Editor note: Please read to the end of this news letter for a very exciting opportunity to win a POLARIS RANGER 500.
UNDERSTANDING OUR NAME CHANGE
It’s been just over two years since the decision was made to create an umbrella organization that would cover our growing list of services to the stroke community. That organization was named United Stroke Alliance. The name doesn’t change anything about Retreat & Refresh Stroke Camp, its name or logo. It doesn’t change Strike Out Stroke, its name, or logo. It now encompasses our newest addition, The Booster Box, and soon the expanding Youth Education on Stroke (YES) program. As we grew, the name change was necessary to be able to encompass all of our programs. Same services, same friendly staff, just a new name.
MEDTRONIC GLOBAL CHAMPIONS ACCEPTING APPLICATIONS
Encourage patient-runners to apply and inspire others through their grit and determination
Medtronic Global Champions is a program that recognizes athletes from around the world who have persevered through life-changing health conditions and have returned to active life with the help of medical technology. These remarkable individuals and their stories of grit, determination and triumph serve as an inspiration to others with life altering health conditions. Up to 20 individuals will be selected for the 2018 Global Champions team. Selected honorees receive a paid entry for themselves and a running partner to the Medtronic Twin Cities Marathon or the Medtronic TC 10 Mile and a complimentary travel package that includes airfare, accommodations, and a host of VIP events.
Global Champion athletes must have a medical device, therapy, or procedure to treat heart disease, stroke, diabetes, cancer, chronic pain, spinal or neurological disorders, obesity, or gastrointestinal and urological disorders. There is no restriction on the manufacturer of these devices, therapies, or procedures. Certain conditions may apply, and applicants must certify that they have discussed race participation with their physician.
If you know someone who lives an active life and is benefiting from a medical device, procedure, or therapy, encourage them to apply to be a Medtronic Global Champion at www.medtronic.com/GlobalChampions.
Applications will be accepted through April 27, 2018.
See www.medtronic.com/globalchampions/officialrules for more details.
New Stroke Camp Registration Software
We are happy to announce a new software program that will make registration easier as well as provide more detailed reports for our Stroke Camps. As with anything new, we expect there will be a kink or two for us to work on, it’s the nature of change. For those who prefer paper registration, we will gladly accommodate you, no worries.
Having trouble registering,? Just call Kerri Rae 309-688-5450.
For those Sponsors that are interested in hosting a Can-a-Thon at their stroke camps again this year, Retreat & Refresh Stroke Camp will assist in coordinating that effort.
In 2017 we collected almost a ton of food that went to local food pantries, we hope to exceed that amount in 2018. Campers and volunteers will get details in their camp welcome packets.
Peoria, Illinois Stroke Survivors
this opportunity is for you!
Stronger Than a Stroke
United Stroke Alliance has partnered with Anytime Fitness Peoria to help stroke survivors and caregivers connect and thrive through fitness. Effective March 20, 2018, Anytime Fitness, North Peoria, is offering classes for stroke survivors and caregivers at NO COST. This weekly opportunity from 12-Noon—1:00 pm will be available free going forward. Anytime Fitness will be offering this weekly coaching and support led by their professional coaches/trainers. Come check out the possibilities.
If you want to become a member, they are offering an affordable membership rate for local survivors and caregivers: For more information on membership call Matt at 309-966-4217.
One-Time Enrollment Fee $25
Annual Club Enhancement Fee $25
Anytime Fitness Peoria is located at 1320 W. Commerce Dr., Peoria, IL 61615, Off North Knoxville, behind Kroger and CVS.
