Fall/Winter 2013 www.annecarlsen.org
For supporters of the mission and vision of the Anne Carlsen Center
Learn how students transform the vegetables they grow into a mouthwatering masterpiece Page 8
Meet a 7-year-old boy reaping the rewards of his familyâ€™s determination and love Page 10
Grand Forks family is thankful for Anne Carlsen Centerâ€™s guidance on journey from heartache to hope Page 4
Full House: laughter, excitement, and the aroma of freshlypopped popcorn fill the theater.
Apple Distinguished Educator Mark Coppin frames a scene in the TechnoCamp studio.
“Can I get an autograph?!” Adair arrives in style at the movie premiere.
estled on the beautiful shores of Lake Isabel, TechnoCamp is a summer adventure like no other. For one incredible week, teens with disabilities share in all the traditional activities you’d expect at camp — from roasting marshmallows to cruising around on the pontoon — with one notable exception this year: the amazing hands-on experience of producing their very own videos! Campers were the ones writing the script, sitting in the director’s chair, and starring in the production. They used assistive technology to capture the scenes and edit them together. It was a glamorous premiere worthy of Tinseltown! The campers arrived at the theater entrance in true Hollywood fashion, waving to an adoring crowd from the comfort of their golf-cart limousine. As the stars struck poses, there was a flurry of camera flashes. With the popcorn popped, the awards polished, and the curtains drawn, the scene was set for another unforgettable experience at TechnoCamp.
Cyndal enjoys the warm reception during the TechnoCamp movie premiere.
Sun sets over another fun-filled day at Lake Isabel.
This year donors responded generously to our Summer Camp Appeal with more than $14,000 in gifts. Thank you to all who support this one-of-a-kind adventure. You are helping create summer memories that will last a lifetime! For more information on TechnoCamp — and to see the amazing videos our campers created — visit www.annecarlsen.org/technocamp-2013/
One look says it all: Adam and his fellow campers will never forget the time they shared at TechnoCamp.
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Equipping Families for Success A few months ago, I had the pleasure of participating in one of rural America’s family traditions: a barn dance. The setting was a family farmstead near Riverdale, N.D.—a McLean County town near Lake Sakakawea. My wife, Pat, and I enjoyed meeting the other attendees that evening. As it turns out, many of them had a connection at some point in their lives to the Anne Carlsen Center. One had interned at the Center as part of her nursing studies; another had a nephew who had received our residential services. There were several others who shared their connections and stories, each recalling memories of the Center with fondness. The widespread impact of the Anne Carlsen Center was evident at this small gathering in rural North Dakota … as it is in countless other places. The Center has touched many lives since our Jamestown campus was established in 1941. And, with the expansion of Community Based Services in recent years (in communities large and small), the number of families helped by the Center’s expertise has grown exponentially.
rand openings over the summer unveiled a new chapter for Community Based Services in the Fargo and Grand Forks areas. The Anne Carlsen Center (ACC) has been providing Community Based Services in Grand Forks since 2008 and in Fargo since 2009. Now, in both cities, the offices for Early Intervention, In-Home Supports, Day Supports and Autism Services are together under one roof, facilitating even greater efficiency and collaboration.
Throughout this edition of The Ambassador, we have the privilege of sharing with you, our faithful donors, stories of North Dakota families empowered by the services we provide. Beginning on page 4, you’ll find the Hutton family’s story. When their first child, Mason, was born last year—delivered by emergency C-section—he wasn’t breathing. An MRI revealed bi-lateral brain damage from the lack of oxygen. This Grand Forks family was put in touch with our Early Intervention Program, which provided tools, training and support in their home. Just wait until you see what this amazing little boy is capable of now! Mason Hutton
You’ll meet the Jorgenson family of Jamestown on pages 10–11. The Jorgensons adopted Riley, now 7, as an infant; not long afterwards, they noticed him falling behind his peers in reaching developmental milestones. Doctors gave them little hope, and the couple feared they might not be able to meet their son’s needs. But when Riley was a toddler, he began spending time with a team of therapists here at the Center on working toward—and reaching!—a variety of important developmental goals. Now this remarkable boy, his parents and “big sis” are doing everything they always dreamed of together as a family. The Anne Carlsen Center is now serving more than 1,400 individuals and their families in nearly every corner of the state. We know how important it is to serve the needs—and listen to the dreams—of every family member. It is deeply satisfying to see families being transformed, as fear and confusion give way to peace and strength. We’re also inspired when families take on leadership roles in their own communities. In Dickinson, the father of an 11-year-old boy on the autism spectrum has been working to increase awareness of autism. To help raise money for summer autism camps in the community, Nicholas Gates and other Dickinson residents have held a benefit golf tournament at the Bully Pulpit Golf Course near Medora every year since 2008. The Anne Carlsen Center is honored to partner with these individuals in their efforts to empower Dickinson-area families impacted by disability. Your generosity reverberates across the state of North Dakota. Whether at a barn dance, on the golf course, or in quiet moments in homes throughout the state, your partnership with the Anne Carlsen Center is felt and appreciated. Your gifts strengthen our families and communities by equipping individuals on their journey toward greater independence and quality of life. This holiday season, we pray that your celebrations with loved ones are filled with joy. As you savor the gift of family, may you be filled with thankfulness for God’s greatest gift of all: His Son. With a grateful heart,
Eric M. Monson Chief Executive Officer Anne Carlsen Center
Matt Beilke shares his inspirational story of achievement.
