MS Connection Newsletter
MOVE IT A
M e e t i n g 1 0 . 2 0 . 2 0 1 2
INSIDE THIS ISSUE:
2012 Events Recap
Fall Health and Wellness
New Research Grant
Independent Spirit Fund Independence for People living with MS
Letter from the president
Dear Friends, The Chapter’s signature outdoor events are a critical part of our annual fundraising efforts and impact how much we are able to invest in research and our ability to offer a wide range of services that benefit people affected by MS throughout Colorado and Wyoming. This year, unprecedented wildfires along Colorado’s Front Range presented many challenges for one of our top fundraising efforts – Bike MS Colorado. High temperatures, uncertain air quality and route changes did not deter the resolute commitment of our participants. Thanks to our dedicated cyclists and the exceptional efforts of our staff and volunteers, who adapted to continually changing circumstances, we were able to raise more than $3.5 million, exceeding our goal for 2012. During this period of great loss and uncertainty, time and time again those directly affected exhibited that people - not things - are at the heart of what matters most. In the spirit of the approaching the holiday season, I ask that you consider making a gift honoring someone you care for or a donation to the Chapter in lieu of a traditional present this year. Gifts that help others are meaningful and rewarding; they never break, wear out or are discarded. I want to thank our board chair Brandt Wilkins and top fundraiser David Alexander for creating the new Independent Spirit Fund. Brandt and David recognized a need and acted on it by making a gift to establish this fund, which will specifically help people living with MS remain independent. They have challenged the Chapter to raise an additional $100,000, which presents another wonderful giving opportunity. As we approach the end of another year, it is always a time for reflection. I am honored to represent this outstanding organization. Each and every day I am connected to donors, sponsors, researchers, staff members and volunteers who are all part of a strong community driving progress that leads us closer to our united goal of a world free of MS. And for that, I am thankful.
Carrie H. Nolan Chapter President
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 Mary Hobson, Immediate Past Chair Kathryn Spritzer, Secretary Rob Hartnett, Treasurer Carl Berglind Whit Conant Elizabeth Brandon Coors John Corboy, MD David Cordova Claudia Curry Hill Chris Doerr Jeff Higgins Craig Lopez Frank Monteiro Kyle Ocasek Susan Pollard Richard Raymond, MD Randy Schapiro, MD Michele Vaughan Travis White Jo Wilson Emeritus Trustees George Garmany, MD Ralph Holden David Lord Janet Savage ©2012 National Multiple Sclerosis Society, Colorado-Wyoming Chapter
MS connection: Fall 2012
PROGRAMS & SERVICES
MOV E IT Annual Meeting
Inspires and Motivates Get motivated for 2013 at this year’s annual meeting on Saturday, Oct. 20 at one of five locations across Colorado and Wyoming. National speakers will discuss topics such as self-motivation, MS management, resilience, humor, and cutting edge research. The annual meeting and “Move It” program will bring together people living with MS, family members, friends, healthcare professionals, volunteers, staff, fundraisers, board members and community partners to celebrate the Chapter’s accomplishments and those who have helped make them possible, while also providing invaluable education to those living with and affected by MS.
Annual Meeting 2012
1 0 . 2 0 . 2 0 1 2 Schedule of Events
M o v e
Oc t o b e r 2 0 , 2 0 1 2 ,1 0 a . m . - 1 p. m . Registration & Exhibits Brunch Annual Report & Treasurer’s Report 11:30 a.m. - 12P.M. Awards Program Keynote Speakers 12 - 1p.m. 10 - 10:30 a.m. 10:30 - 11 a.m. 11 - 11:30 a.m.
Colorado Springs, Antlers Hilton Diane Sieg: Take Care of Yourself, Take Charge of Your Life, and Take Action Daily
Westminster, Double Tree Hotel
Attendees of the annual meeting will be able to meet with representatives from the local offices, talk to various community vendors and connect with others affected by MS in the community. Each program location will be electronically linked for the Annual Meeting Report and Chapter Volunteer Awards Recognition.
