Arizona MS Connection Fall 2013
Fall 2013 ARIZONA Chapter MS Connection Newsletter ROCK THE WALK THIS FALL! page 4 INSIDE 03 THIS ISSUE meet our newest staff member! 07 10 14 upcoming local events commit to eating well Itâ€™s time for cooks & Chords! K 02 MS connection: FALL 2013 A MESSAGE FROM OUR chapter president DIFFERENT ways to give Hello! WALK NMSS WALK BIKE NMSS BIKE take your involvement to the next level. Join in as an event participant, volunteer, or donor! NMSS It’s hard to believe that summer is over and we’re heading into Fall. While cooler weather is still a long way off we’re still looking forward to an exciting fall season, with inspiring events CHALLENGE and exciting programs for people who care about multiple sclerosis. If you’re not able to join us at an upcoming event or program, think about giving in a different way. BIKE Consider playing a part in creating a world free of MS through CHALLENGE workplace giving! You can designate a gift to the chapter by setting up automatic payroll deductions through Community Health Charities or Combined Federal Campaign. Talk to your payroll department to set it up. If your employer does not have a workplace giving program you can call me to help get one started. Giving has never been easier! You can double your gift with matching funds! Many employers will match charitable contributions made by their employees. To find out if your company has a matching gift policy, visit http:// tinyurl.com/MS-matching-gifts. CHALLENGE Thanks for your continued support! Keep reading to learn more about what we have in store for you in the coming months! Connect with us online: arizonaMS.org Cheers, Jim Elfline Chapter President facebook.com/arizonaMS twitter.com/AZMSSociety On the cover: Glynis and Nancy from the Red Hot Chili Steppers enjoy Walk MS. Read more about them on page 4! P.S. Remember to use the code #24815 for Combined Federal Campaign. nationalmssociety.org | 1-800-344-4867 03 WELCOME ERIN! New Staff Joins the Arizona Force Erin Roediger is thrilled to fill the role of Development Coordinator, Special Events for the Arizona Chapter and will be focusing on Bike MS. Erin recently moved back home to sunny Arizona after moving to California for college, followed by living life on the beach for a few years. During her time in California, she had the privilege of working at Avon Walk for Breast Cancer for more than 5 years. While being surrounded by pink, she sharpened her skills in recruiting participants, volunteer coordination, and event logistics. In 2011, Erin had the opportunity to staff the Bike MS: Coastal Challenge ride in Ventura, CA and had a marvelous time. Also, she continued her education with a Masters in Clinical Psychology which has become very handy when building relationships and working on events. National Multiple Sclerosis Society Arizona Chapter 5025 E. Washington St., Ste. 102 Phoenix, AZ 85034 1-800-344-4867 Chairman: Terry Johnson Chapter President: Jim Elfline Editor & Design: Jessica Ishikawa © 2013 National Multiple Sclerosis Society, Arizona Chapter Erin recently worked in Colorado as a grassroots organizer, where she spent time building relationships with volunteers and witnessed firsthand the power local communities possess when they work hard to accomplish something greater than themselves. All of her experiences have led her to this position. She is thrilled to be working alongside everyone on this journey to find a cure for MS! Let the Ride of a lifetime begin…. Information provided by the Society is based upon professional advice, published experience and expert opinion. Information provided in response to questions does not constitute therapeutic recommendations or prescriptions. The National Multiple Sclerosis Society recommends that all questions and information be discussed with a personal physician. The Society does not endorse products, services or manufacturers. Such names appear here solely because they are considered valuable information. The Society assumes no liability for the use or contents of any product or service mentioned. 04 MS connection: FALL 2013 FUNDING THE MISSION Hot to trot at Walk MS! like this,” she added. A little competitive spirit was thrown in for good measure, with prizes awarded to teammates who secured the largest donations. Walk participants dressed up and even won Best Team Tent in 2012! A very enthusiastic group from Insight Enterprises, Inc., in Tempe, AZ, formed the Red Hot Chili Steppers to participate last year in the 25th Annual Phoenix Walk MS. The Chili Steppers came out in full force, with 17 Insight employees and family members walking, and collecting more than $11,000 in donations to the National Multiple Sclerosis Society – AZ Chapter. These donations will support cutting-edge research, drive change through