National Multiple Sclerosis Society
Spring 2013
MS Connection Newsletter
Colorado-Wyoming Chapter
Colorado-Wyoming Chapter
Every Connection Counts Get better connected with the Colorado-Wyoming Chapter.
/nMSSco.wy
INSIDE THIS ISSUE:
3
8
9
4
WAlk ms 2013
bike ms 2013
Wyoming Bill Passed
COLORADO Check Line 46
Letter from the president
Dear Friends, The days are starting to get longer, which signals the start of the Chapter’s 2013 outdoor event season—a time to connect with family, friends and colleagues and to be part of making a difference. This year we have scheduled 20 exciting, well-planned events, each providing an ideal opportunity to connect more people to our mission and increase support for our vital work. Walk MS, Bike MS, Hike MS and MuckFest MS events offer a way for you to get social and connect—or reconnect—with people from all walks of your life. Consider starting a team this year or grow your team by reaching out to colleagues or acquaintances. If you are interested in connecting with us in an office environment or sharing your administrative, planning, marketing and other skills as a volunteer, we need you. It really does take a village to successfully run all aspects of the Chapter and I encourage you to check out some of the diverse and interesting opportunities available. Connecting people to resources that improve and enhance the lives of people affected by MS is always a top Chapter priority. From conducting educational programs and research forums to establishing new giving options for donors, such as the Independent Spirit Fund, we continually strive to provide a range of activities that foster connectivity, awareness and support. Business connections are a crucial component of our fundraising efforts and we are thrilled to offer marketing opportunities that meet business objectives. We welcome the continued support of Newmont Mining Corporation as title sponsor of Bike MS Colorado and Wells Fargo as presenting sponsor of Walk MS Colorado. We are also pleased to announce that First Interstate Bank of Wyoming has signed on as presenting sponsor for our Wyoming Walk MS and Bike MS events this year and Point B as presenting sponsor of Bike MS Colorado. We greatly appreciate the support of these companies. Connections are at the heart of sustaining a strong, vibrant organization and the Chapter works each and every day to ensure our volunteers, donors, and supporters remain engaged and have exceptional experiences that collectively move us closer to a world free of MS. Make this the year to get connected and join the movement!
Sincerely,
MS Connection is published by the Colorado-Wyoming Chapter, National MS Society 900 S. Broadway, Suite 250 Denver, CO 80209 Info: 800 FIGHT MS (344-4867) Newsletter Distribution—If you have a change of address or would like to receive MS Connection electronically, please call 800-344-4867. If you or someone you know has MS—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 Multiple Sclerosis Society (NMSS) to learn about ways to help manage multiple sclerosis and about the current research that may one day reveal a cure. The NMSS does not endorse products, services or manufacturers. Such names appear here solely because they are considered valuable information. The NMSS assumes no liability for the use of contents of any product or service mentioned. Information provided by the NMSS is based on professional advice and expert opinion. Information provided in response to questions do not constitute therapeutic recommendations or prescriptions. The NMSS recommends that all questions and information be discussed with a personal physician. The NMSS is dedicated to a world free of MS. Chapter President Carrie H. Nolan Board of Trustees Brandt Wilkins, Chair Kyle Ocasek, Chair-Elect Kathryn Spritzer, Secretary Rob Hartnett, Treasurer Carl Berglind Whit Conant John Corboy, MD Claudia Curry Hill Chris Doerr Marley Hodgson III Craig Lopez Frank Monteiro Richard Raymond, MD Randy Schapiro, MD Travis White Jo Wilson Emeritus Trustees George Garmany, MD Ralph Holden David Lord Janet Savage ©2013 National Multiple Sclerosis Society, Colorado-Wyoming Chapter
Carrie H. Nolan President
2
MS connection: Spring 2013
IN THE NEWS
On your tax return...
make your mark to create a world free of MS. Tax season is upon us! You can turn your tax dollars into charitable contributions.