Although most Community Based Services are provided in the home and throughout the community, these offices serve as bases of operation for staff as well as a convenient place for clients to receive services and participate in group recreation. The Grand Forks office held its open house and ribbon cutting on August 22 at its new location on South Washington Street. The presentation included parent and client testimonials.
Kelly and Chris Hutton shared their appreciation for the early intervention services their son, Mason, is receiving. Mason, who did not have a heartbeat at birth, suffered bi-lateral brain damage. “We struggled a bit, and then we were introduced to the wonderful people here,” said Chris. You can read this family’s inspiring story, beginning on page 4. Attendees also met Kyle Frier of Grand Forks. Over the last four years, the Center has supported Kyle in his job at a Grand Forks laundromat, with routine tasks like paying bills, and in his advocacy work and speaking engagements throughout the community. In Fargo, a July 25th grand opening event at the new office on 30th Avenue South included an open house and ribbon cutting. Matt Beilke, who has benefitted from a variety of ACC services during his life, told attendees about the impact of the support he receives: “I met with the Anne Carlsen Center again as a 20 year old, and they helped me dream about the future … Thanks to the Center, I have achieved many goals I set out for myself.” Matt’s accomplishments include living on his own, getting a job, and being a strong advocate for himself and others with disabilities. Holly Novacek of Fargo spoke about her 4-yearold son, Jacob, who was born with a congenital heart defect. The Early Intervention Program— through routine-based support and therapy in the home—helped ensure her son reached key developmental milestones. “I can’t say enough good things about the early intervention program,” she told attendees. “Jacob starts preschool in the fall and he’s doing well.” The Anne Carlsen Center also has Community Based Services offices in Bismarck, Jamestown and Devils Lake. N e w L o c at i o n s Community Based Services – Fargo: 4152 30th Ave. South, Suite 102 Fargo, ND 58104 701-364-2663 email@example.com
Community Based Services – G r an d For k s : 2016 South Washington St. Grand Forks, ND 58201 701-757-4200 firstname.lastname@example.org
Beneath the Surface Through the years, ACC donors have used mineral rights to make long-lasting impact
n a stuffy conference room in August 2002, members of the Foundation Board of the Anne Carlsen Center for Children studied their enormous accounting binders with intense concentration. Analyzing donation figures from the previous year, the ten leaders of business and finance were preparing to carve out an investment strategy that would foster growth and stability for the expanding organization—a task rendered more difficult in the wake of a brutal stock market downturn. At the bottom of the spreadsheet read the item “Mineral Rights Income.” Next to it, was the corresponding total. Board Member Bob Weiss, a Jamestown native and prominent Community Banker, pondered the modest figure, and turned to his fellow members. “Whatever we do,” he said firmly, “we cannot sell these mineral rights.” “That’s ok, Bob,” Chief Financial Officer Judy Kulla replied. “Your dad told me that a long time ago.” Investing in the future As the chairman of the Anne Carlsen Center Board of Trustees in the 1950s, Herman Weiss recognized that mineral rights donated to the Center from across the Midwest had enormous potential. In 2001, total mineral income received by the Anne Carlsen Center from leases and royalties was $3,342. In 2012 alone, that value had skyrocketed to $586,788. After decades of lethargic growth, the fruits of Herman’s foresight had blossomed. Time, expertise and an expectation of great things to come are fundamental to our mission of nurtur-
ing abilities and changing lives; Herman and Bob understood that those same principles also serve as a winning formula for investing in our future. We caught up with Bob to discuss his family’s legacy of leadership, and how donating mineral rights can be an effective and powerful option in today’s giving environment. Describe the relationship your father shared with the Anne Carlsen Center … as well as his role in acquiring donations of mineral rights. Bob Weiss: My dad was very involved with the Anne Carlsen Center, going back to the 1950s. He was the chairman of the Board, and continued to serve in some capacity for over 40 years. And, of course, he knew Anne personally. I can remember, on a number of occasions, when Anne was over at our house for celebrations and dinner. She was an integral part of my dad’s belief in helping the community. As a local attorney in Jamestown, my father was often asked about worthy causes to support. Many people turned to him for direction in estate planning. A lot of these folks owned mineral rights, and in the early 50s, they were uncertain about how valuable these could be. They wanted them to go to an entity that would be a good steward, and hold them for the long haul in the event that the oil could be recovered. Ranchers and farmers in the Western part of the state learned about the Anne Carlsen Center from my father (and also from the Lawrence Welk Show, since Anne Carlsen was a guest each time she was recognized for a new achievement), and he would encourage them to donate their mineral rights to the Center. Part of the heritage my dad contributed to the Center was to maintain those investments … knowing someday there would be a positive return on them. That’s how it all got started. What does the process look like for those who are interested in donating mineral rights?
