SUMMER 2012 Arizona Chapter
MS Connection Newsletter
INSIDE 04 THIS ISSUE
taking on walk ms
05
11
13
advocacy: make your vote count
upcoming volunteer opportunities
research updates
2
MS connection: Summer 2012
NEW STAFF
WELCOME Jennifer Koeller! Join Walk MS this fall! Learn more about our three locations on page 4
Connect with us online: Arizona Chapter www.arizonaMS.org
Follow us: facebook.com/arizonaMS twitter.com/AZMSSociety On the Cover: Walk MS is a blast! Read more about our three walk sites on page 4
The chapter welcomes our newest addition to our team Jennifer Koeller as the Direct Services Manager. In her new role as the Direct Services Manager, Jennifer will provide information and assistance in navigating community resources and services for people living with multiple sclerosis and their families throughout the state. Jennifer started her work with the National MS Society in 2009 at the Information Referral Center (IRC) in Denver, Colorado. She has a Bachelor‘s degree in Psychology, Sociology and Women‘s Studies from Fort Lewis College in Durango, CO. Jennifer has worked in the nonprofit sector for 13 years. Her experience includes working for both small and midsized organizations in the areas of direct service, programs and fundraising. Prior to the National MS Society, she was the Job Placement Coordinator and later Development Director for Work Options for Women, a culinary training and job placement program in Denver. Jennifer is excited to be a new resident of Phoenix and having the opportunity to explore all the beauty that Arizona has to offer.
3
nationalmssociety.org | 1-800-344-4867
LIVING WITH MS
FREE FROM FALLS Our new 8-week fall prevention program, in Scottsdale, is designed for people with MS who are ambulatory, but who may be at risk for falling. Every Friday, October 19th to December 14th (except 11/23), participants will meet to learn about risk, tips, and strategies to reduce falls, and exercise to enhance safety and stability. Each week’s 2-hour program (1:00 p.m. to 3:00 p.m.) will have two parts; a discussion component focused on awareness of issues related to falls and an exercise component directed to improving postural alignment, balance, endurance and mobility. A supportive group atmosphere and expert rehabilitation, health and wellness instructors will develop a personal plan to maximize safety and quality of life. Application Deadline: Friday, October 5, 2012 | Cost: $60 per person
National Multiple Sclerosis Society Arizona Chapter 5025 E. Washington Street, Suite 102 Phoenix, AZ 85034 1-800-344-4867 Chairman: Terry Johnson Chapter President: Jim Elfline Editor & Design: Jessica Read Š 2012 National Multiple Sclerosis Society, Arizona Chapter
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.
4
MS connection: Summer 2012
LIVING WITH MS
TAKING ON WALK MS
“The walk is a blast! Everyone walking is excited to be there.” Committee as a Team Recruitment CoChair and the Team Captain for the Team In Motion team. “For me, I am one of the blessed, that I still am in motion. I’m lucky. It’s a wake-up call for me to be thankful and give back.” As for Walk MS, Burge adds, “The Walk is a blast! Everyone walking is excited to be there. The comradery of the people walking, being a person with MS… it lets you know that there are people out there who care and you get to see that. It’s a feel-good event.” n
When Gilbert resident Pamela Burge was 35 years old, she felt her right cheek start to get numb. This numbness crept from her cheek to her lips to her nose, and within a day she lost all feeling on the right side of her face. After many tests and specialists, then finally a painful spinal tap, Burge learned she had MS. “After hearing my diagnosis, I didn’t just feel numb – I literally froze in my tracks,” said Burge. “Thankfully, I found help at the local chapter, who provided classes for all local residents who were newly diagnosed with the disease,” said Burge, noting the program is still available today. “Like most of the MS community, I started taking part in the annual Walk MS event almost immediately.” said Burge. Today, she is on the Phoenix Walk MS planning
JOIN US!
Learn more or register today at walkMSarizona.org. Or, you can contact Lisa at (480) 455-3954 (West Valley and Phoenix Walk MS) or Lynette (Prescott Walk MS) at (480) 455-3962. 5th Annual Prescott Walk MS Saturday, October 6, 2012 Yavapai College, Prescott 1st West Valley Walk MS Saturday, October 13, 2012 Westgate City Center, Glendale 25th Annual Phoenix Walk MS Saturday, November 3, 2012 Phoenix Zoo & Desert Botanical Garden
5
nationalmssociety.org | 1-800-344-4867
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 advocacy
Make your vote count by Renee Vandlik
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.
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. And with 1 in 10 eligible voters having a disability, that’s a lot of people whose voices aren’t being
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
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. Renee Vandlik is the Society’s director of State Government and Local Government Relations.