Support the 12,000 Coloradans living with MS and their families. It's easy, and you will remain anonymous. Check line 46 on your 2012 state income tax return. Remember to ask your tax preparer to make a contribution on your behalf.
Let’s Get Moving
$70,000 and Counting! Chapter supporters have been stepping up to the $100,000 Independent Spirit Fund challenge. Last fall Chapter patrons Board Chair Brandt Wilkins and David Alexander established this fund to provide resources that specifically target independence issues of people living with MS. They also challenged the Chapter to raise $100,000 for the Independent Spirit Fund. To date we have received $70,000 in commitments, but we still need your help to reach the challenge goal, which will provide the Fund with adequate funds. Let’s get moving—make your gift today and help provide the resources needed to keep people living with MS mobile and independent! CureMSco-wy.org 1-800-FIGHT MS (344-4867)
COLORADO Check Line 46 on your Colorado State Income Tax Form
and help free the world of MS!
the
Independent Spirit Fund Independence for People living with MS
To donate, send your gift to: Independent Spirit Fund Colorado-Wyoming Chapter, National MS Society 900 So. Broadway, Suite 250 Denver, CO 80209 Note: Indicate “Independent Spirit Fund” on the memo line of your check
or donate online at:
www.nationalMSsociety.org/ISF If you have questions or would like more information, call Kristin Gibbs at 303-698-5430.
3
ADVOCACY
Advocacy at work in Wyoming
HB100 has passed A major success in Wyoming was celebrated when Gov. Matthew Mead signed new legislation that excludes the value of assistive devices from being added to the value of vehicles for registration purposes. “We welcome the vision and support of the Wyoming legislature for passing this bill, and especially thank Rep.
Tim Stubson for authoring and sponsoring this meaningful legislation,” said Sharon O’Hara, executive vice president of the Colorado-Wyoming Chapter. “This will provide tax relief to those who require an adaption to their vehicles related to physical impairments and who are already facing significant physical challenges and medical expenses.” The Chapter’s
MS Advocates were instrumental in raising awareness of this issue by sharing personal stories about the impact of this issue. Advocates argued that vehicle adaptive devices such as wheelchair lifts, hand and arm controls, and special seating should not add value – and taxes – to vehicle registrations. n
Interested in becoming an MS Advocate? Email Alexandra.Moore@nmss.org for more information.
Upcoming Programs Denver Metro Area:
Western Slope
Denver: Walking Poles Workshop Thursday mornings in April. 4-session outdoor workshop PLUS Denver Walk MS on May 4.
Grand Junction: Healthy Eating and MS April 16, 11 am
Northern Colorado and Wyoming
Grand Junction: Family Fun Night at Bananas Fun Park May 23, 5 pm
Ft. Collins: Support Partners Only Series: Conquering Fears, May 6, 6-7:30 pm Greeley: Interventions that Work with Dr. Samuel Laney MD, May 7, 6-7:30 pm, Dinner program Laramie: Interventions that Work with Dr. Samuel Laney MD, May 8, 6:30-8 pm, Dessert program Longmont: Managing MS through Rehabilitation – Center for Neurorehabilitation Services panel June Date TBA
4
Grand Junction: A Matter of Balance – Falls Prevention Program April 23, 10 am
Montrose: Family Picnic, Early May, Date TBA Durango: Empower Yourself with Physical Exercise June 6, 12 pm Cortez: Empower Yourself with Physical Exercise June 6, Evening
Regional Teleconferences Sleep Management June 6, 7:30 – 8:30 pm, MST Intimacy and Family Planning August 1, 7:30 – 8:30 pm, MST
For details or to register go to cureMSco-wy.org or call 800-344-4867 option 1
World MS Day May 29, 2013 MS connection: Spring 2013
PROGRAMS
Beat The Heat This Summer! 1 Drink plenty of fluids. Cool water is the best choice.
