1 Winter 2022Winter 2022 Rejoice in Hope HopeKids families share their Christmas hopes Week of Hope provides families with much needed escape and excitement HopeNotes MagazineHopeNotes Magazine Meet SiblingsMeet Siblings Donovan & LeviDonovan & Levi2 Contents Volume 5, Issue 4 Winter 2022 Features 4 Hope for Christmas 6 Week of Hope 7 Watch the Week of Hope Video 8 Program Partners 10 Get Involved 11 Connect With Us On the Cover Levi, Donovan’s younger brother, enjoys being the jokester of the family. He collects vinyl records and cassette tapes and also loves going to car shows. Donovan was diagnosed with Duchenne muscular dystrophy but hasn’t let that stop him from pursing his graduate degree at the University of Illinois. His hobbies range from drones and 3D printing to video games and watching football. Donovan’s family joined HopeKids in September 2012, and has attended nearly 140 events since! Together, their favorite events are Minnesota Wild and Twins games because they love rooting for their home teams. The Cookies with Santa event, pictured with Levi on the cover, always makes the top of their list because “who doesn’t want to see Santa!” “HopeKids has allowed us to connect with other families and make some lasting friendships! All events are a blast because they give us a chance to hang out as a family and just enjoy our time together.” - Jenny, Donovan and Levi’s mom3 4 Hope for ChristmasHope for Christmas families share their greatest hopes for the holiday season 6 Week of HopeWeek of Hope families across chapters experience the trip of a lifetime Program PartnersProgram Partners creative events families have on their calendar 84 “I just want my son to live his very best life. I also don’t want him to experience any discrimination or mistreatment because of his conditions. If I were being completely unreasonable, I would wish that his medical trauma is over.” -Rhiannon, Colorado What is your hope for Christmas? HopeKids families share their greatest hopes for the holiday season. “I’m praying for a drug that will help with my daughters cystic fibrosis mutations.” - Lindsay, Arizona “For our little Liam to be able to be around family his first Christmas.” - Grace, Minnesota “Better access to quality care, especially for those suffering from a rare disease.” - Melissa, North Texas “Keegan’s hope for the new year is that he stays well and is able to be around his HopeKids family.” - Wilson family, Middle Tennessee “Long term, get off our g-tube. Short term, quiet time with family, a chance to take a break from appointments and just be in the moment and season. I secretly would love a white Christmas.” - Keven, Kansas City “I hope that my son gets his call for his heart transplant!” - Marcia, Minnesota “To be able to travel one day without oxygen supplies and having to plan where the nearest children’s hospital is.” - Keven, Kansas City “A very happy day with my family. To see my kids happy on Christmas morning with a few gifts. Just to see my kids smile would be amazing. A selfish hope is to be in a house. To not be so stressed all the time because financially I just can’t handle all of this.” - Kandice, Arizona “My son, William, said his greatest hope is to spend a week where he doesn’t have to think about his therapies, treatments, anything to do with cystic fibrosis. He said he wants to just be himself. It is my wish that he continues to live his best life. Filled with all of the adventures he dreams of. Watching him experience different things and getting enjoyment makes my whole world go round. I feel incredibly blessed to be his mom and advocate. To watch him grow through his journey and path that God has put before him.” - Heather, Colorado55 What is your hope for Christmas? HopeKids families share their greatest hopes for the holiday season. “I hope my seven-year-old, Noah, can beat cancer for the second time and get a chance to grow up.” - Martha, Middle Tennessee “Our family hopes for a ‘normal’ day. A day that we don’t have to do twice daily chemo. A day for my baby to be a baby, and my teen to be a teen. A day filled with so much fun all of our fears and anxiety seem to be mute.” - Danette, Colorado “That my daughter will be able to talk one