UTAH - SOUTHERN IDAHO CHAPTER
M O V I N G T O W A R D A W O R L D F R E E O F M S | D E C- F E B • 2 0 12
Many Achievements to Applaud This Year As another year comes to a close, it’s a good time to pause and reflect on the progress made. Our community, volunteers, donors and staff have all worked passionately in 2011 to further our mission of creating a world free of MS. This year we celebrate the following great achievements:
2011: Lots to cheer about!
THANKYOU The Chapter celebrates: • 936 volunteers • 10,060 event participants • $2.8 million raised • Quality programs & services for people with MS • Home of two “Partner in MS Care” centers • More funding for research
• 936 individual volunteers who gave 10,148 hours of service organizing events, providing office administration support, leading mission programs, serving on committees and helping people with MS. • 10,060 passionate event participants who walked, ran and cycled. Together they raised more than $2.8 million to help fund research and services to support people impacted by MS. We estimate that 1 in 300 people in our area lives with MS, and 6,600 of them have registered with the Chapter to receive information and support services. We celebrate the progress made in 2011 to more effectively deliver programs and services to our two states. We’ve expanded social work services throughout our chapter and grown our direct assistance to include Self Improvement Grants to individuals, scholarships to students living with or affected by MS, and financial assistance when MS creates gaps in a family’s budget. The Chapter worked to build relationships with healthcare professionals and community agencies to insure we “President’s Message” CONTINUED ON PAGE 3
INSIDE THIS ISSUE
Neck of the Woods
Page 8 Page 6
Supporting the Mission
HIP HIP HOORAY! CONGRATULATIONS TOP TEAMS & Captains Bike MS 2011 Team Bad Ass Coffee $85,955
Cyprus Credit Union $56,171
Walk MS 2011
L-3 Communications $23,249
VMS Against MS
Mud Run MS Utah (renamed Muckruckus MS!)
$6,210 Little Dave Stephenson
The Little Champs
Mudders in Zion
Rollin In It!
The Mudd Slingers
The Lucky 13’s
Calling all team captains! It’s time to start planning for the 2012 events. Do you lead a team or are you interested in starting one? Please join us at our first Team Captain Kick Off meetings of 2012. Look for more information online or contact Courtney. Frost@nmss.org.
MS Awareness Week (March 11-18, 2012) is quickly approaching. We all can grow awareness. What will you do? Do you have connections in your community to help get the word out and paint the town orange? Take advantage of MS Awareness Week and use it as a great opportunity to tell people about MS, to attract new team members, to host a community fundraising event or to get involved by volunteering or advocating for MS issues. Start making plans and help make a bold statement!
January 25, 2012 | TBD, Boise February 4, 2012 University Guest House, Salt Lake City
PuBlication oF the national multiPle scleRosis society utah-southeRn iDaho chaPteR 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 nationalMSsociety.org or 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, experience and expert opinion. Information provided in response to questions does not constitute therapeutic recommendations or prescriptions. The National Multiple Sclerosis Society recommends that all questions and information be discussed with a personal physician. The National Multiple Sclerosis Society is dedicated to creating a world free of MS. © 2011 National Multiple Sclerosis Society, Utah-Southern Idaho Chapter National MS Society Utah-Southern Idaho Chapter 6364 S. Highland Drive, Suite 101 Salt Lake City, UT 84121 Boise Office 6901 W. Emerald Street, Suite 207 Boise, ID 83704 Follow us: facebook.com/MSutahIdaho twitter.com/CureMSutahIdaho
CONTINUED FROM COVER have resources and referrals for everyone who calls looking for information and support for their unique circumstances. We’re also proud to be the home of two “Partner in MS Care” centers – the University of Utah’s Department of Neurology MS Clinic and Rocky Mountain MS Clinic. Both were recognized in 2011 by the National MS Society as leaders in comprehensive care. This rigorous and prestigious designation has only been awarded to 40 clinics in 19 states. Our Chapter is home to two of these! We congratulate Drs. John Rose and John Foley for being frontrunners in clinical care, as well as the many other clinicians in our area who collaborate and work together to serve our population so well. The Society remains committed to finding a cure for MS. Today we are investing $42.6 million on the most promising MS research projects around the world. Right here in our chapter the University of Utah received some of those funds to support Dr. Gael Yonnet as an MS Clinical Fellow, and to fund the Data Coordinating and Analysis Center for the Society’s Network of Pediatric MS Centers. In addition, the $250 million NOW campaign (No Opportunity Wasted) was launched this year as a bold initiative to fund research to stop disease progression, to restore lost function, and to end MS forever. There is more progress to be made and together we can create a world free of MS! Please join us in 2012 – volunteer, participate in an event, seek out a program or tell a friend about the great work being done by the National MS Society. Thank you!