COOL IT! PROGRAM When the weather gets hot, people with MS can experience a temporary worsening of their symptoms. A fever, sunbathing, hot showers and baths or overheating due to exercise can also aggravate MS symptoms like increased fatigue, weakness, and visual problems. Here are some tips to help you COOL IT this summer:
>>
2 Stay in an air-conditioned 3
7 Try pre-cooling yourself before
exercising—get into a lukewarm bath and add cooler water for 2030 minutes.
environment when it’s very hot or humid.
8 Cool baths and showers are also
Use cooling garments such as vests, headbands and neckbands when outside or exercising or try exercising inside where it’s cool.
9 Wide-brimmed hats and light-
4 A simple damp cloth or towel is a great alternative if you don’t own a cooling product.
5 Consult your doctor before you
start any exercise program or have questions about your existing regimen.
6 Beat the heat by exercising in water at 80-84 degrees.
a great way to reduce core body temperature. colored, loose clothing can also help.
10 Know your own limits and don’t overdo it, especially when you’re outside in the heat. 11 Heat generally produces only a temporary worsening of symptoms and does not cause more disease activity, demyelination or damage to the nerves themselves. Symptoms generally reverse rapidly when the temperature lowers.
The Chapter’s COOL IT program helps people living with MS control the temperature in their environment in order to better manage their symptoms. Our financial assistance program helps clients purchase items such as air conditioning units, car air conditioners, fans and a variety of cooling products. This program also helps with the costs of repairs to heating and cooling units. n Visit: cureMSco-wy.org for more information on heat sensitivity and symptom management
Contact the Information Resource Center at 1-800-344-4867 (option 1) for information on referrals, resources and financial assistance.
National Multiple Sclerosis Society
MSconnection.org CureMSco-wy.org 1-800-FIGHT MS (344-4867)
5
VOLUNTEER
Be the Change
2013 Northern Colorado Dinner of Champions
>>
Chapter supporters gathered at the Fort Collins Hilton on March 8 for the Chapter’s 19th Annual Northern Colorado Dinner of Champions. Themed “Be the change you wish to see in the world,” nearly 400 attendees were inspired by highlights of the advancements made against MS from the Society’s founding in 1946 to the present and recognition of the 2013 honorees. A $10,000 challenge grant from the Toney Family Foundation was leveraged to more than $40,000; in all the event raised more than $100,000. Connie Hanrahan, owner of the Fort Collinsbased Mantooth Marketing Company, was honored with the Chapter’s prestigious 2013 Hope Award in recognition of her exceptional contributions to philanthropy and
Engage in 2013
Make this Your
Year to Give Back Gifts of time and talent given by community volunteers across Colorado and Wyoming make a significant impact. Every hour a volunteer donates allows the Chapter to direct more resources to programs, direct services and support for promising research. The Chapter offers interesting, fun and meaningful opportunities for everyone. Individuals Enjoy an office atmosphere? Use your organizational skills to help with administrative projects and event mailings. Colorado’s great outdoors more to your liking? Popular event positions range from food and beverage support and team village set-up to finish line
cheer crew. These important positions keep our signature events fun, safe and successful. Higher-level volunteers—such as Bike MS Rest Stop Site Captains—are also needed to drive rest stop trucks, manage food and water inventory and co-manage volunteers. Groups and Organizations Did you know it takes nearly 500 volunteers to support Bike MS? To help meet this demand, the Chapter welcomes organizational groups and corporate stewardship teams. Belong to a nonprofit? Let’s work together.
