facebook.com/MSutahIdaho twitter.com/cureMSutahIdaho A Time of Change We are again in a season of change – and I’m not just talking about the leaves taking on their beautiful colors of red, yellow and orange (my favorite of all). As you read on our cover, the Society offices have been on the move. We are excited to be settling into new locations in both Salt Lake City and Boise which have helped us reduce overhead and provide better accessibility for those we serve. Please stop by to see us! We hope you’ll mark your calendars for our Annual Meeting on January 30 where we’ll celebrate the great efforts made by volunteers, fundraisers, advocates and Society staff this year. Things like: raising over $1.6 million on our Bike MS campaign, expansion of our volunteer program to include MS Mission Ambassadors in communities throughout our chapter, and of course, the thousands of people we’ve served in 2012 who work every day to tackle MS in their daily lives. As we prepare to wrap up 2012, we’ll also be honoring the great leadership of our Board Chair Bob Harmon whose two-year term will expire in November. A committed MS champion, he provided leadership, integrity, excellence and passionate teamwork throughout his term (all of the core values of the Society). We’ll also be looking ahead to 2013. In January, we will join forces and co-host with our sister chapters in the West Region the Rock ‘n’ Roll Marathon in Phoenix – all for MS! Last year, the amazing ladies from CBH Homes participated in this fun event (see page 7). Not only do they run for MS, but they are the presenting sponsor for Walk MS Idaho and have a team at Bike MS too! In this season of change, we also celebrate our season of thanks. We thank you all for the support, the commitment, and of course the steps you’ve given to take us closer to an MS cure. Annette Royle-Mitchell Chapter President TOLL FREE NUMBER 800 344 4867 | 3 Living with MS Giving Care to the caregivers • Take care of your body with proper nutrition, exercise and sleep. • Do something — call a friend, write a letter, read — that gives you a daily break from the caregiving role. • Stay connected with community — don’t become isolated. • Laugh. Watch funny movies or TV programs Carepartners Connect There is a wealth of ways for carepartners to connect All of us give care throughout our lives, whether it is online. Here are a few of them. Those caring for through holding a hand or helping with daily needs someone with MS can create their own website or visit from transportation to bathing. We give care when we another’s at CaringBridge.org. Here, carepartners can listen to another’s sadness and when we fix a meal. We keep an online journal and photo gallery, ask for help give care when we send a card or manage medication. with tasks, and post updates for friends and family who in turn can post messages of support. Giving care to a loved one with MS can be very rewarding and at the same time unbelievably Today’s Caregiver at CareGiver.com includes a map, challenging. In some ways being a caregiver is like clickable by state, of area support groups, and a special using a battery-powered drill. At first the drill is fully section where caregivers can post their tips for others. It charged and the task at hand seems to be manageable. also offers articles and information on everything from As the charge dies down, the task becomes more nutrition tips to long-distance care. difficult until the drill just can’t continue. The only way to go on is to recharge the drill. If the caregiver The Well Spouse Association at WellSpouse.org is a does not recharge over time, even the smallest task nonprofit membership organization that offers peerbecomes overwhelming. to-peer support and educates healthcare professionals and the general public about the unique challenges that Some ways to recharge are to: “well” spouses face every day. • Ask for help. Even simple things such as getting a gallon of milk for you or providing respite care so The National Family Caregivers Association at you can take a walk around the block can make a TheFamilyCaregiver.org provides an online forum for big difference. caregivers to post questions or talk to others in similar situations. • Join a support group or an Internet chat room set up for carepartners. (See ‘Carepartners Connect’ The Society’s online community at MSconnection.org section next for suggestions). offers a secure place for carepartners to connect. Members can create a personal profile to share Continued on Page 5 4 | cureMSutah.org - cureMSidaho.org Living with MS Continued from page 4 posts, updates, blogs, photos, videos and links, and search for other members by demographics, shared interests and more. The Society also offers a page for carepartners at nationalMSsociety.org/carepartners with information and resources on accessible housing, hiring home help and more. Carepartners can also participate in the Societyâ€™s Online Peer Connections program, nationalMSsociety.org/ onlinepeerconnections. Here they select a peer support volunteer from an online database and arrange to speak one-on-one via email or telephone on an agreed-upon topic. All conversations are confidential. CELEBRATECAREGIVERS November is National Caregiver Awareness Month According to the National Family Caregivers Association, there are more than 65 million family caregivers in this country fulfilling a vital role. November is a special time to raise awareness of family care issues, increase support and recognition of caregivers and to celebrate all that they do. Make sure to celebrate your carepartner. You can