6
MS connection: Summer 2012
7
nationalmssociety.org | 1-800-344-4867
Mark your calendar
local events
Free from falls
September 15, 10:00am - 12:00pm YRMC Corporate Center 2400 S. Avenue A, Yuma Attend this collborative MS Town Hall to learn more about resources, MS education and self-empowerment.
October 19 - December 14 HealthSouth, Scottsdale Contact Erika Edholm for more information (800) 344-4867, option 1 or erika.edholm@nmss.org Join us for a fall prevention program designed for people living with MS. Learn tips and strategies to reduce the risk for falls and exercises to enhance balance and safety. See page 3 for more details.
MS SOcial Club: Breakfast & Bowling
Boys Night Out
Resource Fair & Town Hall Meeting
Friday, September 28 Lucky Strike Bowl 4015 E. Speedway, Tucson Join other adults affected by MS to enjoy a variety of activities and connections. The MS Social Club motto is “Go Forth and Have Fun!” Register by September 21 by calling (520) 937-8068 or emailing Sue at susanrandall@tucsonaz.gov.
TELECONFERENCE: MS & the Eye Thursday, Oct 4, 2012 6:30pm – 7:30pm Visual symptoms are common in people with MS. In fact, they are the first symptoms for many people. The visual symptoms that occur in MS may be the result of optic neuritis— inflammation of the optic nerve—or lesions (damaged areas) along the nerve pathways that control eye movements and visual coordination.
Saturday, October 13, 10:00am - 3:00pm Bartlett Lake Marina Join other men living with MS and male care givers for the annual Boys Night Out on Bartlett Lake. This guys-only day on the lake will be spent aboard a large motorized boat grilling lunch, fishing, swimming and having a great time! Registration is required.
20s & 30s Thursday, October 11, 6:30pm Aloft Phoenix Airport The 20s & 30s Squad is made up of people in their 20s and 30s who want to have fun while living with multiple sclerosis. Continued on Page 10
learn about other events available in your area at http://calendar.arizonams.org
8
MS connection: Summer 2012
SUPPORT GROUPS AHWATUKEE Foothills/tempe/chandler Lynn (480) 414-7172 Renee (480) 940-0521 3rd Monday of the month from September-June, 10:00am Ahwatukee CHW Urgent Care Conference Room 4545 East Chandler Blvd.
BULLHEAD CITY Nancy (928) 768-2668 2nd Wednesday of the Month, 12:30pm 1855 Arizona 95
CENTRAL PHOENIX (DAY) Chuck (602) 956-8129 2nd Monday of the month, 10:00am First United Methodist Church 5510 N. Central Avenue
EAST VALLEY Deb (480) 890-1488 3rd Thursday of the month, 10:00am 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, 5:00pm Banner Neuro Wellness 207 N. Gilbert Rd., Suite 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, 12:00pm First Southern Baptist Church 10250 N. 59th Avenue
KINGMAN Ralph (928) 897-3801 3rd Saturday of the month, 3:00pm Kingman Regional Medical Center Choila Room 3269 Stockton Hill Road
NORTH SCOTTSDALE Lisa (480) 860-2367 2nd Tuesday of the month, 4:30pm Scottsdale Senior Center 10440 East Via Linda, Room 8
9
nationalmssociety.org | 1-800-344-4867
PRESCOTT VALLEY/PRESCOTT
WOMEN’S GROUP-MARICOPA COUNTY
Lanny (928) 708-9352 2nd Thursday of the month, 10:00am Stepping Stones Meeting Room #2 6719 E. 2nd St., Suite A, Prescott Valley
Susan (480) 829-6563 Last Saturday of the month, 10:00am St. Joseph’s Hospital Conference Room 1 350 W. Thomas Rd., Phoenix
SIGNIFICANT OTHERS Lois (602) 672-9234 Please call for meeting time & location
SUN CITY
can’t get out to any of the listed support groups?
Judy (623) 972-3941 Karen (623) 584-8575 1st Thursday of the Month, 10:30am First Presbyterian Church 12225 North 103rd Ave
Join us for a statewide skype group!
TUCSON NORTHWEST GROUP
1st Tuesday of the month, 3:00 pm
Cindy (520) 887-8905 Carol (520) 797-0405 2nd Wednesday of the month, 10:00am Casas Adobes Congregational Church 6801 North Oracle Road
TUCSON CENTRAL GROUP Crystal (520) 271-3807 Please call for meeting time & location
Eldene - (480) 860-9359
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.
10
MS connection: Summer 2012
Local Events Continued from Page 7
No Boys Allowed Wednesday, October 16, 6:00 - 8:00pm Disability Empowerment Center No Boys Allowed is a women-only social/ educational program which provides an opportunity for women impacted by multiple sclerosis to meet others with similar experiences. Join us for a discussion on Solutions for Better Living with MS: “Bring your Questions - Get your Answers”
TELECONFERENCE: Aging & MS Thursday, December 6, 2012 6:30 - 7:30pm Dr. James Bowen of Swedish Neuroscience Institute will address the issues of MS and aging, including age and disability related difficulties, relationship changes, cognitive changes, and effects on employment and Medicare. He’ll conclude with advice to help people remain optimally functional as they age.