National Volunteer Week
April 21 – 27, 2013
6
>>
Lend us volunteers for Bike MS and the Chapter may provide a charitable donation to your organization. For more information on our nonprofit partnerships, call Amanda Douglass, Community Engagement Manager at 303-698-5443. There is a place for every skill and schedule. Join in and experience the joy of helping others, make new friends, receive a custom T-shirt and refreshments, and more! n
Thank you volunteers! In 2012 our 1,500 volunteers provided more than 26,000 hours of service! MS connection: Spring 2013
u volunteerism. She has provided mentoring, empowerment and opportunity to young women in Northern Colorado for more than 25 years and is a longtime supporter of the Chapter, CSU Athletics and other nonprofit organizations. Loveland resident Pam Carlson received the Chapter’s 2013 MS Champion Award, which is presented to a person living with MS who has elevated the local MS community through support of the Chapter and others living with MS. Diagnosed with MS in 2002, Carlson donates numerous volunteer hours to raising awareness and funds for the Society, captains a Walk MS team and has been a top Northern Colorado fundraiser for the past seven years.
within the Northern Colorado community whose dedication and support are a source of ongoing inspiration,” said Carrie Nolan, Chapter president. “This is a wonderful evening every year and we thank all of our supporters whose energy and commitment maintains the momentum that will lead us to our goal of a world free of MS.”n
v
“We are very pleased to honor Connie and Pam, who have joined the ranks of leaders
u MS Champions: Pam Carlson (2013), Phil Yastrow (2012) v Hope Award Recipients: Steve Nichols (2012), Connie Hanrahan (2013), Dennis Houska (2011)
DIY FUNDRAISING
Do It Yourself Fundraising Chapter supporters around the country have already created over 300 DIY fundraisers raising over $451,000 this year. You can do it too! Have a garage sale or simply ask your friends and family to Join the Movement®.
Steps to DIY Success 1. Decide on an event or idea – the sky is the limit! 2. Visit DIYco-wy.org to get started
DIY Examples1.
• Office Jeans Day • Chili Cook off • Wine Tasting • Bake Sale • Dodgeball Tournament • Poker Night • Silent Auction • Pub Crawl
3. Create your online fundraising page! Set a goal, share your story and include information about your fundraiser 4. Use our online toolkit containing step-by-step instructions and digital downloads 5. Invite friends and family to participate by emailing your personal fundraising page
CureMSco-wy.org 1-800-FIGHT MS (344-4867)
303-698-5443 doityourself@nmss.org
7
RESEARCH EVENTS
Walk MS 2013: Our 25th Year! Friends, families and peers have gathered to participate in Walk MS for 25 years with one destination in mind—a world free of MS. Since the Society launched Walk MS in 1988, more than $770 million has been raised to support life changing-programs and cutting-edge research. Over the span of 25 years, Walk MS Denver has grown to more than 9,000 participants. In 2012 the event raised more than $1 million for the first time! Over time the Chapter added Walk MS events throughout Colorado and Wyoming ; 12 are scheduled this year with a goal of raising $1.8 million across all Walk MS events.
Register Today
Every step taken during Walk MS has contributed to the extensive advances that have taken place in research and given hope to everyone affected by MS. Register for this year’s Walk MS and continue the momentum!
walkmsco-wy.org Walk MS Event Dates APRIL 6 Laramie 13 Cheyenne 20 Casper 20 Gillette 27 Rock Springs
MAY 4 Denver 4 Grand Junction 11 Pueblo 11 Northern Colorado 18 Colorado Springs 18 Glenwood Springs
JUNE 8
Cody
September 21
Boulder County
Walk Event Sponsors Presenting Sponsor
TEENAGE MS HERO
Why We Walk Ashlyn Snell was 13 years old when she noticed an unusual ringing in one of her ears. Instead of going away, symptoms persisted and she began to experience balance issues and nausea. After going through a battery of tests, including an MRI and a spinal tap, Ashlyn, now just 14, was diagnosed with MS. Thanks to a positive attitude, Ashlyn doesn’t let MS get in her way or slow her down. She’s an active teen attending Bear Creek High School and is involved with her church youth group; these friends support her every step of the way. Although she doesn’t like the daily shots now needed, she never skips them because she knows how important they are to her health now and in the future —a future that holds aspirations of a career in politics or medicine. “As a parent you do everything you can to protect and care for your children,” said Carin Snell. “Yet when Ashlyn was
diagnosed with MS, it was truly the first time I experienced not being able to do anything to make it all better. As a mother, I felt completely helpless," Carin continued. “My husband and I immediately started following research efforts and after learning that funds raised by Walk MS help to support promising research, we started Walk MS Team Ashlyn. We look forward to walking for a brighter future for Ashlyn and everyone diagnosed with MS. Perhaps best of all, I no longer feel powerless.”n Special Thanks To:
Official Vehicle of Walk MS
Our presenting sponsor for Wyoming's 2013 Walk MS and Bike MS
8
MS connection: Spring 2013
EVENTS
Register Today bikeMScolorado.org bikeMSwyoming.org
Don’t just ride, Bike Event Sponsors
Bike MS 2013 Bike MS is a two-day inspirational ride covering 150 miles through rolling hills and captivating scenery. The sense of accomplishment you feel as you cross the finish line can only be matched by the difference you make in the lives affected by MS.