Dr. Robert L. Karol: Appreciating Grief and Loss after MS Diagnosis
Whatever your role in the movement to create a world free of MS, we’re all in it together. The Chapter is working with you to “Move It” forward. To register visit curemsco-wy.org or call 1-800-344-4867 option 1.
Dr. Brad Nieder: Laughter is the Best Medicine
Grand Junction, Double Tree Hotel Dr. Randy Schapiro: Symptoms, Treatments, Research: MS Now
Lovela nd, McKee Conferen c e a n d W ellness Center C h e y e n n e , L i t t l e Am e r i c a H ot e l Dr. David Rintell: Finding Resilience
IN S PIRATION CureMSco-wy.org 1-800-FIGHT MS (344-4867)
Charitable Gift Annuities Benefit Donors and the Society
Why Wait?!” ”Charitable Gift Annuities
Thinking about a Charitable Gift Annuity? Consider these questions:
Allow You to Give and Receive
Chapter supporters Howard and Dorothy Berger find gratification in giving and have made it a point Howard & to help others Dorothy throughout Berger their lives. After a niece was diagnosed with MS in 2001, they decided to establish a charitable gift annuity with the Society. “We found that a charitable gift annuity not only gives us the opportunity to help worthwhile organizations, it also provides us with a steady income at an exceptionally high interest rate for the rest of our lives,”
Would you like to receive a steady stream of income over your lifetime?
said Howard. In fact, the Bergers found this giving option so beneficial that they established a second charitable gift annuity with the Society this year and plan to add another every six months. Howard enjoys investing and sharing financial advice he has learned firsthand from experience and believes a charitable gift annuity is an ideal way to give and receive. “We know now that our gift will help the Society continue its invaluable work and research efforts, which will benefit our niece and thousands of others affected by MS. At the same time it gives us peace of mind and security in these unpredictable economic times,” he added. “So why wait!” Berger exclaimed.
Would you like to provide lifetime income for someone else, such as your spouse? Would you like to provide financial support to the National MS Society for years to come? Are you in a financial position to irrevocably exchange cash, securities or other property for a stream of lifetime income? Are you interested in minimizing federal estate tax exposure? Would you like a charitable income tax deduction this year?
If you answered yes to any of these questions a charitable gift annuity might be a good option for you. Contact Carrie Nolan for more about charitable gift annuities and the National MS Society PH: 303-698-7410 E-mail: firstname.lastname@example.org
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 May 2012 to July 2012. N AT I O N A L M S S O C I E T Y
Jami Acker Roger Ackerman Melvin Alsum Jack Ayan Mark Barmak Raymond Barton Alexander Berger John Biggers Harold and La Verne Blecha Gregory Borchert Erik Caldwell April Carlton Scott Chaney Ben Chestnut Myron and Joanne Clayton Frank Cohen Kenneth Cohen Elizabeth Coors David Corkins Nancy Curtin Charles Dedmon David Denman Glenn Dighero
Chris and Mary Doerr Barb and Ed Dowski Susan and James Duncan Shawna and Dave Edwards Mike Elings Ray Elliott Randy Engel Kristin Froehlich Jim Fuqua Darlene Gilson Sharon Gonzales Douglas Guion Gabriel Hammond Jack Hannum Dede Harrington Gerald Hohenstein and Beth Spellicy Walter Imhoff Bryan Johnston Edward and Diane Keely Stephen and Kim Keen Heather Kendrick Andrea and Michael Kennedy
Scott Kerr Mike and Elizabeth King Gail and Steve Kloppel David and Bridget Kornder Jack Landon Dr. Jose Lares Stephen and Stephanie Largan Dale Larsen Darren Larsen Susan and Stephen Lehman Chari and Michael Leleck Hannah and Brian Long Ray Lyon Thomas Major Mark Mashburn Laurel Mauch Carol McGovern Stephen McGuar Sasan Mehrara Charles and Carol Miller Ellen Miller Matthew Miller Chad Mitchiner
*Golden Circle members give an outright gift of $1,000 or more.
