Connection Moving Toward a World Free of MS
Moving Toward a World Free of MS FALL/WINTER 2010
IN THIS ISSUE: Team Sugar Bee Has a
Million Dollar Buzz Inside MS Connection:
Research page 4
Advocacy page 7
• cureMSco-wy.org page1-800 8 FIGHT MS (344-4867) page 10
A Message from the President As the National MS Society looks forward to better position the organization to fulfill its vision to create a world free of MS, the words of the French classical author François de la Rochefoucauld ring true, “The only thing constant in life is change.” Effective October 1, 2010, Colorado and Wyoming have alignined their resources to form the Colorado-Wyoming Chapter. This decision was made in the best interests of people with MS and their families in each of these states, which have a combined total of approximately 11,000 individuals living with MS. These changes will help us accelerate innovation and best practices around the organization, reduce operational redundancies, enhance volunteer engagement, and align our efforts so we’re focused on the work that best serves people living with MS. By consolidating administrative functions and by combining the talents of our Boards of Trustees, staff, and volunteers, we can streamline operations, increase fundraising effectiveness, and expand programs, services, and advocacy for those affected by MS. It is also our goal to raise more money and increase our commitment to MS research. This transition will be a gradual one, with no interruption in operations.
Local services and fundraising will continue to be provided through offices and staff in Denver, Colorado Springs, Fort Collins, Grand Junction, Colorado, and Cheyenne, Wyoming. Each state will also continue to sponsor events that give residents the opportunity to support local programs and services along with research into MS treatments and a cure. The Board of Trustees will oversee direction and policy for both states. I welcome Brian Helling, who will join the Board of Trustees, representing Wyoming constituents. The combined strengths of Colorado and Wyoming will move us closer to the ultimate goal that we all share— whatever the name of our state or chapter—a world free of MS. More details about the new chapter will be shared with you in future issues. In the meantime, I welcome your thoughts and ideas to maximize our new partnership to achieve our unified vision.
MS Connection Fall/Winter 2010 issue is published by the National Multiple Sclerosis Society, Colorado-Wyoming Chapter.
Carrie H. Nolan Chapter President
New Colorado-Wyoming Website On October 1, 2010, Colorado and Wyoming aligned to create the new Colorado-Wyoming Chapter. With this alignment came the introduction of the Chapter’s newly updated and improved website. Anyone from Wyoming or Colorado can go to the website to find pertinent information on a wide range of topics relating to multiple sclerosis.
www.cureMSco-wy.org 2 MS Connection • Fall/Winter 2010
The purpose of the Chapter website is to offer a quality resource for all of the 88,000 people affected by MS in Colorado and Wyoming.
The new site offers access to information on all events held in Colorado and Wyoming, as well as information about programs and services, care management, and national news, research and information directly related to MS. Please visit our new website at www.cureMSco-wy.org to find all the latest information on MS, or to Join The Movement and support the cause!
Moving Toward a World Free of MS
New Board Members
Colorado-Wyoming Chapter, National MS Society Richard (Dick) Raymond, MD Dr. Dick Raymond is an executive consultant on public health and food safety for Eli Lilly/Elanco and also serves as an affiliate faculty member at Colorado State University department of Animal Sciences.
Brian Helling Brian Helling is a real estate investor and managing member of Tiny Town LLC, a real estate investment company that focuses on residential property management and selling property renovations.
Previously he served as the undersecretary for food safety with the U.S. Department of Agriculture.
Brian has been involved with the National MS Society for the past 10 years with Wyoming Walk MS and Bike MS teams.
Dick serves on the Board of Trustees of The International Life Sciences Institute.
He is currently a member of Wyoming’s Government Relations Committee.
Dick’s daughter was recently diagnosed with MS and now the family is actively involved.
Brian has a close friend with MS and he remains committed to finding a cure.
Kyle Ocasek Kyle Ocasek is a Senior Associate with Point B, a management consulting firm that specializes in strategic execution. Kyle has more than 15 years experience in business and technology-related projects and has worked in a variety of industries including health care, software, telecommunications and finance and retail. He is a graduate of the University of Miami, where he graduated magna cum laude with a bachelor of arts degree in business administration. Kyle’s wife was diagnosed eleven years ago with MS and they are committed to a world free of MS.
Investing in the Future
2010 Scholarship Award Winners The Colorado Chapter of the National MS Society awarded six $1,000 scholarships to the following Colorado high school students: Vincent Ryan Caricato, Springfield High School, Springfield; Gabriel McKenna Goodman, Greeley Central High School, Greeley; Leah Kristene Minnich, Falcon High School, Peyton; Christopher Shults, Rampart High School, Colorado Springs; Taylor Julianne Smith, Pueblo West Highs School, Pueblo; and Joshua Thomas Stanley, Horizon High School, Thornton. The Society’s scholarship program was established seven years ago to provide financial assistance to high school students living with or affected by multiple sclerosis who are pursuing a college or technical school education. The Colorado students were among 470 recipients nationwide who received scholarships totaling nearly $1 million this year.
The Society provides scholarships for people with MS or children who have a parent with MS. Applicants must be planning to attend an accredited post-secondary school for the first time and to take at least six credit hours per semester leading to a degree, license or certificate. Recipients are selected on the basis of financial need, academic performance, compelling personal or family circumstances, and an essay (written by the applicant) on the impact of MS on their life. Awards range from $1,000–$3,000 for one year; a small number of four-year awards are also offered. Applications are accepted between October 1, 2010 and January 14, 2011. To apply, visit www.nationalMSsociety.org/scholarship or call us at 1-800 FIGHT MS.