Bob Weiss: As part of their estate planning, the benefactor can assign their mineral rights directly to the Anne Carlsen Center through a will. They can also assign them now—for a given period of time, or in perpetuity. The benefactor’s attorney would have the donation recorded on the legal description of the property with that particular county. That way, when someone is looking for an owner of the mineral rights, they can perform a search and contact the Anne Carlsen Center. That helps to transfer that wealth back to a non-profit entity, which makes it a tax-deductible contribution.
Dr. Anne Carlsen’s legacy is the enduring belief in the worth of every individual. Her life exemplified strength and nurturing, advocating for individuals with disabilities, and teaching them how to create their own path towards
What are some specific advantages to donating mineral rights? Bob Weiss: You are giving a future stream of income to the Anne Carlsen Center, rather than cash in the present. It’s a long-lasting impact. And in some cases, there are opportunities for some real future growth. Today, if you’re in the heart of the Bakken, it can be a sizeable opportunity to perform a great service for a wonderful entity like the Anne Carlsen Center. And, of course, it’s all tax-deductible.
To learn more For more information about donating mineral rights and the specific tax advantages, contact Patrick Kirby, ACC’s Chief Development Officer, at 952-237-0836 or Patrick.Kirby@annecenter.org
Just as there are many different ways we serve individuals at the Anne Carlsen Cenetr, there are almost as many methods of giving to support our life-changing mission. For more information on how you can make a planned gift in honor of the individuals we serve, contact Patrick Kirby, Chief Development Officer at 701-952-5108 or at email@example.com. • annecarlsen.org/how-to-help
Donors Provide the Gift of Learning We are thankful for the generous way friends of the Anne Carlsen Center responded to our Back to School Appeal. Your gifts totaling $17,700 will help continue the outstanding care and schooling that children like Bria enjoy.
life to the fullest and learning important skills like how to eat, hold a cup, and drink from a straw. She’s responding to movement, touch, smells and many sensory activities—like playing with feathers and pompoms.
Bria Truax is an amazing little fighter. She was born with Wolf-Hirschhorn syndrome and relies greatly on the therapy, medical care and specialized education provided by the Center. This vibrant 4-year-old is enjoying
We’re proud of Bria and grateful for your help in her many successes. Your gifts make a world of difference to all the individuals in our care. On behalf of Bria and her friends, thank you!