Russel and Kelley Morgan Janet and Dean Mueller Charles Nail, Jr Dr. Roger Nishimura Duncan and Jennifer O’Brien Beverly and Ronald Ocasek Robert Overton Bob Peterson Qian Qiao Michael Rothschild Paul Rumler Michael and Jennifer Sachs Jennifer Sales and Greg Lyon Kristin and Jason Sanchez Dale Sand Matthew and Kimberly Sands Conrad Schaefer Gail Schneck Tim Schulz Mark Schwarz Carolyn Shogrin Ty Snow Minyoung Sohn
Linda Springstead Jan and Bob Steiert Lynette and Bradley Steininger Coy and Catherine Stewart James Strouse Steve Swanson David Taylor Frank and Anne Teneralli Rick Trevino Bill and Sarah Trimarco Lana Volftsun Barry and Verlyn Wiederholt Linda Willetto Dan Williams Misty Winkler Kevin Yoder
David & Cynthia Cyganiak-Potts Family Foundation
FOUNDATIONS / CORPORATIONS
The Rifkin Foundation The Silk Family Foundation
Borzi Family Foundation California Community Foundation
DeRoy Testamentary Foundation Estate of Eva Feld Frances W Burton Foundation Mandelbaum Family Charitable Foundation National Philanthropic Trust - Jon & Mindy Gray Foundation PUJA Memorial Fund The Gupta Family Foundation The Phyllis M Coors Foundation
Charles Schwab Foundation
MS connection: Fall 2012
Independent Spirit Fund
When someone is diagnosed with MS, many Independence for People living with MS questions immediately surface regarding what is ahead. Although there are now medications available to slow the progression of MS and advancements in research continue to show promise, there are still uncertainties, especially about the loss of mobility and independence. Now, thanks to patrons Brandt Wilkins and David Alexander, there is a new way to help people living with MS retain their independence through the Independent Spirit Fund. These generous donors established this fund to ensure that there are adequate resources available to provide access to vital services, equipment, modifications and technology, all of which help people remain independent. “We want to give folks the ability to maintain their superiority over this infuriating disease by keeping their independence. MS may steal many things, but our underlying determination to defeat it is ours alone,” said Alexander. Wilkins and Alexander have provided a generous lead gift and have challenged the Chapter to raise an additional $100,000. Catch the spirit and help provide hope, opportunity and independence for people living with MS by making a gift today!
Did you Know? $250 provides voice recognition software to help individuals stay connected $500 funds an evaluation to support economic independence $1,000 finances medical equipment to maintain mobility $2,500 leverages home or automobile modifications to maintain accessibility and independence
TO DONATE: send your gift To: Independent Spirit Fund Colorado-Wyoming Chapter, National MS Society 900 S. Broadway, Suite 250 Denver, CO 80209
For More Information Contact Carrie Nolan at 303-698-7410
WORKPLACE GIVING DONATING TO RESEARCH AND PROGRAMS THROUGH PAYROLL DEDUCTIONS Contributing Author Hannah Rea
While there are several options for individuals who want to support the Chapter financially, workplace giving through payroll deductions is one of the easiest. Through workplace giving, a company allows employees to elect to give a portion of their paycheck to a charity of their choice through pretax payroll deductions. The United Way campaign used to be the most familiar workplace giving campaign; however, now there are many options such as Community Health Charities. The National MS Society is a member of Community Health Charities, a diverse collection of health related charities that focuses on giving in the workplace to support research, patient outreach and community CureMSco-wy.org 1-800-FIGHT MS (344-4867)
programs. Employers may also offer a matching gifts program, which allows employees to double their donations. The company, in essence, matches their original donation after the completion of a Matching Gifts form. If you or your company would like to get involved in a workplace giving campaign for the Society through the Community Health Charities, please visit healthcharities.org under the “Our Charities” tab or curemsco-wy.org under the “Donate” tab.
STRONG COMMUNITY SUPPORT C Walk MS, Bike MS, Hike MS and MuckRuckus MS 2012 EVENTS A BIG SUCCESS! Thank you to all the participants, sponsors, community supporters and volunteers who made the Chapterâ€™s 21 Walk, Bike, Hike and MuckRuckus MS events a huge success this year! Neither record high temperatures nor devastating Front Range wildfires deterred thousands throughout Colorado and Wyoming from walking, cycling, hiking or slipping and sliding to raise awareness of MS and vital funds to end MS forever.