Annette Royle-Mitchell Chapter President
TOLL FREE NUMBER 800 344 4867
living with ms
Walk this way: Using walking poles Potential tools in the walking arsenal that people with MS might want to consider are walking poles. These are an adjustable-length ski pole – like shafts made of very light metal (such as titanium, carbon fiber or aluminum) with handles (called grips). Many have adjustable wrist straps and tips designed for walking on flat, steep or rugged terrain. Because they are used in pairs, poles—which lie between a cane and a walker on the continuum of assistive devices—offer increased balance, steadiness and support, according to Sue Kushner, PT, MS, associate professor of physical therapy, Slippery Rock University, Penn., who has spent much of her career working with people who have MS. “You can move a little faster, because bilateral support gives more stability and speed,” she said. Studies suggest that poles reduce the force on joints and help distribute the body’s weight better, meaning less work for the legs, knees, feet, hip and back. Less stress on the lower body translates into less fatigue, a frequent symptom of MS. “If you use poles instead of a cane, you may conserve energy,” Kushner said. ACE-certified personal trainer Jayah Faye Paley took up pole walking when she met a nice fellow using poles, who was, she said, “poetry in motion on the trail.” She was so taken with both him (they married in 2003) and the poles that she made a career of teaching people to use them optimally. Paley has created two training DVDs, including one for people with mobility challenges. “With minimal training – 4
usually less than an hour – you can walk more fluidly and with a natural pattern because you recruit and strengthen the muscles that support and elongate the spine,” she said. Other benefits, Paley added, are confidence and focus. “You are walking for exercise, not just strolling – the poles are consistent reminders to move better.” Learn more at PolesForMobility.com.
Pole Primer “Talk to your physical therapist before you try them,” physical therapist Sue Kushner cautioned. Then choose poles based on your height, weight, hand size, issues (balance, for example) and your fitness or mobility goals. “Make sure they’re the proper height—about waist level, a little higher than a cane—and a comfortable weight. If you’re using them all day, you do care about their weight, especially if you have any weakness in your wrist muscles,” Kushner added. One drawback is that you can’t carry much with poles in both hands. However, a backpack is one possible solution. Good poles cost about $90 to $140 and should last a lifetime.
SELFIMPROVEMENTGRANTS Each year Self Improvement Grants are given to help fund personal wellness initiatives and make it easier for people with MS in the Chapter to adopt healthy pursuits. The grant is a reimbursement of up to $100 toward activities such as a gym membership, yoga classes, physical therapy co-pays or nutrition counseling, among other healthy activities. Apply today! Learn more on our website or call 800-344-4867 (option 1).
cureMSutah.org - cureMSidaho.org
living with MS
Self-help Groups: Learn, Grow, and Connect From Idaho’s Treasure and Magic Valleys down to Utah’s Dixie region, and everywhere in between, self-help groups are an important part of the National MS Society’s mission to “address the challenges of everyone affected by MS.” Groups are typically comprised of people living with MS and can include care partners or other family members as well as newcomers. The self-help group leaders are trained by the Society to guide productive discussions and inform members about helpful programs and services the Society offers. Meetings typically happen once a month and provide an opportunity for participants to share with each other what it means to live with MS, including setbacks and successes. In addition, some leaders invite healthcare professionals or other community leaders to speak about issues related to MS and local services. Many attendees also form a bond of camaraderie and gather together for other events like Walk MS.