1-800 FIGHT MS (344-4867) • cureMSco-wy.org
New MS Treatment
FDA Approves First Oral Disease Modifying Therapy for Multiple Sclerosis (MS)
The U.S. Food and Drug Administration has approved fingolimod capsules, named Gilenya™, for reducing the frequency of clinical relapses and delaying the accumulation of physical disability in relapsing forms of MS, making it the first oral disease-modifying therapy for the treatment of multiple sclerosis. Gilenya (pronounced Jil-EN-ee-ah) will be available as a first-line treatment, which means that there are no recommendations in the approved labeling for people to try other MS therapies before taking Gilenya.
showing that fingolimod significantly reduced multiple sclerosis relapse rates and reduced disease activity as measured by MRI. In the one-year trial comparing fingolimod to interferon beta-1a (Avonex®, Biogen Idec), fingolimod was found to have a greater impact on relapse rates and on MRI. In the two-year trial, fingolimod delayed the progression of physical disability compared to placebo. (New England Journal of Medicine January 20, 2010.)
The most common adverse reactions listed in Gilenya’s prescribing In June 2010, the information are National MS Society “Gilenya is the first headache, flu, was among individuals diarrhea, back oral disease-modifying pain, liver enzyme and patient advocacy groups that provided elevations and therapy for the public testimony at an cough. The label FDA advisory committee carries warnings meeting about the unmet treatment of about other need for more therapies potentially serious multiple sclerosis” for people with MS. risks, including decreased heart rate and/or other heart About Gilenya: Gilenya is a new class effects after the first dose; the potential of therapy for treating multiple sclerosis. for increased risk of infections (in It binds to a docking site (sphingosineclinical trials, a small number of serious 1-phosphate receptor, or S1P receptor) herpes infections occurred, including on immune cells, including T cells and two deaths from herpes infections that B cells, which have been implicated occurred in people taking a dose higher in causing nervous system damage in than the approved dose of Gilenya); MS. The drug appears to induce some risk of macular edema (swelling of immune cells to remain in lymph nodes, the center of the retina inside the inhibiting them from migrating into the eye); decrease in lung function; slight brain and spinal cord. increase in blood pressure; increases Potential Benefits and Risks: Positive of liver enzymes (which could indicate results from two large-scale phase III liver injury), and risk of harm to fetus clinical trials have been published (Category C, based on animal studies).
4 MS Connection • Fall/Winter 2010
The long-term safety of Gilenya is unknown at this time. Other phase III clinic al trials of Gilenya, including one involving people with primary progressive MS, are still under way, as are extension studies involving those who have completed trials. These and other post-marketing studies should provide additional data on the safety and efficacy of Gilenya. In the prescribing information, several medical tests are recommended before and after individuals begin taking Gilenya. Pre-treatment tests include: a new or recent blood test to establish lymphocyte (immune cell) count; an ophthalmologic (eye) evaluation; a new or recent blood test to evaluate liver enzyme levels; a new or recent electrocardiogram in those using heart medications, those who have cardiac risk factors, or those who on examination have slow or irregular heart beat prior to starting Gilenya; those who do not have a history of chickenpox or vaccination against varicella zoster virus (VZV) should be tested for VZV antibodies, and those who are negative should consider vaccination before starting treatment with Gilenya. The decision to take an oral MS therapy should be made by people with MS in collaboration with their MS doctors, taking into account a variety of factors, including the effectiveness of any therapy they are currently using, and weighing potential risks and benefits, costs and lifestyle factors.
Moving Toward a World Free of MS
Society Funds Tissue Bank Offering Valuable Research Insights into MS The Rocky Mountain MS Center Tissue Bank is home to the largest collection of human brains and spinal fluid to support multiple sclerosis disease research. For over twenty years, the Tissue Bank has been primarily funded by the National MS Society and is one of only four MS-related tissue banks in the nation. The Tissue Bank has distributed specimens to more than 160 investigators worldwide and over 1,600 people have consented to be donors after death. The Rocky Mountain MS Center Tissue Bank offers researchers a unique opportunity to study multiple sclerosis as it exists in a human being as opposed to laboratory mice. Every major research development has had to rely on animal models, but that treatment does not necessarily translate to the human model. There is no substitute for the human model for examining the disease. This tissue bank has about 350 central nervous system tissue samples including brain and spinal cord, and blood tissues. This year, the tissue bank has received requests from 8 different researchers to utilize this tissue. The types of requests for tissue samples for research projects have recently been for the examination of white blood cell and T cell function and the production of liaisons; a genetic study looking at the protein content embedded in the myelin sheath and how that may trigger MS attacks; infectious possibilities in brain tissue while examining protein in the white tissue of the brain; and finally, the
study of degeneration in the brain over time. Upon request, the samples can be packed in dry ice and overnight shipped to start a new research project. The next step in integrating information is to link the research findings with the National American Research Committee On Multiple Sclerosis (NARCOMS) database which contains information from over 40,000 people in the U.S. and other countries. The NARCOMS database has clinical data of humans with MS over time which provides valuable information to better understand, treat, and ultimately cure multiple sclerosis. The center’s goal is to get the over 10,000 people in Colorado with MS to register in the NARCOMS database. The uniqueness of this tissue bank is that tissue samples are shared with other research institutions so that more research projects can be undertaken and insights can be communicated.