Payne Jungelut, 8, enjoyed the face painting
Pistol Pete from UW keeps pace with some joggers at Walk Wyoming
Cassie Novak and son Owen walk for Lani Hayden
Mark and Karen Carrathers, Dr. Erika Suker and Matt Giordano of Team Slow Poke Kelly Stillman and Denise Sebrook from team Charge Play Music to End MS to End MS
Ed Greene from CBS 4 cheers on participants at the Start Line
Thank you to our 2012 Colorado WALK MS Sponsors!
MS connection: Fall 2012
CONTINUES MOMENTUM IN 2012!
Team Happy Heart led by co-captain Alexi Grewal, road cycling Olympic gold medalist 3rd from left
Sugar Bee Tim Harris, nine-time rider, completed Bike MS on a recumbent bike
NOW Team Alison Powers and Lori Gonzales-Phillips set out
The Snow Cone booth was a popular site following the ride
Kerri O’Malley and Judy Fitzgerald of team Milin 4 Myelin celebrate a great ride
Thank you to our 2012 Colorado Bike MS Sponsors!
CureMSco-wy.org 1-800-FIGHT MS (344-4867)
Over 1,000 brave Muddy wipeout obstacles at MuckRuckus
Thank You Mad Greens For Your Generous Support!
July 28 was a beautiful day for a hikE at copper Mountain
2012 HIGHLIGHTS Wells Fargo Walk MS, presented by MS Lifelines in Denver, surpassed $1 million in fundraising for the first time in Chapter history Wyoming Walk MS raised more than $200,000 A record 16,000+ participated in 15 Walk MS events in Colorado and Wyoming Newmont Bike MS, presented by Great-West Life, raised more than the $3.5 million mark and capped out maximum participation for the fifth year in a row A record number of cyclists – 300 – registered in Bike MS Close Encounters More than 1,000 people braved muddy wipeout obstacles at MuckRuckus MS, presented by MAD Greens, raising more than $250,000 Hikers once again enjoyed Colorado’s high country during Hike MS Copper Mountain *This issue covers events through August 5, 2012
MS connection: Fall 2012
LIVING WITH MS
Help Us Help You Caregiver Program Series
No Time like the Present! Create a Year-long Wellness Plan As the cool autumn days begin to bring relief from the staggering heat of this past summer, you may find yourself wanting to be active again. But where should you start and how? A beneficial first step is to create a personal wellness plan. Wellness encompasses the many ways that you can nurture your mind, body and spirit, and it’s more than just being active. A well-balanced wellness plan includes regular health check-ups, participation in therapeutic groups and social activities, and healthy eating as well as engaging in mental and physical activity. Wellness also encompasses consciously slowing down, practicing relaxation and nurturing the soul. Creating a wellness plan begins with determining what you want to achieve. Once you have decided, you can make an action plan, which is an effective tool to help you implement your decisions. The two basic tenants of an action plan are identifying actions and activities that are reasonable and behavior specific. For example, losing weight is not a behavior, but not eating that second piece of pie at Thanksgiving dinner is. Also, choose activities that build confidence. An action plan also addresses the following questions: What are you going to do? How much will you do? When will you do it? How often will you do it? Amazing changes can occur when you identify what you want to do and put it in writing. Wellness year round is important, but fall is a great time to start thinking about the year ahead and begin to develop new habits and make positive decisions about your health. Familiarize yourself with your insurance coverage, as the Affordable Care Act has made available many free preventative benefits and services. Remember to discuss any major changes you are considering with your doctor. For educational materials on health and wellness, visit the National MS Society website at nmss.org or call 1-800344-4867 for referrals or additional resources. For local wellness opportunities, visit cureMSco-wy.org.