share a laugh, recall a special memory, send a card or leave a note, encourage a relaxation break some exercise, treat them to dinner or look for other special ways to celebrate them. Surprise your caregiver! The Chapter has free movie tickets courtesy of Megaplex and other theatres. Supply is limited and only two tickets per household. They are available on a first-come, first-serve basis starting November 1, 2012. Please contact Clare Wright at 800-344-4867 (option 1) or Clare.Wright@nmss.org for more information. PAID ADVERTISMENT â€“ Not a NATIONAL MS SOCIETY PROGRAM TOLL FREE NUMBER 800 344 4867 | 5 Research Connecting the Dots: Vitamin D and MS by Dr. Linda Buchwald Exciting new research is beginning to identify both genetic and environmental factors involving vitamin D that could increase one’s risk for developing MS and could influence disease progression. Research is also targeting vitamin D as a potential therapy, with clinical trials being planned or already underway to determine whether it can prevent or treat MS. gene plays an important role in converting vitamin D to a biologically active form. The researchers then looked for the same rare gene variant in more than 3,000 families of unaffected parents with a child with MS. They found 35 parents who carried one copy of this variant along with one normal copy. In every one of these 35 cases, the child with MS had inherited the mutated version of the gene. The Latitude Effect The Road Forward There’s a long-standing observation that population rates of MS increase the farther away one is from the equator and from the sun, exposure to which is our major source of vitamin D. Could the two be connected? Researchers have been exploring that very question. Studies of who gets MS have confirmed that higher levels of sun exposure and higher blood levels of vitamin D were both associated with decreased risk of a first demyelinating event— often the first indicator of developing MS. In addition, there is evidence that high levels of vitamin D in utero and during adolescence and adulthood also have a positive effect on reducing the risk of developing MS. Research now underway will determine if vitamin D may have preventative as well as disease-modifying effects. In EAE, the animal model of MS, vitamin D supplementation prevents and slows the progression of the disease, while vitamin D deficiency worsens the disease. We also know that high vitamin D levels in people with MS have been associated with decreased risk of exacerbations and less severe disability. Other research suggests that vitamin D may have an effect on the inflammatory processes that occur during MS flares. In a small safety study at St. Michael’s hospital in Toronto, researchers found that immune T cells involved in MS attacks were suppressed in people who had higher blood levels of vitamin D. Genes, Vitamin D and MS Studies done in families where multiple individuals have MS have resulted in new information that potentially links genetic factors related to vitamin D activation Last year (Dec. 2011), Canadian and British researchers published the results of a study that set out to look for rare genetic changes that could explain strong clusters of MS in some families. They studied DNA in 43 individuals selected from families with four or more members with MS. The team compared the DNA changes they found against existing databases, and identified a change in the gene CYP27B1 as being of interest. The CYP27B1 6 | To what extent vitamin D can influence the course of MS once someone’s been diagnosed is still unclear; however, research is being planned to clearly define the role of vitamin D in the prevention, progression and treatment of MS. For instance, researchers at Johns Hopkins University are leading a multicenter controlled clinical trial funded by the Society to determine whether high-dose vitamin D added to standard therapy with Copaxone further reduces disease activity in people with MS. (To learn more about this trial, which is still recruiting participants, visit ClinicalTrials.gov/ct2/ show/NCT01490502). What is clear is that vitamin D deficiency is extremely common in many parts of the country. The optimal approaches for vitamin D supplementation in the general population and in those with MS have not been established, yet it is suggested that everyone take a minimum daily amount of vitamin D supplement. Make sure to ask your healthcare providers what they recommend for you. Due to the inherited risk of MS and the possible preventative effect of vitamin D supplementation, also discuss the possible implications cureMSutah.org - cureMSidaho.org Continued on Page 7 RESEARCH Continued from page 6 of vitamin D deficiency and supplementation for your children. About the Author – This article is written by Dr. Linda Buchwald she is chief of Neurology at Mount Auburn Hospital in Cambridge, Mass., and the medical director of the Mount Auburn Hospital Multiple Sclerosis Care Center. She is a trustee of the Society’s Greater New England Chapter and Clinical Advisory Committee member. This article originally appeared in the Greater New England Chapter’s Spring 2012 MSConnection. SAVE THE DATE The 2012 Annual Meeting, which will include the latest research updates, is January 30, 2013. It will take place the same day at multiple locations including Salt Lake City, Cedar City and Boise. Please check our website later this fall for more information. RESEARCHNEWS Learn more about MS research. Visit nationalMSsociety.org/research for the latest news. TOLL FREE NUMBER 800 344 4867 | 7 Supporting the Mission Elite Feet Fundraiser