day.” - Rachel, North Texas “My biggest hope for the holidays is to know my children are happy, healthy, and not in pain. A year with no doctor visits every week or hospitalizations. I just want one solid, good year.” - Maci, Kansas City “To see the beautiful smiles on my children the morning of Christmas opening gifts instead of being in the hospital. Actually waking up in a warm bed laying with my little one and to be stress-free and financially stable.” - Rudy & Marissa, Arizona “Health. I just want my son to be lucky and not get every illness that is going around right now.” - Christina, Minnesota “My hope is after two relapses this year my son, Penn, can move on to getting his CAR-T cell therapy followed by his bone marrow transplant. My prayer is that they’re both successful and he can be cancer free. I want him to live a long, happy, and healthy life with his brother Pryce who is also his donor!” - Jess, Middle Tennessee “Maggie has surgery on December 21st, so my hope is that it helps her and gives her a much better quality of life. We will be in the hospital for Christmas, but if it helps her not be in debilitating pain daily, it will be worth it.” - Danette, Colorado “That I can find the help my son needs to get his mental health evened out. He’s been through so much and has come so far, this new battle is definitely the hardest!” - Christina, Minnesota “To live a life never worrying about cancer again.” - Samantha, Colorado “A cure.” -A hope from HopeKids parents across chapters “Better education system for kids with special needs!” -Nansi, North Texas66 In early fall, 18 HopeKids families across all six chapters were invited to spend a week in Montana at Flathead Lake Lodge. Truly the trip of a lifetime, families experienced life on the ranch to the fullest--riding horses, jumping off the dock into the lake and even taking a ride on a seaplane. FLATHEAD LAKE LODGE a week of hope7 This past week, I saw the light come back into [my son’s] eyes for the first time in a long time. I saw his passion and his spark to start living again, without constant fear. I saw Evan just able to be Evan again. A gift that we received that could never be replaced. My mama heart is melting. Can’t wait to watch this guy’s future soar.” - Kiana, Evan’s mom “ ” Week of Hope has become an annual tradition and highly coveted trip for HopeKids families to visit Flathead Lake Lodge, a family-owned and operated dude ranch in northwest Montana. HopeKids families spent a week, all expenses paid, exploring the 2,000 acres by riding horses; making arts and crafts; sailing on the lake; making s’mores; clay shooting; laser tag; mountain biking; hiking; fishing; water sports; swimming; and games. They were also treated to the most delicious meals! Week of Hope is about bringing families together who share the common journey of having a child with a life-threatening medical condition to form community and new friendships. Struggles were shared, tears were shed and hugs were abundant, but more importantly there were lots of laughs and smiles. Kids got to try things that they would never have had the chance to do, and parents stood by in awe watching them do things they never imagined they would or even could! It began with Week of Hope but ended with memories and friendships that will last a lifetime. We are so grateful to the Flathead Lake Lodge team for inviting us back year-after-year and to all the donors who make this truly magical week possible! Wat ch to see the week in actio n!888 SPECIAL THANKS TO OUR PROGRAM PARTNERS 613 events were provided by 211 different program partners in September, October and November. These generous people, companies and organizations helped provide hope through an ongoing calendar of events. If you’re interested in becoming a program partner, please contact your local chapter. Take a look at the September, October and November HopeDay, HopeCommunity and Virtual Program Partners. Virtual Brice Harney Hope(less) Misty Rose Gold The Marriage and Family Clinic Arizona Allied Global Marketing Amber Alexander Aqua-Tots Arizona Cardinals Arizona Coyotes Arizona Diamondbacks Arizona Historical Society Arizona Pilot’s Association Ballet Arizona Butterfly Wonderland Camelback