CureMSco-wy.org 1-800-FIGHT MS (344-4867)
Although MS impacts those who are diagnosed with the disease, we know it also impacts the lives of families and friends. We believe that paying attention to your own health and well-being is essential to being able to care for someone else. Chapter programs provide a safe and comfortable setting for learning about the disease while offering the best practices for the caregiver. JOIN US for the last two sessions of our Caregiver Program Series this fall.
is the Meaning of Illness, Disability 1. What and Aging?: Our understanding and
interpretation of illness, disability and aging informs and influences our experiences. Join us to explore how your foundational beliefs serve to bring life into focus when other coping methods have failed.
WHERE: Villas at the Atrium, 3350 30th St., Boulder, CO 80304
WHEN:Thurs., Oct.4, 2012, 6 p.m. – 8 p.m.
The Courage to Mourn: Human beings 2.attach to people, things, ideas, titles, money
and dreams so we are constantly at risk of experiencing loss and grief. Recognize the need to mourn different losses in our lives and move forward through and beyond the grief at this informative session.
WHERE: Bethany Lutheran Church,
Fellowship Hall, 4500 W. Hampden Ave.Cherry Hills Village, CO 80113
WHEN:Tues., Nov. 13, 2012, 6 p.m. – 8 p.m. Dinner will be served RSVP: cureMSco-wy.org
under programs and servicesonline calendar at a glance
Don’t Forget! Oct. 15 – Dec. 6th is Medicare Part D Open Enrollment! Choose the best plan for your needs: review your your prescriptions, and compare plans!
For Help contact your local SHIP office: CO: 1-888-696-7213 OR healthinsurance.colorado.gov WY: 1-800-856-4398 OR wyomingseniors.com
National MS Society Funding
Sixth Colorado-Based MS Research Project
Wendy Macklin, Ph.D., professor and chair of the Department of Cell and Developmental Biology at the University of Colorado School of Medicine, received a $587,653 grant from the National MS Society. This will be the sixth project the Society is currently funding in Colorado. The grant will support Dr. Macklin’s research on nerve repair, which targets restoring function lost by people due to nervous system damage caused by multiple sclerosis. Macklin’s grant was part of $18.4 million in new research funding, which is a reflection of the Society’s comprehensive strategy to stop MS, restore function that has been lost, and end the disease. The Society is investing more than $43 million in 2012 to support cutting-edge research projects globally. Macklin’s grant will fund research regarding restoration of nerve signaling pathways by determining how proteins and hormones outside a cell communicate to genes in the cell nucleus to trigger the creation of myelin, resulting in repair of the damaged communication line. “This grant will allow me to continue my research in a critical area and I thank the Society for their unwavering commitment to research funding.
I have received several grants from the Society throughout my career,” Macklin continued. “Over the years, the National MS Society has been integral in ensuring funding continues to be available to support MS research efforts, even in times when other funders cut back. The Society is also a wonderful resource for helping junior researchers obtain their first funding, which brings new people into the field and expands the MS research community,” Macklin added. “The National MS Society’s research program constantly strives to stop the disease, restore function lost to MS and end MS forever,” said Carrie Nolan, Chapter president. “The Society has launched a comprehensive research campaign - No Opportunity Wasted (NOW), which will dramatically increase its research investment from more than $185 million between 2006 and 2010 to $250 million by 2015,” Nolan emphasized. In addition to new approaches in promoting nervous system repair, new projects funded include explorations of what causes people with MS to experience pain; a DNA bank to aid researchers investigating the genes that make people susceptible to MS; and fellowships to train promising young doctors and scientists in MS research and clinical care. “This is a time of great promise for people with MS, with more therapies available than ever before, and many other novel strategies being explored for MS, including progressive forms of this disease. We are grateful to Dr. Macklin and all the scientists whose work is moving us closer to ending MS,” Nolan added.
