SUMMER 2013 GATEWAY AREA CHAPTER MS CONNECTION MAGAZINE Don’t just ride Team Kaldi’s hits Million Dollar Mark INSIDE 4-5 8-9 16-17 27-29 MAKING A FIREFIGHTER CHAPTER MAKING THE THIS RUN FOR IT STEPS UP FOR PRESIDENT MOST OF TALK ISSUE COLLEAGUE MOVING ON MS GROUPS 2 MS CONNECTION: SUMMER 2013 LETTER FROM THE PRESIDENT INSIDE THIS ISSUE Dear Friends, Be A Digital MS Activist ................. 3 It is with mixed emotions that I write this column. Making A Run For It ................... 4-5 The Gateway Area Chapter has been my home for the last 20 years, and this month I will be moving Kaldi’s Hits Million Dollar Mark .. 6-7 on to a new position with the National MS Firefigher Steps Up For Colleague .. 8-9 Society’s West Region. Balanced Care Workshop ................ 9 I can’t tell you what an honor it has been for me John L. Trotter Program ................. 9 to work with the board members, staff, volunteers, and everyone Ask The Professional ......................10 connected to the MS movement in Missouri and Illinois. I thank you all for your commitment to a world free of MS, and for Camp Hope ...................................11 allowing me to play a part in it here. CarePartner Column ......................12 When I look through the pages of this magazine, I can’t help but Connections ...................................13 reflect on the progress we’ve made since I first became a part of this Research On The Road ..................13 movement. Twenty years ago, we did not have a single disease- modifying drug. On page 10, Dr. Myles Goble reflects on the Research MS .............................14-15 challenge of choosing among the 10 FDA approved treatments. Chapter President Moving On ..16-17 We highlight one of our Bike MS teams, Team Kaldi’s Coffee, on Update on Therapies ......................17 page 6, for reaching the milestone of $1 million raised. The growth Financial Assistance .......................18 in the Bike MS: Express Scripts Gateway Getaway Ride, along with Walk MS, the Dean Team Automotive Challenge Walk MS, Wellness Network ..........................18 MuckFest MS, MS Corporate Achievers and DIY events (see page Tips To Beat The Heat ...................19 8) over the last two decades have been tremendous, and it is due in large part to dedicated teams like Kaldi’s. Volunteer Column ........................ 20 Chapter News ............................... 22 We highlight Kim Williams on page 27, one of our Talk MS group facilitators. Committed volunteers like Kim providing support to Alternative Treatments .................. 23 other people living with MS in our community show the power of Family Weekend ........................... 24 all the connections we have built at the Chapter. Talk MS Groups .......................27-29 I am grateful for all the wonderful people I have had the Therapeutic Recreation ............. 30-32 opportunity to work alongside, and I know that I will miss you all Chapter Calendar .......................... 34 as I move into my new role. Thank you for everything! Program Registration .....................35 Sincerely, Midwest Teleconference Series ...... 36 P.S. Although I will be working in the West Region of the National MS Society, my home will still be here in Missouri! GATEWAYMSSOCIETY.ORG | 1-800-344-4867 3 ADVOCACY their social media pages and by thanking them on Facebook or Twitter for their supportive actions. BE A DIGITAL MS • Recruit. Encourage others to join the movement by directing them to our video ACTIVIST at ntl.ms/YouCanBeAnMSActivist, or to www.nationalMSsociety.org/ In 2012, MS activists sent tens of thousands digiMSactivist. of emails, placed hundreds of phone calls, and Become a digital MS activist and help shape made hundreds of in-person visits to members the conversations today that will drive change of Congress asking for their support on issues tomorrow—we promise you, people will listen! important to people with multiple sclerosis and their families. And now there are more DEAR COLLEAGUE ways for MS activists to connect—online. “Dear Colleagues” are important tools in DRIVING CHANGE supporting legislation that impacts people with multiple sclerosis. They are letters Digital MS activists—like all MS activists— sent by one or two members of Congress want to drive change and do so by amplifying to fellow members, usually asking for their voice and connecting with elected co-sponsors on a new bill or seeking to officials over social media. influence recipients’ votes on a particular issue. The Society often helps compose At www.nationalMSsociety.org/digiMSactivist, letters