Dr. John Corboy, Director of the Clinical Programs at the Rocky Mountain MS Center Tissue Bank and Chapter Board Member, describes how brain tissue is utilized for research. Dr. Corboy was recently awarded a multi-year, $611,000 research grant by the National MS Society.
Rocky Mountain Tissue Bank Facts: • Established in 1976 • Largest MS-exclusive tissue bank in North America • Over 350 tissue samples • Frozen specimens are stored in 62 giant freezers; capacity for 200 freezers • Temperature in freezers set at -112 degrees Fahrenheit: Text messages automatically sent when temperature drops below this point
• 10 cooling fans run continuously to keep freezers at optimal efficiency • Cameras continually monitor tissue bank activity • It costs about $1,500, on average, to retrieve a brain and ship it to the bank, which also collects spinal-cord tissue from MS patients • Funding primarily comes from the National MS Society
1-800 FIGHT MS (344-4867) • cureMSco-wy.org
Programs Programs & Services
What You Eat = How You Feel
By Elizabeth Yarnell
What I’ve learned in the last decade or so since my own diagnosis with multiple sclerosis is that what you eat is directly related to how you feel. It turns out that mom was right: you are what you eat. All of my research into the link between diet and health has returned to one basic truth: it is better for the body to eat whole foods than processed foods. While a whole foods-based diet provides more usable energy for our bodies, combats fatigue, and keeps our internal digestion running smoothly so we can absorb nutrients, we shouldn’t forget that 80% of our immune system health is based in our guts, too.
While it may not be a surprise to hear that it’s better to eat the whole potato than it is to eat a fast-food French fry, you may find it eye-opening to learn about a way of cooking that makes it just about as quick, easy, and convenient to prepare whole foods as it is to bake a pre-packaged TV dinner…only with a whole lot fewer calories from fat, sugar, sodium, and other chemical additives and preservatives we can all do without. My search for a quick, easy, and healthy weeknight cooking solution led me to invent and patent a method of layering whole foods into a cast iron Dutch oven and flash-cooking it all inside a very hot oven. The Glorious One-Pot Meals “infusion cooking” method means that dinner can take as few as five minutes to prep and still be on the table 30–45 minutes after going in the oven. Not only do we feel better with a few simple changes in what we eat, but our families benefit from eating healthier meals, too. Changing my diet and lifestyle has meant that at 42 I feel better and stronger now
Rosemary Chicken Ingredients 1/4 medium onion, cut into 1-inch slices 2 – 3 chicken breasts or thighs (1/2 to 3/4 lb) sea salt and ground black pepper 6 – 8 small potatoes
1/2 small acorn squash, cut into 1-inch cubes 5 – 10 mushrooms, thickly sliced 15 – 20 green beans, trimmed, cut into thirds 3 small rosemary sprigs or 1/2 tsp dried
Directions • Preheat the oven to 450° F. • Spray the inside of a cast iron Dutch oven and lid with canola or olive oil. • Separate the onion slices and scatter in the pot. • Place the chicken on the onions and season lightly with salt and pepper. • Pierce each potato multiple times with a fork or, particularly if the potatoes are larger, simply cut them into quarters or eighths and arrange them on the chicken. • Next, set the squash cubes on the chicken and add the mushrooms. Cover with final even layer of green beans and lightly season with salt and pepper. Tuck the sprigs of rosemary into crevices. • Cover and bake for 45 minutes, or until 3 minutes after the aroma of a fully cooked meal escapes the oven. Serve immediately.
6 MS Connection • Fall/Winter 2010
than ever before. Managing MS through choosing whole foods and improving digestion is something that allows me to exert some control over this capricious disease. I am empowered through each healthy food choice I make every day, and having an easy, go-to method for making delicious and healthy dinners makes it much easier to make good choices. I shared my secrets for healthy eating and living a robust life with multiple sclerosis in a Colorado Springs program this past September, but you can learn more about Glorious One-Pot Meals, get recipes, and see video demonstrations at www.GloriousOnePotMeals.com. Here’s one of my favorite recipes to get you started off on the right foot. I like to think of this recipe as comfort food without all the pots and pans. In the Western tradition, rosemary has traditionally been a symbol of friendship, love and remembrance. In Chinese medicine, the evergreen herb is used as a warming remedy. Either way, this meal is guaranteed to bring a sense of warmth and security to all who partake.
Moving Toward a World Free of MS
You Can Make a Difference Over the summer, Xcel Energy has adjusted their rate system to include a second tier, thus charging a higher rate for any consumption over a specific amount (500kWh). We applaud Xcel Energy in its efforts to curb consumption and foster conservation. However, for those living with MS and other chronic diseases that depend on higher energy use for medical reasons, this rate change had negative effects. The Public Utilities Commission (PUC) sets rates for Xcel Energy, and is restricted by the State Constitution from including a medical exemption in this rate change. As of today, the Chapter is trying to gather as much data and as many stories as we can from
people living with MS on the effect this rate change is having on them or their families. We were fortunate to have an MS activist join us at the PUC meeting, and express his thoughts and feelings about this rate change. Kirk Williams has been living with MS since 1993 and is a terrific asset and help to the Chapter.