Meet MS Scientist
Wendy Macklin, PhD Dr. Wendy Macklin was drawn to MS research early in her impressive career and her current research could provide new clues for stimulating nervous system repair in people with MS. She holds a bachelor’s degree in biological science from Stanford University, a master’s degree in microbiology from Yale University, and a Doctorate in Biological Science from Stanford University. She was a research fellow at the E.K. Shriver Center for Mental Retardation, Massachusetts General Hospital, and Harvard School of Medicine. She held assistant, associate and full professorships at the Louisiana State University Medical School, University of California at Los Angeles, Case Western Reserve University and Cleveland Clinic Lerner College of Medicine, before moving to the University of Colorado in 2009. Macklin is past president of the American Society for Neurochemistry and has served on several NIH study sections and review panels. She is currently on the National MS Society’s Research Programs Advisory Committee. The Chapter thanks Dr. Macklin and others devoted to MS research for their dedication and vital work to stop, reverse and end MS forever.
More on MS research at cureMSco-wy.org 10
MS connection: Fall 2012
Frank Monteiro and Travis White
New Board Members
Frank Monteiro, senior vice president and chief financial officer, MacDermid, Inc., and Travis White, Ph.D., retired software executive, have been named to the board of trustees of the Colorado-Wyoming Chapter, National MS Society.
Frank Monteiro senior vice president and chief financial officer of MacDermid, Inc.
travis white, PhD, retired software executive
Monteiro has worked at MacDermid Inc., a leading global provider of high valueadded specialty chemicals and technical services, since 1998. He holds a Bachelor of Science in Accountancy from Bentley University and serves on several other charitable boards, including the Vail Snow Sports Foundation, Highlands Sports Association and United Way of Greater Waterbury, Conn.
Denver Post Charities awards Chapter
$50,000 Grant Denver Post Charities, a McCormick Foundation Fund, awarded the Chapter a $50,000 grant to support care management programs, which help people living with MS access the health system, resources and services to maintain independence and quality of life. The Chapter was one of 65 charities awarded a grant through the Season to Share campaign, which raises funds through reader, community and corporate donations. Each dollar donated is matched at 50 cents by the McCormick Foundation.
Dr. White made a career in the software industry and worked for a number of leading companies, including J.D. Edwards in the Denver area. More recently, he founded Travis White Communications, a boutique consulting firm that helps businesses communicate more effectively. He is also an Adjunct Professor at University College, University of Denver, where he teaches master’s level courses in marketing and IT management. Travis is an expert in software marketing and has led broad re-branding efforts for several public companies. White received a Master’s and Doctorate in Information Science and Education from the University of Denver. He serves on the board of the Beanstalk Foundation. In 2011, he bicycled more than 3,700 miles across the northern U.S., raising $31,000 for the National MS Society.
Congratulations! 2012 Scholarship Recipients! The Colorado-Wyoming Chapter of the National MS Society awarded six, $1,000 scholarships to Colorado high school students: Lexi Chavez, Delores Huerta Preparatory High, Pueblo; Shaley Dehner, Roosevelt High School, Johnstown; Camille Libouban, New Vista High School, Boulder; Jade Peterson, Saint Mary’s Academy, Englewood; Zachery Romero, Brighton Heritage Academy, Brighton; and Jana Walker, East High School, Denver. The Chapter scholars were among 646 recipients nationwide who received scholarships totaling more than $1 million.
CureMSco-wy.org 1-800-FIGHT MS (344-4867)
Broadway Station 900 S. Broadway, Ste. 250 Denver, CO 80209
new online community
MSconnection.org What if everyone who cared about MS could join together in one place? Maybe, by connecting all of our knowledge, hope and experience, we can gain a new understanding of how to move forward. To help facilitate these connections within the MS community, the National MS Society launched a new, secure online community - MS Connection. MS Connection online allows you to find, store and share meaningful updates, posts, videos, articles and other content about MS and the topics you care about most. Ask questions, connect with people and groups, participate in discussions, view top stories, find an online peer and easily access educational webcasts and podcasts – all through the MS Connection community.
Join the conversation at msconnection.org Other Ways to Connect with us online: Watch Us: NMSSColoradoWyoming
Like Us: facebook.com/ NMSSColoradoChapter
A father in Minnesota shares how he’s feeling.
It stops a woman in Oregon, who’s lost her job and her boyfriend, from wanting to give up.