®
June 29-30
Colorado 2-Day
June 29
Fort Collins Loop
August 17-18
Wyoming
Hike MS 2013 Change your altitude about MS. Hike MS takes fun and fundraising to new heights as you enjoy beautiful mountain scenery while making great strides towards a world free of MS. Hike routes are designed for all skill levels—so gather friends and family to explore new territory.
July 27, 2013: Copper Mountain Resort
MuckFest MS 2013 MuckFest MS Colorado is an unforgettable challenge course through miles of water, mud and muck that will test your mettle with physical fitness, teamwork and, of course, FUN! It is an inspiring experience whether you participate, volunteer or watch! Follow MuckFest MS Colorado on Facebook.
September 21, 2013: Denver CureMSco-wy.org 1-800-FIGHT MS (344-4867)
9
RESEARCH
The Society Grants $1 Million to Fund Two More ColoradoBased MS Research Projects The National MS Society recently announced more than $1 million in funding for two Colorado-based MS research projects. The funding of these investigations brings the total to eight multi-year research endeavors funded by the Society in Colorado. Jeff Hebert, PT, Ph.D., assistant professor in the Departments of Physical Medicine, Rehabilitation and Neurology at the University of Colorado Denver–Anschutz Medical Campus, is an expert in evaluating, treating and investigating fatigue, mobility, postural control and the effects of exercise in people living with MS. He received $536,295 from the Society to research the potential of balance and eye movement training for improving mobility in people with MS, as well as whether improvement in balance control can reduce the fatigue that many people with MS experience. Linda Watkins, Ph.D., is a distinguished professor in the Department of Psychology and Neuroscience and director of the Interdepartmental Neuroscience PhD Program at the University of Colorado, Boulder. The Society awarded Dr. Watkins a $555,077 grant to investigate a new delivery method of an immune system molecule that could slow or stop MS attacks.
Visit nationalMScociety.org/research for more information.
2012–A Year of Sweeping Advances Last year the Society invested $44 million to support 325 research projects worldwide. Highlights include: • FDA approval of Aubagio, the second oral therapy for relapsing forms of MS
• The completion of the first human trial of an experimental therapy targeting myelin repair
• The launch of the International Progressive MS Collaborative, the largest effort to date to speed research to stop progressive forms of MS
• Progress in restoring functions using innovative rehabilitation techniques, including memory enhancement involving stories and imagery to solidify learning, and improving balance and mobility with specific exercises
• The discovery of what could be a target of the immune attack in people with MS which may lead to a new understanding of the disease and new treatment strategies
• Advances in uncovering MS triggering factors, bringing researchers closer to finding ways to prevent the disease
“This has been an extraordinary year in advancing MS research and treatment,” said Carrie Nolan, Chapter president. “The 2012 research achievements convey the dramatic advances that are occurring in treating and understanding MS. In less than two decades, MS has gone from an untreatable disease to one with nine therapies for relapsing MS, the most common form of the disease, with another half dozen in late stage development or already before the FDA for approval,” Nolan emphasized. n
10
MS connection: Spring 2013
OF NOTE Sam’s Club raises $2 million Local Sam’s Club employees and volunteers across Colorado and Wyoming raised more than $45,000 during a six-week fundraising campaign in February and March for the Chapter. Nationally this campaign raised $2 million for people with and affected by MS.