Society Scholarships Applications for the National MS Society’s scholarship program are now available online and due January 13, 2012. Qualified students planning to pursue a college or technical school degree and who either have MS themselves or a parent with MS can receive scholarships ranging from $1,000-$3,000. People living with MS who have not yet been to a secondary school also may apply. This past spring, the Chapter awarded $21,000 in scholarships to 12 deserving students from Idaho and Utah. Together with chapters across the country, more than $1 million was awarded. Learn about past Chapter recipients at cureMSutah.org or cureMSidaho.org. Start the 2012 application process now. Visit nationalMSsociety.org/scholarship.
There are a multitude of benefits from participating, including, but certainly not limited to, learning new information, connecting with others who face similar challenges, feeling less isolated, feeling more empowered to live well, improving coping skills, and finding reassurance and support from others who have similar experiences. Currently, there are support groups in Boise, Nampa, Twin Falls, Idaho Falls, Ogden, Centerville, Salt Lake City, West Jordan, Provo, Price, Cedar City, and St. George. If you are interested in joining a self-help group or would like to start one, please contact the Chapter at 800-344-4867. Take advantage of the opportunity to learn, grow, and connect with others in a self-help group near you!
ANNUALMEETING Celebrate a year of accomplishments and hear from relationship expert Matt Townsend who led several MS programs this past year with the Chapter. Attend in-person or watch online. Advance registration required via our website or by calling 800-344-4867 (option 1). January 19, 2012 6 –9 p.m. Sheraton Hotel, Salt Lake City TBD, Boise Online via WebEx The evening also will include election of the Board of Trustees. Board nomination forms, available year round online, must be submitted by December 30, 2011. If you cannot attend but would like to vote by proxy, please complete and return a proxy form from our website by January 6, 2012. TOLL FREE NUMBER 800 344 4867
your neck of the woods There are a lot of good things happening throughout the Chapter. Do you have a news item? Send it to Juliann.Fritz@nmss.org.
BOISE Dance for Awareness The annual Irish dance festival, Boise Feis by the River, included a special dance competition – Dance Strong – in honor of 11-year-old Sydney Renspurger who is a dancer living with MS. The dance category helped to educate the community and show them MS affects people of all ages.
IDAHO FALLS An Awesome Auction David Phillips, the team captain of Team Beaver, held an auction raising $16,000 for his Walk MS team. Not only did Team Beaver raise the most money, they also had the most participants and eye catching orange t-shirts at the Idaho Falls walk!
MERIDIAN Society Social A festive fall Family Night was held at Linder Farms in October. More than 100 people living with or impacted by MS turned out to have fun in the maze, pick pumpkins and get to know one another, as well as meet the Chapter’s new Programs & Services Director Judy Bishop.
SALT LAKE CITY
Renspurger prepares for Boise Feis
CEDAR CITY Congrats Ruth! Cedar City Mayor Joe Burgess declared September 20, 2011, Ruth Barrow Day. For more than 18 years, Barrow has campaigned for a cure for MS as a Walk MS team captain, top fundraiser and awareness builder. The team surprised her with the welldeserved declaration. 6
Locals in NY Times Abby West, namesake of the Bike MS Utah team Abby’s Avengers, and her son Dr. Timothy West, who was inspired by his mother to become an MS doctor, shared their story in the New York Times magazine’s special insert on MS. The magazine has an estimated readership of more than 4 million. Good Work Michael J. Workman, this year’s “Above and Beyond” award recipient at the Chapter’s 33rd Annual Dinner of Champions, was also highlighted in Utah Business
cureMSutah.org - cureMSidaho.org
magazine’s 2011 Healthcare Heroes for his work as a physical therapist.
Workman with former Utah Jazz Coach Jerry Sloan at the Dinner of Champions Thank You SELs A small celebration was held for the Chapter’s 17 Special Event Leaders who lend their time to help manage the hundreds of volunteers who make all the large events run smoothly. Special thanks to SEL Joe Johnson who also helps out in the office and reaches out to people newly diagnosed with MS. Want to learn more about volunteering? Email GetInvolved@nmss.org.