Kirk heard the news that Xcel Energy was changing their rates, and that people with medical conditions who were dependant on higher energy use would not be eligible for any kind of discount or exemption. Kirk knew at this point that his bill would increase substantially due to the heat sensitivity caused by his MS and his heightened use of air conditioning to control this medical issue. Kirk did not worry for himself as he knew he would make do, but he felt significant worry for other people living with MS. He was concerned others could be devastated by this, and that they would not have the funds to cover this rate change. At this point, Kirk called the Chapter and spoke with Sharon O’Hara, Executive Vice President, who then invited Kirk to join us at the PUC meeting. At the PUC meeting, Kirk learned that it is not only people living with MS that are affected by this, but many others who are on certain medications where the side effects include heat sensitivity, or where their symptoms are more likely to flare up due to the heat. There was also discussion on how folks would cut back on energy use at the cost of their health, similar to what we see today when people cut back on buying groceries to pay for their medication or skip taking their medications to afford food. Betty Boyd, a State Senator from District 21 and Chair of the Health and Human Services Committee, attended the PUC meeting, which helped to show that the constituent voice is being both represented and heard. Kirk also commented on the fact that though the issue of a medical exemption is serious and emotionally charged,
the discussion at the meeting was not at all accusatory nor angry, and he felt that this was a constructive approach that is necessary to be successful. As an advocate and informed consumer, Kirk thinks it is important for the Society to be aware and involved in the political happenings, because when an issue arises, you have to have one foot in the door already. If Kirk could give other folks advice on advocacy for the Chapter, it would be to educate themselves on what is going on. “You can’t expect things to just happen, you have to be involved,” he said. His wish for the future of the Advocacy program is that more people get involved. Kirk admits that his MS may cause disruptions in his availability, and worries this may make him unreliable. The great thing about advocacy is that you get involved as little or as much as you would like. It is also a great area for those who are no longer working and have a few extra hours here or there to contribute. Every bit of help is helpful in advocacy!
Together, we share the responsibility of finding solutions to MS issues. Many people living with MS rely on government programs for access to health care, disability benefits, and other services. The National MS Society and MS activists work to ensure those services are beneficial, accessible, and fair. Online and on the ground, thousands of grassroots MS activists are getting involved and taking action. Together, we share the responsibility of finding solutions to MS issues.
1-800 FIGHT MS (344-4867) • cureMSco-wy.org
Exceptional Volunteers Every year the Chapter recognizes volunteers who have gone above and beyond and have taken the extra step to move us closer to a world free of MS. The Chapter celebrates the accomplishments of our exceptional volunteers by presenting seven special awards. Volunteers are nominated by clients, staff, board members, and their volunteer peers. With more than 1600 volunteers and only seven awards, the selection process is never simple! The volunteer award recipients have shown extreme dedication and commitment to supporting the Chapter in finding a cure for MS. Please join us in thanking and congratulating the following volunteers—we couldn’t do it without them!
Debra Downing Chapter Volunteer of the Year
The Chapter Volunteer of the Year Award is designed to recognize a volunteer who lives the mission; they walk the walk and talk the talk. This volunteer demonstrates leadership, overall support and service to the Chapter, ability to further the mission, and outreach to community services. Debra Downing sets an example for others and inspires us all. Debra has volunteered at every MS event offered in the Northern area, as well as created her own. Debra has helped plan two programs this year—the Creative Gift-Making program and a Parents Night-Out Kids Program. She supports our staff by taking on administrative responsibilities as well as recruiting other volunteers. Ayesha Sharma
Programs Volunteer of the Year Award
Special Events Volunteer of the Year
Advocacy Volunteer of the Year
The Programs Volunteer of the Year Award recognizes a volunteer who places the highest value on personal dignity, self-worth, and independence for people affected by MS. Ayesha Sharma brought her considerable intellectual curiosity, strong writing skill and ability to communicate to multiple projects including a project to increase the number of persons in Colorado who receive SSI and SSDI benefits, the submission of a grant to obtain federal funds for respite care, and enhancing our advocacy newsletter.
The Special Event Volunteer of the Year Award is given to a volunteer who has made invaluable contributions to the success of one or more of the Chapter’s special events. Veronica Saenz has helped create the structure and strategy of Walk MS by creatively and diligently working with the Walk MS committee and being the team leader for logistics. Veronica has also created valuable community relationships and fundraising opportunities resulting in increased Walk MS revenue.
The Advocacy Volunteer of the Year Award recognizes an outstanding contribution through leadership relating to action taken by the state and national legislatures in regard to bills affecting people with MS. Alison created an Advocacy Program which involved recruiting and recognizing activists and promoting pressing issues. She also attended the Public Policy Conference in Washington DC where she lobbied for key federal initiatives that impact those living with MS.
8 MS Connection • Fall/Winter 2010
Moving Toward a World Free of MS
Time to Make a Difference If you want to get involved and make a positive difference for those affected by MS, consider volunteering. Sharing gifts of time and skills provides meaningful experiences while enhancing the quality of life for others. Flexible opportunities, both short term and ongoing, meet your busy schedule. We match activities with your talents and interests so your experience is worthwhile and rewarding. Learn new skills while building friendships with others who
know the joy that comes from being part of our volunteer team. Join as an individual or as a group by forming a team from your work, school, church, civic, or other personal or professional organizations.
Get Involved Today!
The chapter mobilizes the talents and resources of people who want to do something about MS. Whether your contribution is time, skills, funds, or ideas, it makes a difference.