Shares the Secrets to Her Success Ruth Barrow has created a great Walk MS legacy. She has been part of the Walk MS movement for 18 years and has earned Elite Feet status, raising more than $1,000 each year, for numerous years for the Southern Utah Walk MS event. She is the driving force behind her team, Sunshines Pals, and is motivated by the desire to stomp out MS. “I don’t want anyone else to experience what people living with MS have to deal with each day,” said Ruth. What’s the secret to her fundraising success? “Ask people to give what’s in their hearts,” she says. “If somebody can’t afford to donate, ask them to walk to show their support.” Volunteering also is a good way to give. “I do all of my fundraising though the Internet via email and Facebook,” she added. Ruth also enlists the help of friends and neighbors to put up posters, collect change, and organize fundraisers. Ruth’s favorite fundraisers are virtual events. Over the years, they have included a “bake-less” bake sale, “waterless” car wash, and an “item free” yard sale. No baked goods are consumed, no cars are washed, and no junk items are taken home. Plus, people are able to donate without even leaving the house. One of Ruth’s friends delights in sending funny, unique emails for these fundraisers and often includes lists of funny “benefits” for donating. Ruth enjoys the frivolity and believes that’s why the fundraising has been successful. “Boring emails get deleted,” she adds. She also enjoys sharing her story and getting more people involved in the cause. Team Sunshine Pals also is a wonderful support group since she can’t do it all herself. Her greatest reward is attending Walk MS and seeing all the people there. “I feel really good about seeing them because I know they care,” she says. “When they take some time out of their Saturday to walk and talk to us that means they really care!” 8 | Stuart Jones presents Ruth Barrow with Cedar City’s proclamation for “Ruth Barrow Day 2011” in honor of all she’s done for Walk MS. Walk MS FundraisingDeadlines Fundraising tallies from the September Walk MS events were not available at press time, but participants are still fundraising to meet their goals. Support them today! Step by step, dollar by dollar, we’ll create a world free of MS! November 1 – September events November 29 – October event cureMSutah.org - cureMSidaho.org News Your Neck of the Woods What good things are happening in your area? We want to know about it. Please share your good news with Juliann.Fritz@nmss.org. Boise - The Treasure Valley Battle Against MS hosted their second annual gala fundraiser to support the Society on August 2. Featuring KTVB’s weather anchor Larry Gebert and a presentation from KBOI’s Sports Director Chris Nettleton, the event raised $8,000 to support the Society! Welcome Jeanne Anderson, the Chapter’s volunteer Peer Support Leader. She is an experienced Social Worker and brings her expertise to help those living with MS with one-on-one support. Cedar City - There is a new Aquatic Center with a wave pool and non-resistant water flow that is beneficial to people with MS. Learn more about the Center by calling 435-865-9223. Need help with the membership? The Chapter offers Self Improvement Grants. Contact us to see if you qualify. Idaho Falls - Macy’s department store picked the Society for its annual Shop for a Cause in August. Thank you Susan Miller for organizing and hosting an info table. Meridian - Golfers took their best swing against MS at the 2nd Annual Spearmint Rhino Club’s MS Charity Golf Tournament on September 9 at Lakeview Golf Club. Proceeds benefit the Chapter. Thank you! Nampa - A new daytime support group started and meets on the second Saturday of each month at 10:30 a.m. at the Shilo Inn. Each meeting will include an educational component. This is in addition to the evening group that meets on the second Tuesday of each month at 7 p.m. at Nampa First Church. Salt Lake City - Society-funded clinical fellow Dr. Gael Yonnet spent an evening sharing knowledge gained over the past year with some of the Chapter’s top donors and supporters. The fellowship program aims to train and retain the next generation of MS clinicians. We wish Dr. Yonnet the best as he pursues his career at an MS clinic in Waterloo, Iowa. Utah-wide - The fourth annual Stand to Cure MS took place at nearly two dozen Harmons and Associated Foods grocery stores throughout the state on September 8. Volunteers manned information tables, shared their MS story and served ice cream floats to shoppers. MOVEMENTAMBASSADORS Educating and engaging thousands of people in the movement to end MS is a big job and the Utah-Southern Idaho Chapter can’t do it alone! Movement Ambassadors are people who want to do something now to end MS and are passionate about engaging other people in the movement. Talking to someone in the grocery line about the National MS Society, blogging about MS, forming a Walk MS or Bike MS team or speaking to your workplace during MS Awareness Week are just a few of the countless ways ambassadors can get involved! If you’d like to learn more, contact Mykenzie Hydo at 800-344-4867 (option 1), or Mykenzie.Hydo@nmss.org. TOLL FREE NUMBER 800 344 4867 | 9 advocacy Make Your Vote Count disability, that’s a lot of voices not being heard. Make sure yours is. National Voter Registration Day is September 25, 2012. Register yourself and learn how you can register others at – USA.gov/Citizen/Topics/ Voting/Register.shtml. Prepare to Vote This year, citizens in 30 states will have to comply with voter identification laws. Contact your local polling