that support legislation important learn how to share your story, connect with to people with MS. MS Activists help other MS activists and build relationships gain signers through Action Alert emails. through social media and email. The webpage includes ways to: This spring, Dear Colleagues were circu- lated in Congress to support $10 million • Get informed. Become part of the MS in funding for the MS Congressionally Activist Network. Receive e-newsletters Directed Medical Research Program, and Action Alerts about important pieces $32 billion for the National Institutes of of legislation. Send emails with a few clicks Health, and $2.5 million for the Lifespan of your mouse. Respite Program. The Congressional MS • Rise up. Learn where your elected officials Caucus and MS activists are working in stand. Speak out on issues important to coalition with other groups to preserve you as a person affected by MS. these funding levels for FY 2014. To join the effort, go to www.nationalMSsoci- • Take Action. Build relationships with ety.org/MSActivist. elected officials by posting on and liking 4 MS CONNECTION: SUMMER 2013 LIVING WITH MS MAKING A RUN FOR IT Like most people, Bill Sinak wasn’t sure what the future held when he was told “you have MS.” “I didn’t know if I would be able to do much in 5 or 10 years,” said Bill, who was diagnosed when he was 29. His wife had just had a baby girl. “I wasn’t really sure what my life was going to be like. Would I be able to do things with my kids?” As an athlete, Bill already lived an active lifestyle. After being diagnosed he got even BILL SINAK more active. He has ridden in Bike MS every RAN 200 MILES year for the past 19 years and began running marathons in 2000. IN 9 DAYS IN COLORADO AS “My neurologist said from the start to stay PART OF THE MS healthy and to stay active,” Bill said. RUN THE US RELAY ACROSS THE This June, Bill went the extra mile – in fact he went an extra 200 miles. As part of the 3,000 UNITED STATES. mile relay run across America called MS Run CLICK HERE TO the US Relay, Bill ran from Steamboat Springs SEE MORE. to Hudson, Colorado in 9 days in early June. “I like to run, but this is way longer than I had ever run. I felt surprisingly strong almost “This run was truly a life-changing journey the entire run. The cool crisp mountain air for me,” Bill said. “Participating in MS Run was like breathing new life on a daily basis. I the US was an opportunity for me to take it was humbled by how amazing it was to be out to an entirely new level of both awareness and in the middle of nowhere, all by myself, just fundraising.” running mile after mile across our beautiful country.” Bill read about Ashley Kumlien’s run across the United States a couple of years ago and Bill, who has run 18 marathons, is determined when he heard that she was organizing a relay to not let his MS slow him down and part of run across America, he knew he had to be a the reason he’s doing the run is simply because part of it. he still can. “I thought it was right up my alley,” Bill said. “I want to do whatever I can to stay healthy,” GATEWAYMSSOCIETY.ORG | 1-800-344-4867 5 Bill said. “Part of it is that I didn’t know how long I’d be able to do these things. I’ve been lucky with my MS so I’ve been able to stay a step ahead of it with my medications, activity level, and my mental attitude.” The three goals of the MS Run The US Relay are to raise awareness, raise funds and inspire other people living with MS to keep moving. Bill has raised close to $30,000 riding in Bike MS over the years for team Copaxone and he has already raised more than $13,000 for his run – mainly online. SINCE HE WAS DIAGNOSED WITH MS 20 YEARS “I have a great support network of people who AGO, BILL SINAK HAS BEEN DETERMINED TO KEEP have been donating to my bike ride for years,” MOVING THROUGH BIKE MS AND MARATHONS. Bill said. “I sent out a mass email to everyone who has supported me, and Facebook and volunteering.” Twitter have been huge. I’ve probably gotten the majority of donations from Facebook and After 9 days, 200 miles of running and more all over the world on Twitter.” than $13,000 raised, crossing the finish line was bittersweet. Only two of the 14 relay runners live with MS, making Bill even more of an inspiration. “When I finally reached the finish, it was somewhat surreal and I had mixed emotions,” “I’ve been humbled by all the support from Bill said. “It was great to accomplish what I people,” Bill said. “Knowing I’m one of the set out to, but it was a bit sad having it come two people out there doing this with MS, it’s a to an end.