• Volunteer for an Event
• Donate to an event or to the Colorado-Wyoming Chapter • Participate in an Event • Be a Virtual Participant • Sponsor One or More of Our Events • Start a Fundraising Event in Your Community
Wild West Walkabout Steering Committee Danny Tomlinson Award for Group Support
The Danny Tomlinson Award for Group Support recognizes outstanding achievement by a group of volunteers. Recipients of this award must demonstrate a capacity to serve as a positive example for other volunteers, provide support to the Chapter, prove its ability to further the Society’s mission, and enhance outreach to community services. For the past five years the Wild West MS Walkabout (WWMSW) Steering Committee has been doing exactly that. Committee members include: Kevin Dellenbach, Kathy Dellenbach, Kendra Driemeyer, Christy Dittmar, Kim Dittmar, Lesley Murray, Lester Murray, Maureen Stockover, and Annette Zacharias. The Wild West MS Walkabout started as a 3-day Challenge Walk run by the Colorado Chapter. When the Chapter decided to diversify its events, a group of dedicated volunteers came together as a team to take on the challenge of organizing the Wild West MS Walkabout themselves. In the four years of this event (the fifth and final event was held in August 2010), the WWMSW has raised over $345,000 to benefit people living with MS.
Volunteer Opportunities Include:
Behind the Scenes Hero
Rookie of the Year
The Behind the Scenes Hero Volunteer Award recognizes a volunteer who goes above and beyond staff expectations, takes initiative in projects, and shows dedication and commitment to the mission of the Chapter. This volunteer works “behind the scenes” in support of events, programs and/or services. Jeff Divine single-handedly secured more than $10,000 in product donations for our events, ran networking events from start to finish, and organized fundraising efforts which promoted our mission.
The Rookie of the Year Volunteer Award recognizes a volunteer who has made a significant volunteer contribution to a chapter or division event or program within their first year of involvement with the Chapter. Brooke’s first year with the Chapter was at Walk MS Fort Collins and then she volunteered for Bike MS, The Wild West MS Walkabout and continues to provide practical support and assistance to others living with MS. Brooke’s Walk MS team raised close to $13,000 in their first year (Brooke raised close to $7,000 alone).
• Administrative and Professional • Community Events • Chapter Events • Internships • Leadership and MS Ambassador • Programs and Advocacy
For More Information Jennifer Hibbard Community Outreach Coordinator firstname.lastname@example.org 303-698-5443
1-800 FIGHT MS (344-4867) • cureMSco-wy.org
Chapter Champions TOP OF THE CHAPTER recognizes those teams and individuals who support the mission of the Chapter and give of their time, talents, energy, and spirit to raise critical funds necessary to support groundbreaking research and provide essential programs and services to all people affected by multiple sclerosis.
Top 100 Walk MS INDIVIDUALS 1. Rob Hartnett
2. David Alexander $26,510 3. Lynette Steininger $11,200 4. Margy Conant
$11,125 5. Wendy Fisher $9,560 6. Katy Spritzer $9,238 7. Brandt Wilkins $8,140 8. Jay Price $7,764 9. Sheila Sharpe $7,440 10. Brooke Raymond $6,875 11. Scott Kaplan $6,872 12. Kathleen Goodhew $6,308 13. Barbara Urbanczyk $6,190 14. Debra Chase $5,404 15. Mary Athanites $5,285 16. Christine Cillian $5,235 17. Julie Brubaker $5,050 18. Liz Marvan $5,000 19. Howard Zemel $4,289 20. Ruth Head $4,265 21. Wendy Thompson $4,256 22. Alison Zellner $4,160 23. Debra Richman $4,086 24. Mary Wilham $4,055 25. Daniel Lifshen $4,031
26. Caroline Jackson
52. Pam Carlson
27. Laurie Thorne
$4,025 $4,000 28. Leslie Durant $3,981 29. Nicole Dean $3,927 30. Louise Thompson $3,925 31. Heidi Dominguez $3,850 32. Connie Harris $3,795 33. Linda Goble $3,774 34. Brooke Nichols $3,761 35. Nicole McGarvey $3,627 36. Carmen Bryant $3,600 37. Nikki Pfeiffer $3,541 38. Steffi Oâ€™Malley $3,425 39. Dawn Bozarth $3,328 40. Brandon Winkler $3,320 41. Rosanna Kippur $3,250 42. Beth Newsom $3,215 43. Carrie Nolan $3,200 44. Kathy Oakley $3,090 45. Sandra Legg $3,082 46. Jan Criss $3,064 47. Holly Collins $3,050 48. Martha Fiser $3,035 49. Karen Kaplan $3,001 50. Sherene Clowers $2,969 51. Marissa Lifshen $2,859
53. Donna Bachoroski $2,760
77. Sharon Gibson
54. Craig Lopez
78. Lisa Vargo
10 MS Connection â€˘ Fall/Winter 2010
55. Michael Derrick 56. Joseph DeLorme 57. Donovan Mouriz 58. Lorraine Carlson 59. Richard Durant
$2,830 $2,736 $2,700 $2,698 $2,635 $2,630 $2,625
60. Jolene Hennessy
James 61. Steven Martinez 62. Scott Hansen 63. Joellen Taylor 64. Justin Peterson 65. Theodora Pappas 66. Carly Brantz 67. Steve Whaley 68. Tara Wilson 69. Alexa Cornell 70. Ruth Bourquin-Odens 70. Tiffany Grice 72. Leo Schettler 73. Amy Vaccher 74. Anuska Ullal 75. Richard Raymond
$2,575 $2,520 $2,503 $2,480 $2,475 $2,473 $2,450 $2,445 $2,429 $2,420 $2,395 $2,395 $2,360 $2,340 $2,287 $2,275
76. Christine Harpel
79. Lisa Swanson 80. Enoch & Brittany Miller
$2,235 $2,226 $2,215 $2,191
$2,180 $2,180 82. Kristine Paden $2,164 83. Kristie Murtaugh $2,160 84. Andrea McCay $2,130 85. Jane Runge $2,129 86. Kyle Culotta $2,080 87. Andy Stowe $2,075 88. Rosalind Beilfuss $2,065 89. Lana Shuff $2,061 90. Lisa Green $2,040 91. Sharyn Smith $2,038 92. Matilda Fischer $2,030 92. Martha Heywood $2,030 94. John Corboy $2,025 95. Carylon Edwards $2,020 96. Rachel Hunt $2,015 97. Sherri Morgan $2,005 98. Jeff Beer $2,000 98. Colin Dumpert $2,000 98. Julianna McGrew $2,000 80. Jen Rupert
An Insider’s Perspective on Walk MS
Top 10 Walk MS CORPORATE TEAM
By Suzanne Beer
I look forward to the Walk to ground myself in the reality that, even though I may be in remission right now, thousands who have this disease aren’t, and remission won’t always be my friend (eh, most days it’s an acquaintance, really).