advocacy, facilitate professional education and provide programs and services that help people with MS and their families move their lives forward. “Many of our employees are personally affected by Multiple Sclerosis, so it’s a very important cause to our organization,” said Glynis Bryan, Chief Financial Officer of Insight. “Further, we enjoy spending time together and involving our families at events Insight takes pride in giving back to the community and encourages its employees to support great causes, such as the National MS Society. “Walk MS is one of our favorite team activities of the year,” said Nancy Swygert, Executive Assistant at Insight and Walk MS Team Member. “It allows us to help some very deserving people while enjoying the great weather and a fun walk.” 05 nationalmssociety.org | 1-800-344-4867 DONâ€™T MISS THE FUN OF WALK MS THIS FALL! JOIN US AT ONE OF THESE AWESOME LOCATIONS! *NEW* October 5: Prescott Yavapai Community College November 2: Kingman Mohave Community College October 12: West Valley Westgate City Center & Tanger Outlets, Glendale *NEW* November 2: Phoenix Phoenix Zoo & Desert Botanical Garden November 9: East Valley Desert Breeze Park, Chandler Visit walkMSarizona.org to learn more about each of these wonderful events. 06 MS connection: FALL 2013 LIVING WELL WITH MS EVERYDAY MATTERS! You are invited to join a new, in-person National MS Society program this Fall with an exciting new 5-week curriculum called Everyday Matters: Living your Best Life With MS (everydayMSmatters.org). Put positive psychology to work in your life! Videos, presentations from a mental health professional, and handouts will help you increase your knowledge of the principles of positive psychology and gain an understanding of how these principles can be used as a strategy for living with MS, as well as identify additional community resources for support and connection. The Arizona chapter will be offering this program in Tucson with a focus on families dealing with MS. We understand that multiple sclerosis doesn’t just impact the family member with the MS diagnosis in their medical records, but the entire family unit. Everyday Matters will begin Saturday, October 19 and will be facilitated by a local counselor, Stacey Tarquinio. For more information or to register for this program, please call 1-800-FIGHT-MS, visit the Arizona Chapter Calendar at http://calendar.arizonams.org, or contact Erika.Edholm@nmss.org. Saturdays October 19 – November 16 10:00 AM – 12:00 PM Reid Park Therapeutic Recreation Center 1000 S. Randolph Way, Tucson to register for or get more information about any of the events listed, as well as learn about additional events, visit http://calendar.arizonams.org or call 1-800-344-4867 (1-800-FIGHT-MS) and press “1.” Mark your calendar local events CogniFitness – Bullhead City Starting September 17, 2013 Each Tuesday for 8 weeks $30 for all 8 sessions 10:00 AM – 12:00 PM Learn to improve focus and concentration, memory, organization, problem solving & critical thinking skills. Must register ahead of time. Call Lynette at 480-455-3962 for status of this program and if interested Yoga – Yuma Satursday, September 14 – November 16 (Can join class at anytime) Serenity Yoga Studio 720 E. 22nd St., Yuma Cost: $10 for 12-week session To register call 520-325-0755 No Boys Allowed – Prescott September 13, 2013 6:00 PM Method Coffee Willow Creek Road (by Fry’s grocery store) Call Lynette at 480-455-3962 or email firstname.lastname@example.org if attending Boys Night Out Boat Trip Saturday, October 19th 10:00 AM – 4:00 PM EveryDay Matters See page 6 for details. 07 20s & 30s Picnic Sunday, October 20th 11:00 AM – 3:00 PM McCormick-Stillman Railroad Park Fenstermacher Pavilion 7301 E. Indian Bend Rd., Scottsdale No Boys Allowed – Prescott November 8, 2013 – 6:00 PM Method Coffee Willow Creek Road – by Fry’s Grocery Store Call Lynette at 480-455-3962 or email email@example.com if attending No Boys Allowed Wednesday, November 20th 6:00 PM – 8:00 PM Disability Empowerment Center Arizona Chapter’s Annual Meeting December 10th 6:00 – 8:00 PM In Person: Mayo Clinic Hospital 5777 E. Mayo Blvd., Phoenix Teleconference: Kingman Regional Medical Center, Yuma Regional Medical Center, other locations TBD. Cost: $5 Chair Yoga for MS Ongoing – Thursdays 11:00 AM – 12:00 PM Adobes Congregational Church 6801 N. Oracle Rd., Tucson Cost: $15 for 6 weeks RSVP to Robin Rainwater at 520-820-8187 or email firstname.lastname@example.org 08 If you would like more information about support groups in your area, call 1-800-344-4867, and press ‘1’ or contact a Listed leader. SUPPORT GROUPS CENTRAL PHOENIX (DAY) Chuck: (602) 956-8129 2nd Monday of the month, 10:00 AM First United Methodist Church 5510 N. Central Ave. EAST VALLEY Deb: (480) 890-1488 3rd