TOOELE Racing Awareness Race car driver David Peterson, inspired by a friend who has MS, added the MS Community Events logo to his racecar to help raise awareness. This past fall he raced in Utah – Delta, Price, Ephriam, and in Las Vegas. Peterson hopes to compete at tracks in Idaho in the new year. Follow him on Twitter @dpeterson_6.
living with ms
Join the MS Community Whether you have recently been diagnosed with MS or have been living with it for many years, there is a community of people who share your experiences. Are you a part of it? The Utah-Southern Idaho Chapter is here to help you connect whether in person at a Society social, over the phone with a support volunteer, or by providing the information you need to help manage your MS. And, that’s just a start to the many avenues available to get connected.
mental health professionals, and state and local government agencies that provide services to Utah and southern Idaho residents with MS. Self-help Groups – There are regular meetings throughout the Chapter. Learn more on page 5. Trained Professionals – Have an inquiry about FDAapproved treatments, a particular MS symptom or not sure what questions to ask yourself when considering disclosing your MS to your employer? A Society staff member can help.
Educational Programs – Visit our Chapter calendar online to see a list of upcoming programs either locally in town or via webinars and teleconferences. The Society partners with a mix of organizations to help make the latest educational and wellness opportunities available.
Want to get involved more? There are many ways from volunteering, becoming an MS advocate, and spreading MS awareness to hosting a DIY community fundraiser or starting a team for Walk MS or Bike MS.
Community Resources – The Chapter has an extensive list of community resources, including neurologists,
Learn more and join the MS movement today. We are stronger together.
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TOLL FREE NUMBER 800 344 4867
Pediatric MS Studies Receive NIH GRANT
CCSVI studies one-year update
The Society’s network of Pediatric MS Centers has been awarded a five-year grant from the National Institutes of Health to study genetic and environmental risk factors for MS in children with the disease. The study will enroll children and teens with MS and matched controls without MS for a single visit to one of 10 centers around the country – in California, New York, Massachusetts, Alabama, Minnesota, Texas, Pennsylvania and Washington. Four new centers are part of this project in addition to the six created with support from the Society’s Promise: 2010 campaign.
The first-year progress reports from seven Societyfunded studies of CCSVI, or chronic cerebrospinal venous insufficiency, were released July 14, 2011. The research teams report being on track in collecting objective and comprehensive data. The studies were launched with a more than $2.4 million commitment from the MS Society of Canada and the National MS Society.
Here in our chapter, the University of Utah was selected by the Society to manage the MS Pediatric Data Coordinating and Analysis Center that will study and review data collected from all the Pediatric MS Centers located throughout the country. To learn more about the study including referral information, please email firstname.lastname@example.org or call 415-514-2476. For more information about pediatric MS, visit nationalMSsociety.org/pediatricMS.
pregnancy and MS
The research teams have recruited a broad spectrum of people with and without MS. Already more than 486 people have been scanned using various imaging technologies. Only by refining imaging methods can investigators more reliably validate if a person actually has CCSVI and better understand its relationship to the MS disease process. The full results, to be released after completion, will help guide future steps, including the development of clinical trials to test whether treating CCSVI is safe and effective for people with MS. In the meantime, several of the teams will present preliminary results at medical meetings later this year. To read more about the studies and to get the news of results, visit nationalMSsociety.org/ccsvi.
Research continues to confirm it’s OK to mix pregnancy and MS.
Clinical trials update
A study published online in Annals of Neurology June 27, 2011, compared 432 births to women with MS and 2,975 births to women without MS, confirming previous findings that, overall, the women with MS had normal pregnancies. The mean birth weight and gestational age of babies did not differ and women with MS were not at greater risk of adverse deliveries, including Caesarean sections.
It features 130 studies that are in progress or recently completed. These cover neuro-protective agents; symptom medications; rehabilitation interventions such as cycling for improving MS-related depression, mobility and cognitive function; and more.
It was the first study in which researchers were able to control for other factors that could affect outcomes, such as disability levels, obstetrical history and body mass index. 8
The Society’s annual list of clinical trials in MS is now available online at nationalMSsociety.org/clinicaltrials.
More than 52,000 volunteers have participated or are currently participating in these studies. Their participation—and yours—makes it possible to look forward to new therapies for MS.
cureMSutah.org - cureMSidaho.org
SUPPORTING THE MISSION
shine: Be an MS Awareness Star! Throughout Idaho and Utah people are building awareness about MS. The Chapter wants to hear all about it and shout your praises for making a difference and helping to educate the community about the MS Movement. Please share your activity, as each quarter an MS Awareness Star will be highlighted for outstanding awareness building efforts. Activities can be a mix of things from wearing MS event t-shirts as a group, hosting an information table, meeting with legislative officials, having a fundraiser, sharing your story with a local club or using a creative outlet to tell the community what MS means to you. It all helps to get people involved, to learn more and to understand the impact of MS.