2. 3. 4. 5. 6.
I go into the Walk to soak up the atmosphere and the very unique and passionate culture that exists with people who want to do something about MS. Before the Walk begins, it’s a culture, a temporary neighborhood. Once the Walk starts, it’s a community…people who can walk together and share stories and openly eavesdrop on someone who was diagnosed 6 months ago and tell them you’ve been diagnosed for more than fifteen years, and maybe, just maybe it’s going to be ok. It’s a community where you can tell another mom you never met in person, but in an online group for new moms, and whose husband has MS…to come see you at “your tent”. It’s a community of people who come together for a day to be neighbors and then figure their place in the movement the other 364 days. My place in the movement is here, in Information Technology, at the Society. The most amazing part to me is prefacing the Walk with a visit to the tents because that’s the best way to stop and ask why someone is so moved to be there. It starts a conversation with a “temporary neighbor” that continues a friendship and is the foundation of the walk and to the community. Anyway, to the volunteers and staff, maybe there comes a day when you may think you aren’t making a difference…I want you to know as a person with MS, you do. I talked with so many people, rarely introducing my profession into the conversation because folks are usually more candid, yet…everyone I talked to with MS said “I come here to feel a part of a community/ culture/event” and overwhelmingly they felt that. I made lots of new friends that day and some old ones shone in a new light. I am passing along a picture of two kids, one mine, as I hope they see the cure in the same lifetime as mine.
7. 8. 9. 10.
Home Buyers Warranty $53,393 Team In Motion $15,085 The Clinic Colorado $10,189 McWhinney $7,252 Marsha’s Stars $5,650 Colorado Community Bank $5,605 ERA $5,497 Activists for MS-Denver $5,240 Wells Fargo Stage Coach-Denver $5,181 Rocky Mountain MS Center $5,035
FRIENDS & FAMILY TEAM 1. 2. 3. 4. 5. 6. 7. 8. 9. 10.
Wet Paint Walkers Rothstein Kass Walkers Down With Disease For a Cure Arvada Reds Brooke’s Survivor Walk Crazy Legs Team KOMS (Knock Out MS) Lemmings Team Cure
$39,810 $34,774 $20,080 $15,359 $14,632 $12,840 $12,504 $11,970 $11,092 $10,023
Inaugural Event is the 1st in the Nation The Chapter’s inaugural Wells Fargo Hike MS event was held on Saturday, July 24, 2010 at Copper Mountain Resort. The first Hike MS event in the nation raised nearly $35,000 and attracted over 400 participants, volunteers, and supporters from around the state and across the country.
challenging at 10 miles. Each trail offered scenic views, camaraderie, and a true Rocky Mountain experience.
The Wells Fargo Hike MS at Copper Mountain Resort featured three hike options with varying distances and levels of challenge. The hikes were tagged similar to ski runs: the green, twomile hike was the easiest and was perfect for families or first-time hikers; the blue hike was an intermediate trail that was six miles; and the black trail was the most
Top Hike MS teams 1. Team In Motion 2. Macklin 3. CUREageous
1. 2. 3. 4. 5. 6. 7. 8. 9. 10. 10.
Wendy Macklin Noah Galinkin Robert Barclay Dale Lortie Anne Marie Pewterbaugh Tracy Thomas Tc Wait Eli Saperstein Carolyn McGrady Danica Cox Danette Nicolay
$1,150 $888 $885 $860 $800 $580 $570 $548 $535 $500 $500
1-800 FIGHT MS (344-4867) • cureMSco-wy.org 11
Team Sugar Bee Is All The Buzz Team Sugar Bee is the first friends and family team in Colorado to reach the one million dollar cumulative fundraising mark. The entire Walker family helps out by either riding in the event or volunteering as Team Sugar Bee sponsors the route lunch stop. Diagnosed in 1988 with multiple sclerosis, Kelly Walker-Haley lived in Texas and moved back to northern Colorado which she describes as, “the best place I could be for diagnosis and treatment. She adds, “It has been physically tough, but in many ways I have been blessed by the people I meet and the support of my family. I feel so fortunate to have them.” Walker copes with secondary chronic progressive multiple sclerosis which means allowing for 1 ½ - 2 hours to get ready in the morning. She relies on some assistance to get started, but once going, the day soon flies by in the company of family and friends. “With all of the research going on, I still have hope,” explains Walker. “And if not for me, then for the next generation,” she adds with her signature beaming smile which could launch a thousand bikes—destined for Bike MS and to make a difference in the fight against MS. Kelly was given the childhood nickname of Sugar Bee by her brother Eric; and when she was diagnosed with MS, her two brothers Eric and Tim put a Bike MS team together. It seemed only natural to name it Team Sugar Bee. “We started with 4–6 people and now we’re up to 160+ people. We really want to raise awareness for MS, and raise some money for research and programs to help people with MS. We’ll keep doing that until a cure is found,” explains Tim Walker. “We felt that as a family this was a way to help and not just help Kelly but to help everyone with MS. We have fun at the Bike MS event volunteering and have family come in from all over the country,” explains Betty Walker, aka Mama Sugar Bee. “We started small and have grown over the years and are hoping to raise around $150,000 this year. We have sponsored the lunch stop for the last seven years and
12 MS Connection • Fall/Winter 2010
Walker Family: Kelly (Center), Tim, Eric, Betty, and Tim Sr.