11
nationalmssociety.org | 1-800-344-4867
join the movement
volunteer for a cause! If you have the desire to get involved and be part of making a positive difference, consider volunteering with the chapter! Volunteers are a driving force of the movement to cure MS. Join the movement today and volunteer for those living with MS. We’ve got tons of opportunities for all ages! Check them out:
Walk MS
With three Walk MS events to choose from, there are several opportunities to help out. Join is in Prescott on October 6, West Valley on October 13, and Phoenix on November 3. Volunteer jobs include: • Set up: Assist with the setup of equipment such as tents, tables, chairs. Hang banners and signs. • Registration: Check in participants or volunteers, collect pledges and provide instructions to participants. • Rest-stop: Pass out water and snacks to the Walkers and cheer them on! • Parking Lot Attendants • Clean-up Crew: Tear down tables and chairs, pick up and dispose of trash. Pack and load supplies.
Rock ‘n’ Roll Marathon
Be a part of supporting the MS Rockstars (our running/walking team) as they take on the Rock ‘n’ Roll Arizona Marathon & 1/2 Marathon on January 20, 2013. • Expo Volunteer: Help at our booth at the Health & Fitness Expo, educating others on what MS is, who it affects and how they can get involved. • Carbo Load Dinner: Greet and direct the participants at the Carbo Load dinner on Saturday, January 19. • Cheer Zone : Grab those pom poms and help us cheer our MS Rockstars on! • Finish VIP Lounge: Welcome back the MS Rockstars and their families after the race.
12
MS connection: Summer 2012
FUNDING THE MISSION
THANK YOU BIKE MS 2012 SPONSORS! Year after year cyclists clip into their pedals and ride their bikes throughout the state of Arizona as a means to an end. What’s that end? A world free of MS. However, each year these cyclists are not alone. Every year more and more sponsors are joining the movement by donating their staff, time, and money to help end multiple sclerosis. The year 2012 was no different. As the ride transitioned into a destination ride in the red rock mountains of Sedona Verde Valley, sponsors of Bike MS stepped up to ensure the success of the ride. Five new bike shop
sponsors joined us in 2012 including Sport Chalet, Over the Edge, Curbside Cyclery, Sedona Bike & Bean, and Absolute Bikes. Diamondback Bicycles, a division of Raleigh America, also came on-board and donated three bikes to the event to use as auction or fundraising items. But leading the way was none other than Sam’s Club who almost doubled their 2011 total event contribution with $126,750.00 raised for the 2012 Bike MS Arizona ride; and raised a whopping $1.5 million nationally for the MS Society through Bike MS! n
Thank you so much to OUR BIKE MS sponsors! Sam’s Club n Wolters Kluwer n Discount Tire n New Belgium Brewing Trans City Property Management Inc. n Diamondback Bicycles Sedona Chamber of Commerce n Cottonwood Chamber of Commerce Sport Chalet n Trailhead Bike Shop & Café n Bike Barn n Landis Cyclery Absolute Bikes n Over the Edge n Curbside Cyclery n Sedona Bike & Bean
13
nationalmssociety.org | 1-800-344-4867
research
New findings at AAN meeting by Marcella Durand
In April, over 12,000 neurologists and researchers gathered in New Orleans to present the latest research in multiple sclerosis at the American Academy of Neurology’s annual meeting. Here are some highlights.
STOPPING THE DISEASE
restoring what’s lost
stopping MS In a phase III trial that compared intravenous alemtuzumab against standard dosing of Rebif (interferon beta-1a), the relapse rate in 840 people with relapsingremitting MS was reduced by 49 percent or the risk of disability progression reduced by 42 percent. Genzyme plans to file for FDA approval of alemtuzumab for MS in the second quarter of 2012. STOPPING THE DISEASE
RESTORING WHAT’S BEEN LOST
ENDING MS FOREVER
STOPPING THE DISEASE
RESTORING WHAT’S BEEN LOST
Results of a phase III trial of Gilenya (fingolimod) indicated that a daily dose reduced the relapse rate by 48 percent compared with placebo in 778 people with relapsing-remitting MS. Gilenya is the first oral disease modifier for MS to be approved by the FDA.
Researchers have found that blocking LINGO-1, a nervous system molecule, increases myelin repair in mice. The first human trial evaluated the safety of the approach in 42 people with relapsing or secondary-progressive MS. Researchers reported no serious adverse events and support moving this repair strategy to a phase II clinical trial.