Cheyenne, Wyoming Mudd Volleyball
TOYOTA Official Vehicle of
Walk MS and Bike MS
Toyota has come on board as the official vehicle of the Chapter. Look for the Chapter Toyota Sienna at our events this year. This ada ptable minivan is on loan to the Chapter this year from our friends at Toyota.
u
Teams Butt Buster, Bunion Bunch, GigaBikes and al Megasorasses joined forces again to host the annu This MS. y” Mudd Volleyball tournament to “Cast Awa years. tournament has raised over $35,000 in the last five
MS Awareness Week 2013
The Colorado-Wyoming Chapter celebrated MS Awareness Week 2013 by creating stronger connections, promoting activism, sharing information with the community and making big moves!
v
u MS Day at the Colorado State Capitol: Whit Conant (Board Member), Carrie Nolan (Chapter President), Sen. Linda Newell, and Lisha Gallegos (MS Activist) pose for a photo on the Senate floor. v MS Awareness Week Harlem Shake Video: Watch our supporters dance like they want to end MS forever. Check out our Facebook page and YouTube Channel.
Golden Circle Members The Chapter would like to thank the following members of the Golden Circle Club for supporting vital MS programs, services and research through generous donations made from October 2012 to January 2013. N AT I O N A L M S S O C I E T Y
John and Carolyn Bliley Alan Catlin Phillip and Marje Clark Richard and Marsha Cole Elfriede and Gary Cooper Travis Cooper Dr. Carl and Ondine Craig Glenn and Cecilia Curtis Dr. Robert and Lenore Damrauer Gerald Dancy Jenna Daurio Candace Dejong James and Andrea Eckroth Alan and Linda Englander Kevin and Susan Fink
Anne Foster Paula and Stan Galloway Sherri and David Giger Peggy Goldman Rob and Melissa Hartnett Sarah and Eric Hilty Ralph Holden Michael and Twila Jenkins Mike and Elizabeth King Judy and Donald Leidy Dr. Stuart and Arlene Lerman Dr. Ford Lux Leonard and Sylvia Marx Angela and David McKee Mary Milgrom
Travis Mitchell Frank and Sandra Monteiro Roger and Elaine Morin Ann Myers Williams and Bob Williams Brad and Tamara Rauer Dr. Dick and Jane Raymond Edith Russell Nedra San Filippo Ann Sandquist Raymond Satter Thom and Joani Schultz Gary and Teresa Stewart Robert and Celia Stretmater James Veldkamp
Joseph and Linda Vumbaco Dave and Susie Wehrfritz Suellen and Travis White Margaret York George T Sanders Company Marcia Gold Naiman Fund The Blackstone Charitable Foundation The Melrene Fund The Rosemary & David Olsen Foundation TWC Foundation Inc Wet Paint Communications, LLC Wilson Family Foundation
*Golden Circle members give an outright gift of $1,000 or more.
CureMSco-wy.org 1-800-FIGHT MS (344-4867)
11
Broadway Station 900 S. Broadway, Ste. 250 Denver, CO 80209
Stay Connected MSCONNECTION.ORG
cureMSco-wy.org
1-800-Fight-MS (344-4867)
Let's MOVE together! The NMSS Colorado-Wyoming Chapter now has a joint Facebook page. Our separate Colorado and Wyoming pages will be closing soon. We know you are a supporter of our efforts and we want to stay connected with you.
Go to facebook.com/NMSSco.wy and Like us today!