Thursday of the month, 10:00 AM Grace United Methodist Church 2024 E. University Dr., #502 FLAGSTAFF Kathy: (928) 774-2375 Please call for meeting time & location. GILBERT - Active with MS Mark: (480) 518-5971 4th Thursday of the month, 5:00 PM Banner Neuro Wellness 207 N. Gilbert Rd., Ste. 205 This group is open to all levels of activity and geared towards those aspiring to become more active or who are currently involved in sports. GLENDALE Deborah: (623) 974-6944 1st Tuesday of the month, 12:00 PM First Southern Baptist Church 10250 N. 59th Ave. KINGMAN Pati: (928) 692-0979 3rd Saturday of the month, 10:30 AM Kingman Regional Medical Center Ocotillo Room 3269 Stockton Hill Rd. NORTH SCOTTSDALE Lisa: (480) 860-2367 2nd Tuesday of the month, 4:30 PM Scottsdale Senior Center 10440 E. Via Linda, Room 8 PRESCOTT VALLEY/PRESCOTT Alan: (928) 710-1257 Larry: (928) 775-7334 2nd Thursday of the month, 10:00 PM Wyndam Garden 4499 Hwy. 69, Prescott Sierra Vista Judie: (520) 378-4400 4th Wednesday of the month, 11:00 AM Country House Cafe 4373 Arizona 92 SIGNIFICANT OTHERS Lois: (602) 672-9234 Please call for meeting time & location. 09 nationalmssociety.org | 1-800-344-4867 SUN CITY Judy: (623) 972-3941 Karen: (623) 584-8575 1st Thursday of the Month, 10:30 AM First Presbyterian Church 12225 N. 103rd. Ave. DONâ€™t SEE A support group IN YOUR AREA? Join us for a statewide skype group! TUCSON NORTHWEST GROUP Eldene: (480) 860-9359 1st Tuesday of the month, 3:00 PM This group uses the free internet service Skype to meet from any location in Arizona. Call Eldene for more details on how to participate from the comfort of your home. Cindy: (520) 887-8905 Carol: (520) 797-0405 2nd Wednesday of the month, 10:00 AM Casas Adobes Congregational Church 6801 N. Oracle Rd. TUCSON CENTRAL GROUP Crystal: (520) 271-3807 Please call for meeting time & location. YUMA Educational empowerment group Erika: (480) 455-3959 1st Thursday of the month, 6:30 PM Yuma Regional MC Business Center 399 E. 32nd St. YUMA Psychological empowerment group Erika: (480) 455-3959 3rd Saturday of the month, 9:30 AM Yuma Rehabilitation Hospital 901 W. 24th St. 10 MS connection: FALL 2013 call to board aNNUAl MEETING The annual meeting is an opportunity for all of our members and supporters to learn ways in which we address the challenges of each person whose life is affected by MS. This year, attendees will hear an update on MS research focusing on progression. This event will be presented via video conference throughout the state of Arizona. To find a location to watch the event in your area, visit our website. Registration is $5. RSVP to attend by visiting http://calendar.arizona.MS.org and selecting December 10 or by calling 800-FIGHT-MS (800) 344-4867. If you or someone you know would like to be considered as a candidate for the board, please send an e-mail expressing interest to email@example.com. Nominations must be submitted by December 1, 2013. All nominations will be considered by the Chapter’s Governance Committee. Tuesday, December 10, 2013 6:00 PM – 8 PM Mayo Clinic Hospital 5777 E. Mayo Blvd. Education Center, Side B Phoenix, AZ 85054 nationalmssociety.org | 1-800-344-4867 11 Living with ms Commit to eat well Take control of your health, starting with a commitment to eat well. Here are some suggestions for how to do that from the Can Do MS staff and Andrea Glenn, a Society volunteer diagnosed with MS in 2003. • Eat three meals every day and always have breakfast. People who skip meals tend to overeat later. • Make healthy snacks and meals ahead of time so you don’t give in to temptations. • Eat more vegetables and three pieces of fruit every day. Add leafy dark greens to your lunch. Snack on raw fruit and vegetables such as carrots, apples or celery. • Be aware of portion size. Many restaurant meals are large enough to feed two people. Take half home for lunch the next day, or split an entrée with someone else. • Eat whole grains such as brown rice, whole grain bread and whole grain cereals. • Enjoy a couple of low-fat dairy products every day, such as 1% milk or yogurt. • Use olive oil or canola oil (in moderation). • Read food labels and pay special attention to saturated fats and trans fats. • Drink plenty of water — it’s calorie-free! • Enlist a friend or family member to share your goals for better eating. It helps to be accountable to someone else. • Keep a food diary. Writing down everything you eat will help you better evaluate whether you’ve improved your food habits. nutrition tips for managing fatigue • Have a small snack every few hours to refuel. Pair a protein (i.e. low-fat cheese, 1 tablespoon of peanut butter, a handful of almonds) with a fruit. • Shrink meals and eat more frequently. For example, save half your lunch and eat the rest three hours later. • A small protein snack in the afternoon, such as a cheese stick or peanut butter, can help you be more alert. • Avoid large portions and desserts. Both will increase fatigue. • Avoid too much caffeine. It can lead to restless sleep and increased anxiety. Visit www.nationalMSsociety.org/diet for links to recent research, recipes and articles, brochures, videos and more. Originally published in the New York CitySouthern New York Chapter’s MS Connection. 