UPCOMING 2018 CAMPS
5/4—5/6 Camp Courageous; Monticello, IA | Sponsored by: Mercy Medical Center and University of Iowa Hospitals & Clinics
5/18—5/20 Chapel Rock Camp; Prescott, AZ | Sponsored by: Dignity Health
6/1—6/3 Purdue University; West Lafayette, IN | Sponsored by: Franciscan Health Foundation
6/8—6/10 Salt Fork Lodge & Resort; Lore City, OH | Sponsored by: OhioHealth
6/8—6/10 Fellowship Deaconry Ministries; Basking Ridge, NJ | Sponsored by: Overlook Foundation and Atlantic Health Systems
6/15—6/17 Crestfield Conference Center; Slippery Rock, PA | Sponsored by: UPMC Rehabilitation and Stroke Institutes
6/22—6/24 Warren Conference Center; Ashland, MA | Sponsored by: Brigham & Women’s Hospital
7/5—7/8 Lutheran Outdoor Ministries Center (Family Camp); Oregon, IL | Sponsored by: Retreat & Refresh Stroke Camp
7/13—7/15 Elmhurst College; Elmhurst, IL | Sponsored by: Amita Health Neurosciences Institute
7/20—7/22 Lutheran Outdoor Ministries Center; Oregon, IL | Sponsored by: Mercyhealth, Illinois
Neurological Institute, OSF Saint Anthony Medical Center, Swedish American, VanMatre HealthSouth
7/30—8/1 Chapel Rock Camp; Prescott, AZ | Sponsored by: Power of the Purse, Dignity Health, HealthSouth East Valley Rehabilitation Hospital
8/3—8/5 Pilgrim Park Camp; Princeton, IL | Sponsored by: Illinois Neurological Institute at OSF
8/10—8/12 Highlands Retreat Center; Allenspark, CO | Sponsored by: Cheyenne Regional Medical Center
8/10—8/12 Michindoh Conference Center; Hillsdale, MI | Sponsored by: St. Vincent Mercy Medical Center**
8/24—8/26 Lutheran Outdoor Ministries Center; Oregon, IL | Sponsored by: Mercyhealth, IllinoisNeurological Institute, OSF Saint Anthony Medical Center, Swedish American, VanMatre HealthSouth
8/24—8/26 Faholo Conference Center; Grass Lake, MI | Sponsored by: Henry Ford Health System, DeMaria
8/24—8/26 Carol Joy Holling Center; Ashland, NE | Sponsored by: Lincoln Stroke Partnership, Bryan Health, Madonna Rehabilitation Hospitals, St. Elizabeth
9/7—9/9 Lake Junaluska Conference Center; Lake Junaluska, NC | Sponsored by: Mission Health
9/7—9/9 Green Lake Conference Center; Green Lake, WI | Sponsored by: UW Health
9/7—9/9 Pilgrim Park Camp; Princeton, IL | Sponsored by: Retreat & Refresh Stroke Camp
9/14—9/16 Airfield Conference Center; Wakefield, VA | Sponsored by: VCU Health
9/14—9/16 Broom Tree Retreat & Conference Center; Irene, SD | Sponsored by: Siouxland Stroke Support Network
9/21—9/23 Waycross Camp & Conference Center; Morgantown, IN | Sponsored by: Franciscan Health –Indianapolis/
9/28—9/30 Cohutta Springs Conference Center; Crandall, GA | Sponsored by: Erlanger Health System, HealthSouth, Siskin Hospital, Chiesi
10/5—10/7 Ceta Canyon Retreat Center; Happy, TX | Sponsored by: Medical Center Health System
10/12—10/14 Rock Creek Resort; Red Lodge, MT | Sponsored by: St. Vincent Healthcare
10/12—10/14 Pleasant Ridge Retreat Center; Marietta, SC | Sponsored by: Greenville Health System**
10/12—10/14 Faholo Conference Center; Grass Lake, MI | Sponsored by: St. Joseph Mercy Oakland**
10/19—10/21 Rock Springs 4-H Center; Junction City, KS | Sponsored by: Kansas Family Stroke Foundation
10/19—10/21 Echo Grove; Leonard, MI | Sponsored by: St. John’s Hospital & Medical Center
10/26—10/28 YMCA of the Rockies; Estes Park, CO | Sponsored by: Good Samaritan Medical Center**
11/19—10/21 The Resort on Mt. Charleston; Mt. Charleston, NV | Sponsored by: St. Rose Dominican (Dignity Health)**
**Pending Sponsorship Confirmation
2019 RETREAT & REFRESH STROKE CAMP CRUISE
Hope to see you for our Tropical Island Getaway theme!
Sail Dates: March 09-March 14, 2019
Is it adventure you seek, or a restful retreat from life on land?
Royal Caribbean's Independence of the Seas® is home to an array of innovations that give you whatever type of vacation you desire. But this isn't just a cruise ship. It's an adventure that sails way ahead of the curve. Surfing. Rock climbing wall. Ice-skating. Mini-golf. Outdoor Movies.
Come seek all this and more on Independence of the Seas - your biggest vacation yet. Ship’s registry: The Bahamas.
Itinerary: Ft. Lauderdale, Fla. - Cruising - Labadee, Haiti, Falmouth, Jamaica - Cruising - Ft. Lauderdale, Fla.