J o u rne y
udy and Randy Jorgenson were nearly bursting with happiness when their adoptive son entered the world. Judy was in the delivery room; Randy was pacing in the waiting room. For the Jamestown couple, this was a moment for which they had waited years. After adopting their daughter, Hannah, 13 years ago, they were eager to bring another child into their family. Five different adoption prospects failed, creating one heartbreak after another. But along came Riley, filling their hearts and home with joy. It didn’t take long before the Jorgensons started seeing warning signs that Riley, now 7, was lagging behind other children in his development. “We started noticing things early on, not long after he was born,” remembers Judy. “He wasn’t hitting his milestones. He wasn’t rolling over, holding toys or sitting up. I felt in my heart something was wrong.” Riley was diagnosed with global developmental delay (GDD), meaning there’s significant delay in multiple developmental domains. “We wondered,” says Judy, “would we be capable of taking care of him? Were we going to be able to give him what he needs?” Doctors gave the family little hope, telling Judy and Randy to not expect a lot from their son. The tide turns When Riley was 16 months old, he began receiving therapy services at the Jamestown campus of the Anne Carlsen Center (ACC). His team of therapists (physical, occupational and
speech) has taken a personalized approach to helping him learn important skills for life. “Riley can become quite fearful of new toys, activities and rooms,” explains Whitney Trautman, Riley’s physical therapist. “In order to be successful, we move very slowly with him. We give him the time he needs to see an activity (view therapist doing it), and then we introduce the activity to him and try to get him to participate. Once he is no longer afraid, we work on refining movements and completing the activity correctly.” A lot of the challenges Riley faces are associated with decreased motor coordination. He also has low muscle tone, which adds to his difficulty with balance and coordination. Physical therapy goals early on included standing and walking independently; he took his first steps on his 2nd birthday. He’s also worked on steering a trike and initiating pedaling of the trike. Lately, he’s enjoyed aquatic therapy in the Center’s warm water pool. “Riley is able to work on increasing his body awareness while lying on his back and stomach,” says Trautman. “The pool provides a great medium for working on balance activities because it gives him increased body support and allows him to gain independence doing activities such as standing on one foot. We also use the resistance of the water to work on strengthening activities.” Riley Jorgenson works with occupational therapist Jeannine Colburn on improving eye-hand coordination.
Occupational therapist Jeannine Colburn also is involved in helping Riley gain more strength. To help improve his stamina and muscle tone, she has Riley stand at a table to work on tasks—making sure he doesn’t lean on the table for support. Riley’s eyehand coordination has improved, as he watches his hand perform more intricate fine motor tasks. Riley has difficulties processing information from the senses and responding appropriately to sensory input. Colburn helps the family navigate the challenges that arise from sensory processing dysfunction. She has taught them how to establish a sensory diet throughout Riley’s day and throughout his environments.
grader at Roosevelt Elementary in Jamestown, he has been integrated into a regular classroom, with Special Education assistance with academics. “He participates with his class when it comes to recess, lunch, music, and arts and crafts,” explains Judy. “The kids in his classroom are so accepting of him. Riley absolutely loves school.” Coppin communicates on a regular basis with Riley’s speech/language pathologist at the school about the boy’s needs and progress. Currently, the two therapists are collaborating to get Riley’s personal iPad set up for use in his home and school environments. “A miracle every single day!”
The Jorgensons are a fam“Riley has an amazing famRandy and Judy Jorgenson, along with big ily of faith, placing great sister, Hannah, are helping 7-year-old Riley ily,” says Colburn. “From the importance on church inovercome obstacles and enjoy a full life. beginning, his mom and dad volvement. But, because of have been very interested in Riley’s sensory processing difficulties, the smallest learning more about Riley and his developmental noise during the church service (like a microphone delays. They have implemented occupational being turned on or off) would greatly disturb him. therapy suggestions into Riley’s life that have “When Riley was a toddler, the Anne Carlsen Cenallowed him to benefit much more from his learning ter helped prepare us for talking to our pastor. The opportunities.” visit went really well! The pastor talked and sang to Riley as they walked to the front of the church A voice for Riley together … and then he turned the microphone on ACC speech/language pathologist Rachel Copand off several times,” recalls Judy. “The experience pin has been working to equip Riley with the best made a big impression on Riley. He now sits calmly communication skills possible. Riley—who is nonduring the entire service, and our whole family can verbal—uses vocalizations, facial expressions, body be together in church.” Bis sister, Hannah, stood language, a picture exchange system (he gives a by her brother’s side during a Christmas program picture of a desired item in exchange for the item), performance that brought tears to the eyes of those and the iPad equipped with Proloquo2Go (an app who know Riley’s amazing story. that produces a natural-sounding voice after the Camping in the summer months has become more user selects a symbol or types text). He also knows enjoyable for the Jorgenson family, as Riley—who some sign language. used to be irritable and restless at times on these “Riley has become much more deliberate with his family outings—is now content to join his parents communication,” says Coppin. “He used to play and sister around the campfire. around on the iPad. Now he has discovered the pow“We witness a miracle every single day! The Anne er it gives him in controlling what happens next— Carlsen Center has totally changed our lives,” says such as in his therapy. He knows how to access his Judy. “Our family went from feeling hopeless to getvocabulary and lets me know what he thinks and ting the knowledge the Center has to offer. We know feels about things that are going on.” that Riley has a bright future … the possibilities are The skills Riley has gained from his therapy sessions are helping him thrive in the classroom. A 2nd endless!”