12 MS connection: FALL 2013 research Progress at AAN meeting Over 12,000 neurologists and other researchers gathered in San Diego in March to share the most up-to-date research on treating neurological diseases such as multiple sclerosis at the annual American Academy of Neurology’s (AAN) meeting. Here are a few highlights from the more than 500 MS-related presentations that focused on stopping MS, restoring function and ending MS forever. Stopping MS Progressive MS STOPPING THE DISEASE RESTORING WHAT’S BEEN LOST ENDING MS FOREVER A small study of an oral blood-pressure medicine, Amiloride, found a reduction of brain shrinkage associated with the disease in 14 people with primary-progressive MS. Further testing in a larger study is now underway. Researchers in a large trial of Gilenya for primary-progressive MS reported good progress in setting up the trial. This is one of several ongoing large studies in progressive MS. professor ebers center receives the john dystel prize from drs. timothy coetzee and bruce cohen was effective in reducing relapse rates and the risk of progression of disability. The study is continuing into a second year and the trial sponsor Biogen Idec has announced plans to apply for FDA approval later this year. Another one-year phase III trial found that injections of twice the standard dose of glatiramer acetate (Copaxone) taken three times per week were effective in reducing relapses and MRI-detected disease activity, with no unexpected safety issues. MS Therapies A large study in France (ENIGM) found that among 200 people who switched from natalizumab (Tysabri) to fingolimod (Gilenya), 32% experienced a relapse during the “washout” interval of 3 to 6 months when no therapy was given. The researchers concluded that switching increases the likelihood of disease reactivation and that the washout period should not be longer than 3 months. Results of a study on peginterferon beta-1a (a new form of Avonex) designed to stay in the body longer than the standard form suggest that peginterferon injected every two or four weeks Results of two phase III trials of oral dimethyl fumarate (Tecfidera), approved by the FDA in March, suggest that the treatment begins to take full effect after three months’ use. 13 nationalmssociety.org | 1-800-344-4867 This effect was sustained over the two-year span of the trials. STOPPING THE DISEASE Several presentations focused on results from extension phases of completed clinical trials in relapsing-remitting MS. To read more, visit www.nationalMSsociety.org/2013AAN. Exploring disease activity An Argentinian study on whether vaccinations can trigger MS attacks found that yellow fever vaccines may substantially increase the risk of MS relapse; therefore, people with MS planning a trip to a region with an increased risk of yellow fever should discuss the risks and benefits of vaccination with their doctor. A small study in Louisiana found that people with higher levels of glucose were more likely to have higher levels of disability. This important lead needs more study to prove a role for blood sugar in MS progression. STOPPING THE DISEASE RESTORING WHAT’S BEEN LOST A few studies focused on ways to track disease progression, including one that analyzed serum samples from people with MS who were taking glatiramer acetate (Copaxone). The researchers were able to find antibody profiles that could detect those who responded to therapy and those who did not. Dr. Nicholas LaRocca of the National MS Society described efforts of the newly formed MS Outcome Assessments Consortium to accelerate development of more effective MS treatments. They will analyze data from completed clinical trials and other studies and work with regulatory agencies to qualify a new outcome measure that can more sensitively track the impact of therapies on disease disability and progression in future trials. Restoring function Several studies focused on the benefits of exercise for brain function and MS symptoms such as fatigue, while others looked at how the brain can adapt to MS damage. To read blog posts by MS researchers on these and other studies, visit blog.nationalMSsociety.org. RESTORING WHAT’S BEEN LOST ENDING MS FOREVER A study on CCSVI did not find a significant difference between 61 people with MS and 20 people without MS when technicians trained in CCSVI assessment used