Make sure to send a brief description that includes who was involved (it can be one person or a group) and a photo, if possible. The event must have happened within three months of the deadlines listed below. The selected activity will be highlighted in the MSConnection and our website. Send the information to Juliann.Fritz@nmss.org (or via mail to the address on back of the MSConnection) by the following dates: January 2, April 2 , July 9, September 4. * The activity must have taken place within the three months prior to the date noted. There is a star in all of us helping to shed a light on MS awareness. Let’s shine!
Walk MS: Crazy About Stomping MS This past fall the Chapter had five Walks in five weeks with more than 1,200 people walking strong!
and crew in Ogden and her younger sister, Kaitlyn, leading teammates in St. George.
David Elgan and his team the Magic Valley Crazy Bunch came to Walk MS Twin Falls with a mission to raise awareness, funds, and to have fun. One of the largest teams there, they boldly made a statement dressed head to toe in orange and black, including fuzzy crocheted striped leg warmers. The team gathered in honor of Elgan, who was diagnosed with MS in 2010. They raised more than $1,400 and won the team t-shirt contest. This group of close and as they say “crazy” friends made a memorable impact their first time walking.
“Participating in the walk means to me that I can conquer MS and show the world that I am not going to let a little thing like MS slow me down,” said Tracy. “I love participating in the walk to see all the supporters that come or the others like myself conquering the disease.”
Holly Tracy, diagnosed in 2009 at the age of 22, decided she was going to conquer all of the 2011 Walk MS events in Utah. One problem, two were on the same day at opposite ends of the state. Her team, the Monster Stompers, didn’t miss a step. All attended Salt Lake City’s in April and they divided and overcame as a team in September with Tracy
What’s your Walk MS story? Send it to Courtney. Frost@nmss.org.
CongratsWalkMS2011 The Chapter’s seven Walk MS events, including Boise and Salt Lake City in April, raised more than $450,000. Thank you for making strides for a world free of MS!
TOLL FREE NUMBER 800 344 4867
Up-to-date FAQs on the Affordable Care Act To help people with MS understand the Patient Protection and Affordable Care Act, or ACA, signed into law March 2010, the Society regularly updates Frequently Asked Questions on its website at nationalMSsociety.org/ACAFAQ. On this page, people can find answers to questions like: What if I am about to lose my COBRA coverage? Can children with pre-existing conditions get coverage? Does the law limit lifetime or annual caps on individual coverage? What are “Health Insurance Exchanges”? Can private insurance companies cancel my policy? What about long-term care? When will the “donut hole” in Medicare Part D phase out? The FAQs also explore the regulations pertaining to the ACA provisions, as well as legal challenges the ACA faces. In addition, there are many links to fact sheets and useful websites that provide more in-depth information on specific issues. As various provisions of the ACA kick in over the next few years, the Society will continue providing up-to-date information and links.
New ADA Rules More than 20 years after the enactment of the Americans with Disabilities Act (ADA), noteworthy changes went into effect March 2011. These demonstrate a continued commitment to realizing the full potential of the ADA and to properly enforcing civil rights of people living with disabilities. The definition of “disability” had been selectively narrowed over the years. Now, the Equal Employment Opportunity Commission’s new regulation is clear. Disability is defined as a physical or mental impairment that substantially limits one or more major life activities, regardless if the disability is in remission. Multiple sclerosis will almost always meet the “disability” criteria because MS limits a major life activity (namely, neurological function). The revised regulations also adopt the 2010 Standards for Accessible Design, setting minimum requirements for new construction or alterations of facilities of some 80,000 state and local governments and of more than seven million public places, including stores, restaurants, hotels, malls, libraries, museums, sports arenas, theaters, medical offices, polling places and emergency preparedness centers. Learn more at ada.gov. Also visit the ADA National Network at adata.org or call 800-949-4232 for training on how to implement the ADA in our area.