RESTORING WHAT’S BEEN LOST
ENDING MS FOREVER
ending MS forever In a study of 500 people with MS, researchers found that men with low vitamin D may be more susceptible to disability, while women with low levels of the vitamin had more brain lesions if they had a genetic marker common to people with MS. The study points to possible gene and gender influences in vitamin D levels and the risk of developing MS. ENDING MS FOREVER
For more AAN news, visit nationalMSsociety.org/research.
14 NEWLY DIAGNOSED
How i communicate about ms with my children by Julie Stachowiak, PhD
I have twin girls who are now six years old. I was diagnosed with multiple sclerosis a couple of years before they were born, so it has always been present in our little family. I guess there was never a question about whether or not to share my MS status with them — it was too big to hide. One of my first memories of the girls really understanding that I wasn’t entirely well was when I had been reduced to tears by some incident.
MS connection: Summer 2012
One of my small daughters came to where I was sitting on the ground with my head in my hands and adjusted my collar, saying, “Here you go, Mommy. I’ll take care of you.” The experts will tell you (and I can confirm) that young children pick up when a parent is not feeling well. Child psychologists will tell you that this can manifest as increased clinginess, regression in terms of speech or potty-training progress, or reversion to younger behavior (such as needing a pacifier). Older children may get worried that something terrible is happening — that their parent will die, that they will die, that they did something bad and whatever is going on is all their fault. This may turn into sleeping issues or nightmares, withdrawing emotionally, or acting out at school. Those same experts say that we should answer all questions about our MS honestly and directly, adjusting information as they get older. That might, or might not, work for you. I know that some people choose to keep their MS from their children until they reach a certain age or something happens where it must be revealed. These parents may feel they are protecting their children from the pervasive worry of having a sick parent. I think that it is an individual choice. We all have to make our own way as parents. I can’t tell you what to do — I cannot tell you that you must be open about your MS with your children.
Julie Stachowiak with her two daughters
The only thing I can tell you with 100 percent clarity is that it is impossible to show your children too much love.
15
nationalmssociety.org | 1-800-344-4867
As far as my situation goes, I have chosen to be very open with my daughters (in an ageappropriate way). I tell them when I am tired and I tell them when I feel better and I make sure that we do something fun and active during those times. We discuss MS and I have tried to explain to them what is happening in my brain. They know that I don’t like it when music is too loud or when we’ve been outside in the sun for too long.
as far as my situation goes, I have chosen to be very open with my daughters ... I tell them when I feel better and I make sure that we do something fun and active during those times. I won’t say that I have handled it perfectly. I have seen one of my daughters looking at me with a furrowed brow too many times, while the other one may come into my bedroom with “nightmares,” when I suspect she really just wants to check on me. However, I do think that they are considerate, gentle and compassionate. They seem slightly less self-centered than some of their classmates. They are not afraid of people who are different — we have friends with Down syndrome, who use wheelchairs and who are hooked up to oxygen. My girls don’t seem to see any of it, just the person whom they want to tell about their Halloween costume or their newest toy. I’m proud of that. n
Society resources for families The Society’s “Family Matters” Web page at www.nationalMSsociety.org/Family Matters contains links to helpful brochures, programs and resources. Each issue of Keep S’myelin has fun, engaging activities to help parents and children learn about and discuss MS together. Go to www.nationalMSsociety. org/keepsmyelin for back issues and subscription information. Search for and download Society brochures Plaintalk — A Booklet about MS for Families for information on talking about MS with family members and Someone You Know Has MS for children at www.nationalMSsociety.org. Join the online “Family Matters” community at www.MSconnection.org. Watch the Society video “Parenting with MS” at www.youtube.com/watch?v= V93TG_0LJiA.
Diagnosed with MS in 2003, Julie Stachowiak, PhD, is the author of The Multiple Sclerosis Manifesto and ms.about.com. Originally published at blog.nationalMSsociety.org.
5025 E. Washington Street, Suite 102 Phoenix, AZ 85034
SAVE THE DATE
UPCOMING EVENTS September 15: Cooks & Chords - Phoenix 22: Cooks & Chords - Tucson October 6: Walk MS Prescott 11: 20s & 30s Squad - Phoenix 13: Walk MS West Valley Boys Night Out Boat Trip - Barlett Lake 16: No Boys Allowed - Phoenix 19: No Boys Allowed - Prescott November 3: Walk MS Phoenix Learn more or RSVP for these events at http://calendar.arizonaMS.org
Play a part in making a world free of MS through Workplace Giving! We are very proud to partner with Community Health Charities of Arizona each year, as they help us unite our cause with donors in many of the Arizona’s best places to work. If you would like to open a workplace giving campaign in your company, please call (623) 362.2020 or visit healthcharities.org/arizona for more information.