various ultrasound techniques to detect the condition. The first results of another study of controlled endovascular treatment at six months found no adverse events, but also no sustained improvement in venous outflow. Ending the disease forever Several reports focused on risk factors for MS, including one indicating that dietary salt may stimulate activity of key immune cells involved in MS attacks. Read more at www.nationalMSsociety.org/dietarysalt. ENDING MS FOREVER For his extensive work on understanding MS, including the importance of genetic factors in who develops the disease and how genes interact with environmental factors, Professor George Ebers was this year’s recipient of the John Dystel Prize for MS Research, given jointly by the Society and the AAN. Read scientific summaries on the AAN’s website at www.abstracts2view.com/aan. 14 MS connection: FALL 2013 Funding the misSion A taste for the cure at Cooks & Chords Cooks & Chords, A Taste for a World Free of MS is the National MS Society, Arizona Chapter tasting event. Stations of chef-prepared dishes paired with delicious spirits and wonderfullyappointed acoustic music will tantalize guests as they browse packages in our raffle and silent auction. This year’s 5th Annual Cooks & Chords Tucson event will be held on Saturday, September 21st in the courtyard of the spectacular Tucson Botanical Gardens. Restaurants include Borderlands Brewery, Elliott’s on Congress, Gourmet Girls, Cartel Coffee Lab and Barefoot Wines. Guests will enjoy an inspiring program and will feature original Latin, jazz, and blues music from Frank Lopez. The 7th Annual Phoenix Cooks & Chords presented by Express Scripts and Mayo Clinic will be held Saturday, September 28th and will be taking place in Mayo Clinic’s beautiful reception area in Scottsdale. Restaurants include Sierra Bonita Grill, Aiello’s Salumeria, Pita Jungle, Isa’s Pizza, Charr Burger and Salty Sow. Guests will also enjoy an inspirational program that will include an update on MS research by a Mayo Clinic Neurologist and will feature music from Kristie Salerno Kent. Kristie will perform songs from her debut solo album “Believe,” recently released her first book, “Dreams: My Journey with Multiple Sclerosis,” an intimate personal account of her battle to overcome her denial and fear about MS to move forward with her life. Funds from Cooks & Chords directly support programs that increase knowledge about MS, keep families together despite the strain of dealing with chronic illness, provide counseling, help people with MS get and keep jobs, advocate for people with MS, and in every way, encourage empowerment. For thousands of people with MS, these things mean the difference between living a full and active life and just existing. If you are interested in attending please visit our website at arizonaMS.org. 15 nationalmssociety.org | 1-800-344-4867 FUNDING THE MISSION ROCKIN’ and RUNNING FOR MOM As a third year participant of MS Rockstars, a half-marathon and marathon training program, Tim Gendler of Tucson, gets to run for a purpose; he gets to run for his mom. Tim’s mother, Kathy Gendler was diagnosed with MS twenty-five years ago. With several MS150/MS Bike events under his belt, he heard about the MS Rockstar program and had to give it a go! “I liked running before I started training for my first MS Marathon and I LOVE running now” says Tim. The program allows Tim to meet amazing people who share his experiences with MS and it’s an event he looks forward to year after year. Living across county from his mom (pictured below), Tim is not able to see her too often but always thinks of her when running. “I don’t always feel great when I’m running. Heck, sometimes I feel downright awful but I know that when I run, I am helping.” By participating in MS Rockstars program through the National MS Society, Tim is ultimately supporting his mom and knows that he can help make a difference in her life and many others. “MS Rockstars is the program that motivates me to help my mom.” As a fellow Rockstar participant once said, “you don’t have to be a runner to be a Rockstar” and we encourage you to come join us in the MS Rockstar program for an experience you will never forget. To learn more or register for this year’s event, visit MSrockstars.com or call (800) 344-4867. Arizona Chapter 5025 E. Washington Street Ste. 102 Phoenix, AZ 85034 mark your calendars September 13: No Boys Allowed: Prescott 21: Cooks and Chords: Tucson 28: Cooks and Chords: Phoenix October 5: Walk MS: Prescott 12: Walk MS: West Valley 19: Boys Night Out Boat Trip Every Day Matters 20: 20s & 30s Picnic November 2: Walk MS: Phoenix Walk MS: Kingman 8: No Boys Allowed: Phoenix 9: Walk MS: East Valley December 10: Annual Meeting See more events and programs at http://calendar.arizonaMS.org.