MEMORIALS – Memorials and Tributes are a great way to honor a loved one. Carleen Astle Leslie Field Brynn Barton Jeff & Debbie Barton Family and Friends Robert Lester Brown Carollyn Daye Bonnie Rockwood Diane Shupe
Luacine Bunnell Ralph & Ann Angerbauer Richard & Ruth Belliston David & Judy Dunford Janet Olsen Diederich Paul Schneiter Barbara F. Woody Mark Empey Fisher Ann Bjorklund
cureMSutah.org - cureMSidaho.org
Donna Harwood Ann Peterson Richard Kimball Lauri Franks Mr. & Mrs. Ezekiel R. Dumke Jr. Jerry Luff Chris Timothy Gloria Burgess Salladay Mark & Juliana Lliteras
The Balloon Man and More and making phone calls. He willingly did any task or project that he could.
Volunteer Gary Shelton doesn’t let MS slow him down.
Walk MS was the first event Shelton “fell in love with.” With three years of working at the Utah State Fair blowing up balloons under his belt, he became the Walk MS balloon man, blowing up hundreds of balloons at the event. Shelton also got involved with Bike MS and has been managing bike lock-up ever since. “It’s just great seeing the same people every year,” he said. That’s just the tip of the iceberg of why he lends his support.
Chances are you have met Gary Shelton. As a Society When not volunteering, Shelton enjoys riding his volunteer for more than two decades, Shelton has bike, working on cars, and spending time with his six helped out in the office, at special events, and in the grandchildren. He also went skydiving for the first time two years ago and can’t wait to do it again. “I’m community. not going to let MS stop me,” he said. Shelton is a great He was diagnosed with MS in January 1989 while example of someone who struggles with MS but finds working as a welder. A doctor referred him to the solace in volunteering and connecting with the MS Society, and in February that year he began volunteering community. “You just have to deal with it and move on weekly in the office stuffing envelopes, filing papers, with life.”
Support the mission year-end giving
Idaho: Do you love volunteering and want to do more? Are you able to help out at multiple special events and are talented at leading people? You could be a Special Event Leader!
Did you know 87 cents of every dollar donated to the Chapter goes to support the mission? And those that give more than $1,000 annually become part of the prestigious Golden Circle donor group.
Utah: The Women on the Move Champagne Luncheon & Fashion Show is on February 25 and is in need of volunteers to help with set-up, registration, raffle tickets and more.
By making a year-end gift, you can help the Society continue to provide programs and services all year long to thousands of people living with MS in addition to helping fund research that is so vitally important.
BOISE & SALT LAKE CITY: Join us and learn more at the Volunteer Socials in Salt Lake City (January 10) and Boise (January 26).
Please consider making your tax-deductible year-end gift today. Donate online or mail your check to the address on the back cover of the MSConnection.
Contact GetInvolved@nmss.org today!
TOLL FREE NUMBER 800 344 4867
6364 S. Highland Drive, Suite 101 Salt Lake City, UT 84121
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calendar @ A Glance New programs are always being added and many require advance registration. Please check online (cureMSutah.org or cureMSidaho.org) or call 800-344-4867 for more information and to RSVP. December 14 National MS Society Night at Zoolights, SLC January 10 Volunteer Social, SLC 12 Extra Gentle Yoga for People with MS, Boise 19 Annual Meeting, SLC , Boise & online 25 Team Captain Kick Off, Boise 26 Volunteer Social, Boise 26 Traveling: Tips for Those with Disability, SLC
February 4 Team Captain Kick Off, SLC 14 Under the Rotunda, SLC & Boise 23 Balance Techniques for a Better Active Life with MS, SLC 25 Women on the Move Luncheon, SLC March 11-18 MS Awareness Week 29 Fighting Fatigue, SLC April 21 Walk MS Boise 26 Improving Quality of Life in MS, SLC
Walk MS SLC * Additional Walk MS events for the year TBA
may TBD Research Symposium 17 MS & Mobility Adaptive Devices, SLC ongoing M, W, F WRAP MS Exercise Group, University of Utah T MS Exercise Group, Orem Sports Medicine T, TH MS Aquatics Class, West Boise YMCA