Cruise Only Pricing Per Person based on Double occupancy:
5 night Caribbean cruise Independence of the Seas
Interior $459.00 Ocean $549.00 Balcony $649.00
Category 4V Category 8N Category 6D plus taxes and fees $97.91
A special message from your travel agent: We have confirmed a limited number of accessible cabins and regular cabins in the above categories. Other category cabins are available. Triple and Quad rooms can be booked subject to availability. Contact me soon to reserve your space. Deposit $250.00 per person at confirmation.
For more Information/Reserve contact:
JOHANNA McCARTY, Outside Sales Agent
P.O. Box 625, Charleston, Il. 61920
Phone: 217-532-2847(Available M-F 9AM-5PM)
Arrow Travel is acting as a mere agent in accepting reservations for services not directly supplied by this agency. Traveler assumes full responsibility for verifying documentation required for travel. Arrow Travel and its employees are released from any claim arising from causes not within its control.
SURVIVOR STORY: Featuring Bill
BILL'S UNEXPLAINED STROKE STORY
All his life, Bill has been active. He spent 31 years in the Air Force working in air freight and passenger service before becoming a pastor and working other jobs. With five children and eight grandchildren, there are always activities and chores — from raking the leaves to fixing bicycles to playing a game of basketball.
There were no signs of illness — aside from a little fatigue —
before he collapsed one morning with a massive stroke. “No warning whatsoever,” Bill says. “We had been talking, he got up to go to the bathroom and I heard things falling,” remembers Donna,
Bill’s wife of 47 years. “I found him on the floor, unconscious. He couldn’t talk and couldn’t move.”
ATRIAL FIBRILLATION AND STROKE
After Bill was stabilized at the hospital, his medical team set out to determine what caused the stroke. “One of the main etiologies for stroke is atrial fibrillation,” says Gary Boliek, M.D., a cardiologist at Baptist Health in Lexington, KY. “Patients are sometimes symptomatic in that they may feel their heart racing irregularly. But many times, atrial fibrillation is silent.”
Atrial fibrillation (AFib) is a common condition in which the upper chambers of the heart, or atria, beat very fast and irregularly so the heart can’t pump blood effectively to the rest of the body. AFib increases the risk of stroke more than 5 times,1 but often goes undetected since it can happen infrequently or without symptoms.
A heart monitor could determine if Bill had a heart arrhythmia. There are many types of heart monitors and they vary by how long they can be used and how information is captured. One type of monitor captures heart activity for up to two days. Another can be worn for up to 30 days.
A large study showed that for many patients who’ve experienced an unexplained stroke, known as a cryptogenic stroke, it could take more than 80 days for AFib to appear because the episodes happen infrequently, often without symptoms.2
REVEAL LINQ ICM
Bill’s doctor decided on the Reveal LINQ Insertable Cardiac Monitoring (ICM) System, a heart monitor that watches for
problems 24 hours a day, seven days a week, for up to three years.
A miniaturized monitor, it is one-third the size of a AAA battery and is implanted under the skin. Data from the device is automatically sent to the doctor. It took eight months before Bill experienced another episode, and the Reveal LINQ ICM detected atrial fibrillation.
With this information, Bill’s doctor prescribed blood thinners to help prevent AFib from causing another stroke. “If we had not implanted the continuous monitor, we likely would not have detected his atrial fibrillation,” says Curtis Given, M.D., a neurosurgeon at Baptist Health. “Without the [monitor], we might have sent him home on aspirin, for example, and that would not have protected him from future stroke.”
Since his stroke, Bill has celebrated his 80th birthday and is back to helping Donna around the house with vacuuming, unloading the dishwasher, doing laundry, raking the yard and fixing household items. “He still does most everything he ever did, sometimes more,” says Donna. She also knows the importance of a rapid response. “Whether you know it’s a stroke or not, get help fast,” she says.
Bill is happy to be back to his old self. “I just couldn’t imagine not doing the things I’ve always done, you know?” he says. “Now, I can pretty much do what I want to do or what I have to do.”
To learn more about cardiac monitoring for unexplained stroke, visit Medtronic.com/heartmonitors.
This story reflects one person's experience. Not every person will receive the same results. Talk to your doctor about your treatment options.