Inn Christ Church of the Valley Christian Brothers Automotive Colten Cowell Foundation Desert Diamond Arena Desert Stages Theatre Dionisia Delacerda East Valley Children’s Theatre eeCPA Frost Communications Full Throttle Ministry Galaxy Theatres Game Day Memories General Mills Gloria Morgan Goldberg Family Foundation Goldfish Swim School iFLY Indianapolis Colts JW Marriott Desert Ridge K2 Adventures Foundation KOMAN Construction, LLC. Lennon Equine Life’s Big Adventures Main Event Majestic Theaters Maricopa County Fair Mesa Community College Theatre and Film Arts Michelle Lucero MMPR Marketing North Valley Symphony Orchestra Olivia Nottoli Pedro Ramirez Roadhouse Cinemas Southwest Wildlife Spotlight Youth Theatre Stand Up Live Tabitha Thoeny Valley Youth Theatre Colorado ACT Colorado Aspen Johnson Autumn Jensen Ballet Melange Beyond the Walls Church Brickfest Live Care Lettters Carolyn Mackey Chase the Music Colorado Kids Ranch Colorado Rockies Colorado Symphony Colton Cowell Foundation Cotrell Printing Denver Museum of Nature & Science Discovery Christian Church DS Environmental Consulting Game Day Memories Kroenke Sports & Entertainment Let’s Roam Mici Handcrafted Italian Peachy Famrs Saunders Construction Speed EFX Kansas City Alldredge Orchard American Royal Bolero Salon Cedar Farms Chuy’s Plaza Dave and Busters Donutology Dozer Days George Owens Nature Park Heritage Biologics Independence Community Ice Junior League of Kansas City, MO Kansas City Symphony Kansas City Zoo Kauffman Performing Arts KC Air Show KCNRR: Train Ride Level Up: Gaming Main Event Midwest Trust Theater Nascar Rink Ratz Roller Skating RoKC Royals Baseball S&S Stables Sporting KC 9 Starlight The Coterie Theater Topgolf Topeka Zoo & Conservation Center Traveling Turkeys Wonderscope Children’s Museum of Kansas City Middle tennessee Altitude Trampoline Park Colten Cowell Foundation Comfort Connections Converged Technology Donut Distillery Feld Entertainment Franklin Road Academy Grand Ole Opry Lighthouse Immersive Main Event Nashville Children’s Theatre Nashville Fair Nashville Predators Foundation Nashville Sounds Tennessee Titans Community Foundation Third Coast Salt Day Spa Thrivent Topgolf United Special Sportsman Alliance Vanderbilt Athletics WayFM Minnesota Allianz Life Allied Global Marketing Anonymous Berean Baptist Church Colten Cowell Foundation Donatelli’s Ecolab Eden Prairie Community Foundation Elko Speedway Emagine Lakeville Emagine Rogers Emagine White Bear Fastbreak Foundation Game Day Memories Gilda’s Club Twin Cities Gopher Sports Properties Jimmy John’s Joe and Jinger Birkholz KTIS Lisa Byington Magellan Health Mathew Dumba Mats Zuccarello Merlin’s Magic Wand Minnesota Gopher Football Minnesota Timberwolves & Lynx Minnesota Twins Community Fund Minnesota Wild Minnesota Wild Foundation Minnesota Zoo Northrop Pediatric Home Service Picnics with a Pup Robert Thomas Homes RT Urban St. Croix Ballet Stages Theatre Company Steve and Michelle Anderson Sue LaTendresse Target Center The Rochester Civic Theatre Tradition Companies Tradition Wealth Management Twin Cities Harvest Festival & Maze University of Northwestern Theatre Uplifting Athletes Winnesota Regional Transportation Ziggy’s Art Bus north texas Alamo Drafthouse AT&T Performing Arts Center Bank of America Chamberlain Ballet Chicken N Pickle Colton Cowell Foundation Cotton Patch Cafe Dallas Children’s Theater Dallas Mavericks Foundation Dallas Stars Foundation, Inc. Elaine and Steve Hull Flexential Good Shepherd Episcopal Church and School Helping on Horseback Jake Oettinger Jason Dagelewicz JMEG, LP Joe Hoffman Kandle Ynostrosa Lantower Residential Maxim Healthcare Services Merlin’s Magic Wand Milestone Church Mountain Lion Aviation Nasher Sculpture Center Shaun Asheim Switchlife Texans Credit Union Texas Rangers The Leaders Institute Topgolf United Special Sportsman Alliance Urban Air Trampoline & Adventure Park White’s Chapel United Methodist Church World Wide Technologies a noteof thanks Thank you for your support in 2022, a year we will remember as full of hope. It’s the hours you volunteer, resources you share, events you host and donations you make that continually provide hope and we couldn’t be more grateful.Next >