will feed over 3,200 riders and that is a lot of organization. We have 40 volunteers working the lunch stop and making sure everyone is taken care of. It makes me feel good and the people are wonderful. We’re hoping they find a cure or something to stop the progression of MS. The MS society has been great to us and Kelly and we want to help in any way.” When asked how she feels about that many people riding for her and raising over one million dollars over the years, the Sugar Bee herself responds, “It’s very humbling and so cool. I have the most supportive people in my life. My brothers, my husband, sister-in-laws, and my mom and dad all helped to make it a reality. When we first started it was just a dream. The money we raise during Bike MS and throughout the year goes toward research and services for people with MS. I feel very strongly about the work of the Colorado Chapter of the MS Society—they have been extremely supportive and they keep the mission going. I am grateful to all those who make this event happen each year. If you have a chance to volunteer or cheer or help out in any way, you should do it.”
Top 10 Bike MS CORPORATE TEAM 1. 2. 3. 4. 5. 6. 7. 8. 9. 10.
Team Stay Fit at Hyatt $163,152 Left Hand Brewing $67,257 Great West Life $52,359 Williams Rig Riders $46,995 Lockheed Martin Voyagers $46,652 Frontier Airlines $32,338 Comcast Cranks $31,776 Teletech $30,326 Team KBCO $26,232 Brownstein Hyatt Farber Schreck $25,900
FRIENDS & FAMILY TEAM 1. RawHinies $239,914 2. Team Sugarbee $152,959 3. Ain’t Too Proud 4. 5. 6. 7. 8. 9. 10.
to Sag TEAM 4 WOOFIE Robinson Dairy Team ATX Team Kitty Patty’s Pack Team Jude Aimco
$68,552 $55,228 $51,872 $45,129 $40,490 $35,597 $34,910 $31,702
Team Stay Fit at Hyatt–Top Corporate Fundraising Team for Bike MS 2010
Top 100 Bike MS INDIVIDUALS 1. David Ballowe 2. Jennifer Sales 3. Gail Schneck 4. Carl Craig 5. Matt Dickman 6. Julie Brubaker 7. Phil Yastrow 8. Bethany Leleck 9. Gregory Leonard 10. Katie Brown 11. John Obering 12. Steve Clayton 13. Brian Wixted 14. Susan Chrisman 15. Kara Schwalm 16. Vincent Nickols 17. Beth Tatem 18. Michael King 19. Paul Camp 20. Tom Falconer 21. Steven Natali 22. Tim Walker 23. Bill Horger 24. Charlie Collins 25. David Williams 26. Melissa O’Brien
$26,725 $26,487 $25,000 $15,405 $13,499 $12,650 $11,845 $11,676 $11,308 $11,155 $10,800 $10,785 $10,615 $10,555 $10,505 $10,480 $10,000 $8,965 $8,585 $8,445 $8,350 $8,178 $7,876 $7,745 $7,550 $7,320
27. Paul White 28. Jeanette Ho 29. Richard Snyder 30. Jim Markisohn
$6,970 $6,710 $6,614 $6,600
Lowrie-Smentek 32. Cary Polevoy 33. James Kratofil 34. Bev Schneiter 35. Paul Karlsson 36. Stacy Ohlsson 37. Barbie Halseth 38. Robin Archuleta 39. Eric Walker 40. John Benton 41. Elizabeth Bankhead 42. Rita Oliver 43. Edward Rothschild 44. Bart Cooper 45. Tim Blach 46. Katja Christensen 47. Mark Germinario 48. William Wood 49. Chris DeMarche
$6,350 $6,090 $6,080 $6,040 $5,968 $5,940 $5,925 $5,754 $5,625 $5,556 $5,535 $5,379 $5,352 $5,285 $5,175 $5,170 $5,125 $5,105 $5,100
49. Ray Anderson
$5,100 $5,100 52. Scott Mishoe $5,080 53. Lee Kamlet $5,067 54. Bradley Gustafson $5,015 55. Alan Wardlow $5,010 56. Beth Spellicy $5,005 57. Robert Kasnekaw $5,000 58. Robin Chaney $4,985 59. Gary Traver $4,925 60. Muthukumarappan Ramurthy $4,895 61. Gretchen Mitterer $4,855 62. Janette O’Brien $4,812 63. Mike Jossi $4,725 64. Kelly Tissier $4,715 65. Barton Baker $4,700 66. Bev Sloan $4,675 67. Jason Steiert $4,515 68. Ron Ranes $4,500 69. Eric Carlton $4,460 70. Chad Mitchiner $4,450 71. Linda Chumbley $4,440 72. Theresa Stevens $4,385 73. Curtis Head $4,350 74. Chris Lennert $4,347 49. Christine Peebles
75. Gerard Laurain 76. Mark Emeis 77. Paige Garnett 78. Greg Belfor 79. Beth Behnke 80. Bill Trimarco 81. Kenneth Medal 82. Mary Shahan 83. Kathey Clark 84 Brent Drever 85. Karen Whittier 86. Marsha Macro 87. Jay McAvoy 88. Alan Delp 89. John Dubler 90. Craig Mason 91. Wayne Ernissee 92. Kristy States 93. Ken Heisel 94. Jennifer Caskey 95. Bekkey Wiebe 96. Kristin Froehlich 97. Christian Samay 98. Kevin Yoder 99. Andrea Lake 100. Gary Koldyke
$4,305 $4,270 $4,205 $4,195 $4,175 $4,165 $4,075 $4,065 $4,040 $4,000 $3,860 $3,856 $3,818 $3,745 $3,740 $3,700 $3,660 $3,640 $3,627 $3,625 $3,610 $3,605 $3,600 $3,530 $3,515 $3,505
1-800 FIGHT MS (344-4867) • cureMSco-wy.org 13
Moving Toward a World Free of MS
Programs Living With MS
Speakers Inspire Giving at MS Society Lunch myself. I reach outside myself by giving a gift every day for a month. So I did, and you know what? When you focus on giving and gratitude, your life expands.”