1 Wolf PA, Abbott RD, Kannel WB. Atrial fibrillation as an independent risk factor for stroke. The Framingham Study. Stroke. August 1991;22
2 Sanna T, Diener HC. Passman RS. Et al. Cryptogenic Stroke and Underlying Atrial Fibrillation (CRYSTAL AF). N Engl J Med. June 26, 2014;370 (26):2478-2486.
NOTES FROM THE CEO
Larry Schaer | CEO United Stroke Alliance
Over the last 10 years I have had the unique pleasure in meeting great stroke survivors, caregivers, family members, volunteers, and sponsors all over the country. In come cases, it is meeting with interested people who are attracted to the idea of doing a Stroke Camp, a Strike Out Stroke event, or our Youth Education on Stroke program.
I would like to take this opportunity to introduce you to the folks in North East Kansas. It began when one Topeka stroke survivor participated in the Lincoln, NE stroke camp and wanted to have one in Topeka, KS. I met with the folks from Kansas Rehabilitation Hospital and presented the idea.
“After we first met, the thought of raising $25,000 seemed like trying to climb Mount Everest. I was inspired by the vision of changing the lives of stroke survivors and caregivers and being a part of their journey,” said Lisa Rundell, Director of Therapy Operations at Kansas Rehabilitation Hospital. Although everyone was excited about the idea, it seemed like a big challenge to find the funds to sponsor a camp.
After some discussion the first step was to obtain funding through their first Trivia Night held in Topeka, KS. It provided a significant portion of the sponsorship fee for their first Stroke Camp. With additional local sponsors, the first North East Kansas Stroke Camp was conducted in October 2017. From corny skits to Saturday night karaoke, participants left with a feeling of renewal and inspiration to do it again.
“Having a network of survivors, caregivers, and volunteers that have had a chance to be impacted by the camp firsthand has significantly increased the enthusiasm around continued growth”, according to Barry Muninger, Director of Marketing Operations.
In February, this group organized their 2nd annual Trivia Night for additional stroke awareness programs. In addition, Youth Education on Stroke programs are being planned for the spring as well as an established website and foundation. In a matter of months, this group is changing the landscape of stroke awareness and support for stroke survivors, caregivers and family members.
As a result of one stroke survivor wanting a local camp in Topeka, the community is now seeing value of people working together to improve the quality of life.
NATIONAL BOARD OF DIRECTORS –MARK BELK
Introduction | Getting to know your Board Of Directors
United Stroke Alliance would like to introduce one of our Board of Directors, Mark Belk. Our first contact with Mark was in 2014 when he and his wife, Shannon, a stroke survivor, participated in a Retreat & Refresh Stroke Camp in Green Lake, WI. From that point our relationship has continuously grown from
campers to a priceless friendship.
The following year Mark, Shannon, and Joe Romenesko, another stroke survivor, organized and supported the first NE Wisconsin stroke camp. In 2016, Mark and Shannon moved to Omaha, NE where Shannon continues her rehabilitation at the new Madonna Rehabilitation facility.
In the spring of 2017, Mark was elected to the National Board of Directors of United Stroke Alliance. Not only does Mark bring the perspective of a caregiver of a stroke survivor, he has a rich background in information technology, sales, marketing, and general management. His proven leadership and strategic thinking has been demonstrated through his career in working with major companies across the country.
His 25+ year career path has included Vice President- IT for Oshkosh Corporation, Vice President/Global Enterprise Technology and Project Management for Zimmer, Inc, Vice President/Global Information Services for Avnet, Inc., Vice President and
Business Information Officer for Armour Eckrich Meats, Inc; Vice President/Enterprise Center of Expertise for ConAgra Foods,
Inc., as well as other corporations. Mark holds a BS degree in Business (Marketing) and a Master’s Degree in Business Administration (MBA) from Radford University in Radford, Virginia.
United Stroke Alliance is privileged to have Mark’s business expertise and personal experience as a caregiver on the Board of Directors. We look forward to working with Mark in developing and growing United Stroke Alliance into a long term global organization providing community stroke awareness and supporting stroke survivors, caregivers, and their families.
POLARIS RANGER 500 RAFFLE (VALUE $9,000)
Benefitting United Stroke Alliance
PROVIDED BY LEONE POLARIS, PERU, IL
ALTERNATE PRIZE ($8,000 CASH)
|Color may vary|
Tickets: $100 each
Drawing to be held when the sale of 200 tickets is complete. Do not have to be present to win.
Raffle License # R-57-18 Peoria County Illinois
To purchase your ticket, please call 309-688-5450