precinct ahead of time to find out what you’ll need. Also ask about accessibility: you don’t want to show up, only to find out you can’t get in the door. Since 2005, The Help America Vote Act requires every precinct in the country to have at least one voting machine or system accessible to persons with disabilities, including those with vision impairments. Learn more at AAPD.com/What-We-Do/Voting/. If it’s difficult to vote in person, plan to vote absentee. Learn more at LongDistanceVoter.org. The Informed Voter Election Day 2012 is on the horizon, so get ready to cast your vote for who best represents the issues you care about. Here’s what you need to know to vote in the elections on November 6. Go to nationalMSsociety.org/advocacy to learn more about issues important to people with MS, such as health care, accessibility and medical research. Then find out where the candidates stand on those issues – YourCandidatesYourHealth.org is one place to start. The Big Picture This fall, Americans will cast votes for the presidency, every member of the U.S. House of Representatives and one-third of the U.S. Senate. What’s different? Since the 2010 census, 15 million Americans became eligible to vote and an anticipated 50 million more will vote this November due to stronger engagement in national campaigns. However, people with disabilities register to vote at a 16 percent lower rate than other Americans. With 1 in 10 eligible voters having a 10 | YOU CAN HELP Visit nationalMSsociety.org/advocacy for more information on these important issues, to sign-up for Advocacy eNews, and also on how to contact your legislators to ask them for their support on these critical issues. cureMSutah.org - cureMSidaho.org Volunteer Safia Keller to take Board Reins “I’m excited to pick up where Bob brought us and to take the initiatives we started under his leadership to the next level,” Safia said of her plans for her two-year term. “I also look forward to connecting people even more through our wonderful volunteers, the various services we offer and the important fundraisers we host. It all helps to create a world free of MS.” Safia Keller and Bob Harmon at Bike MS Idaho Safia Keller will be the first to admit she has big shoes to fill when Bob Harmon passes the baton and she becomes the Chapter’s Board Chair in November. Safia, who is the director of corporate relations at Westminster College, first started volunteering with the Chapter about a decade ago as a committee member for the annual Women on the Move luncheon and started riding in Bike MS about five years ago. Seeking to further contribute her professional leadership skills, she became a member of the board of trustees in 2007. wantedvolunteers The Southern Utah Walk MS event in St. George on October 20 is our final large event of 2012. Have you signed up to walk or volunteer? Do it today by visiting walkMSutah.org thankyou Many thanks to all of our wonderful volunteers for a great event season! Walk MS, Bike MS, Stand to Cure, Dinner of Champions, Women on the Move and DIY Events! Wow! Please make plans to join us again. We couldn’t have done it this summer without you! What about Bob? He’s not going anywhere! “There are many ways to engage and support this incredible organization. I look forward to continued participation in the great fundraising events where I have enjoyed building relationships with amazing people,” he says. “Safia will do a fantastic job, especially with her electric enthusiasm, incredible passion and ability to engage and move people. She will grab her sneakers and keep on the move because our chapter is progressively moving forward.” We are grateful for all Bob has done for our chapter and look forward to Safia taking us to the next level. Thank you both! CREATE A DIY EVENT Did you know you can host your own fundraising event to help create a world free of MS? Do It Yourself (DIY) fundraising events are organized by a third party (that’s you), help spread awareness and also can raise funds. They can be small and organized by an individual, large and hosted by a local business or anything in between. Regardless, DIY events let you add your own fun creative flair to helping to create a world free of MS. For more information on DIY fundraising, contact our Volunteer Coordinator by calling 800-344-4867 (option 2) or at GetInvolved@nmss.org. TOLL FREE NUMBER 800 344 4867 | 11 1440 Foothill Drive, Suite 200, Salt Lake City, Utah Join us on Facebook MSutahIdaho Your MSConnection HAS ARRIVED calendar @ A Glance New programs are always being added and many require advance registration. Please check the Chapter’s online calendar (cureMSutah.org or cureMSidaho.org) or call 800-344-4867 for more information and to RSVP. October 1 Society Scholarship Application Online 4 Regional Teleconference, MS & the Eye 4 Chapter Open House, SLC 17 St. Luke’s Elks: Insurance, Meridian 18 How to Hire In-Home Help, presented by The Caregiver Academy, Taylorsville 20 Walk MS Southern Utah, St. George november ALL National Caregiver Month 14 St. Luke’s Elks: Nutrition & MS, Meridian 15 Assisted Living & Managed Care, presented by The Caregiver Academy, Taylorsville 22 Thanksgiving Ongoing M, W, F WRAP MS Exercise Group, University of Utah T MS Exercise Group, Orem Sports Medicine T, TH MS Aquatics Class, West Boise YMCA Do you know of a program in your community that benefits people with MS? Tell us about it and we’ll add it to the Chapter’s Calendar. Self-Help Groups Learn, grow and connect. Visit the Chapter’s online calendar or call us for a group near you. save the date Annual Meeting is January 30, 2013