Heather Craig and her father Carl Craig
By JOANNE DAVIDSON
An author whose debut work landed on the New York Times best-seller list and a 14-year-old determined not to let multiple sclerosis get her down spoke with conviction at Women on the Move, the annual luncheon put on by the Colorado Chapter of the National Multiple Sclerosis Society. Cami Walker, whose book, 29 Gifts: How a Month of Giving Can Change Your Life, began a worldwide movement, shared that she was diagnosed with multiple sclerosis in 2006—three weeks after returning from her honeymoon. She awoke with blurred vision and “immediately knew something was terribly wrong; I saw doctor right away and when I was told it was MS, my first reaction was complete and total panic.” I called a friend, hoping for a pity party, and she told me to stop thinking of
The luncheon at the Marriott City Center also featured remarks by Heather Craig, who was 14 when she learned, earlier this year, that she had multiple sclerosis. “When I was diagnosed, I was really sad…mostly because I didn’t know much about it. I really don’t like having it, but I’ll get through it. I still snowboard, play volleyball and take advanced placement classes. I’m not going to let it change who I am and what I want to do with my life.” “Heather is an amazing young woman,” said her dad, Craig, who joined her at the podium. “We are proud of her strength and her willingness to talk about it.” Devastating as the diagnosis was, he added, hope is what keeps the family going. Carrie Nolan, president of the National MS Society’s Colorado Chapter, introduced David Hartman, son of the late Joanie Hartman. Joanie was the founder of the Women on the Move Luncheon and longtime chapter board member and supporter. David announced that the family was giving a $10,000 challenge grant in her memory; a second $10,000 gift was given by one of Hartman’s friends, Florida businessman Ralph Holden. Joanne Davidson is the Society Editor for the Denver Post. The Denver Post is a proud sponsor of the National MS Society.
Wendy Booker offered heightened inspiration at the Northern Colorado Women on the Move Luncheon In June of 1998 Wendy Booker, mother of three, was diagnosed with relapsingremitting MS after experiencing balance problems, blurred vision and numbness on her left side. When first diagnosed, Wendy was devastated. But it took very little time for her to transform anguish into inspiration. Mountain climbing became the next conquest—to climb the highest mountain on each continent. Just five years later, Wendy Booker has successfully reached the top of six of the Seven Summits—Mt. Kilimanjaro, Mt. McKinley, Mt. Elbrus, Mt. Aconcagua, Mt. Vinson Massif and Mt. Kosciuszko—the first person with MS to do so. As Wendy explained at the Fort Collins Women on the Move Luncheon, “While I may not have succeeded in reaching all of the peaks, I still plan to go to the top of the world in another way; next stop—the North Pole.” Wendy’s message is simple…whatever challenges you may face in life, please climb on—the view from the top is breathtaking!
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 MS Society at www.nationalMSsociety.org or 1-800-344-4867, to learn about ways to help manage multiple sclerosis and about current research that may one day reveal a cure. The National Multiple Sclerosis Society does not endorse products, services or manufacturers. Such names appear here solely because they are considered valuable information. The National Multiple Sclerosis Society assumes no liability for the use of contents of any product or service mentioned. Information provided by the Society is based upon professional advice 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 National Multiple Sclerosis Society is dedicated to a world free of MS. ©2010 National Multiple Sclerosis Society, Colorado-Wyoming Chapter
1-800 FIGHT MS (344-4867) • cureMSco-wy.org 15
Broadway Station 900 S. Broadway, Ste 250 Denver, CO 80209
SAVE THE DATE 2011
SPRING Walk MS
Laramie, WY April 2 Casper, WY April 9 Cheyenne, WY April 16 Evanston, Rock Springs, WY April 30 Gillette, WY May 7 Denver, Colorado Springs, Ft. Collins, Grand Junction, CO May 14 Boulder County, Loveland, Pueblo, Glenwood Springs, CO May 21 Cody, WY March 26
Bike MS June 25 – 26
Aug 20 – 21
Hike MS July 30 Copper Mountain, Aspen/Snowmass, CO
Southern Colorado, Winter Park, Durango, CO
Mud Run MS August
Winter Park, CO
LEADERSHIP EVENTS Women on the Move Luncheons Aug
Ft. Collins, CO
Dinner of Champions March 24
Grand Junction, CO