Board of Trustees
Carlsen clients were all winners, as the dollars raised will help pay for critical programs throughout the state.
Putting with a Purpose The hot and dry summer may have been tough on farmers, flowerbeds and air conditioning units, but for the Anne Carlsen Center, that weather was perfect for fundraising on the golf course throughout the state of North Dakota. August boasted near record temps and record attendees at the 31st annual ACC Benefit Golf Tournament in Jamestown. This sold-out event brought in more than $20,000 for the Anne Carlsen Center and welcomed a host of new sponsors, golfers and volunteers. Though no one walked away with the keys to a brand new car from one of several hole-in-one contests, Anne
Earlier in the month, the first annual Carlsen Cup mini-golf event kicked off in Fargo at Thunder Road. Teams from all over the region putted their way to help Anne Carlsen Center programming and to raise awareness of our new Community Based Services office in Fargo. In its inaugural year, the Carlsen Cup raised nearly $10,000.
Guests dined under a large white tent and enjoyed the music of a Canboulay steel drum band. Attendees browsed more than 30 silent auction items, socialized, and met many professionals from the Bismarck and surrounding Anne Carlsen Center offices. The event raised more than $10,000 for the Anne Carlsen Center. “We are so overwhelmed and grateful for the support we received from the BismarckMandan community for our first event,” says
Sue Offutt, Ph.D. Arlington Heights, Ill.
Joel Fremstad Moorhead, Minn.
Thomas Rohleder Fargo, N.D.
Harvey Huber Vice Chair Jamestown, N.D.
Janet Seaworth Secretary Bismarck, N.D.
Bruce Iserman Chair Fargo, N.D.
Pat Traynor Immediate Past Chair Fargo, N.D.
Pat McCullough Treasurer Edina, Minn.
Reesa Webb Englewood, Colo.
Robert Montgomery, M.D. Fargo, N.D.
Myra Quanrud, M.D. Ex Officio Jamestown, N.D.
Finally, the Golf for Autism tournament in Medora played host to an incredible day of golf, prizes, and refreshments to help fund this year’s Anne Carlsen Center Autism camps. Thanks to the Gates family of Dickinson for partnering to raise nearly $20,000 and inviting us to enjoy the breathtaking views and jaw-dropping generosity of the golfers who came this year.
Keep an eye out for the 2014 save-the-dates of all three of these incredible events. We offer a heartfelt thanks to all our sponsors, guests, volunteers and families who made our golf fundraisers such a success!
development Department — 701-952-5167
“Suits and Sandals” Provides Fun Setting for Good Cause A day on the beach usually requires swimsuits, flip flops and towels. A beach party on August 1 at McDowell Dam Beach near Bismarck featured more formal attire. The Anne Carlsen Center hosted a semi-casual evening of dinner and entertainment in its inaugural fundraiser in the Bismarck area, where the Center is currently providing Community Based Services.
Tim Flakoll Fargo, N.D.
Eric Monson Chief Executive Officer
Sam Brownell Information Technology Director
Marcia Gums Chief Operating Officer
Patrick Kirby Chief Development Officer
Allan Hartmann Chief Financial Officer
Kresha Wiest Director of Management Systems
Margie Johnson Human Resource Director
Chief Development Officer
Development Operations Coordinator
Associate Development Director
Development Systems Coordinator
Associate Development Director
Associate Development Director
The Suits & Sandals fundraising event on August 1 brought elegance to the McDowell Dam Beach. The tent was a welcome addition to shield from the sun and the light rain that fell later that night.
Michelle Walker, the Center’s Associate Development Director in Bismarck. “We are extremely pleased with its success and plan to make it bigger and better in years to come.” Keep your eyes open for next year’s event … shoes optional.
Published by: Anne Carlsen Center 701 3rd St. N.W., P.O. Box 8000 Jamestown, ND 58402 1-800-568-5175 www.annecenter.org
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Eco-friendly Ambassador Brittany Lipetzky, Assistant Editor The Forest Stewardship Council firstname.lastname@example.org logo you see here means we are printing The Ambassador on an Paul Johnson, Designer environmentally-certified paper. email@example.com Each page has a 10% postThe Ambassador is mailed, consumer waste content, and free of charge, for supporters the inks utilized are Soy Inks. of the mission and vision of the Anne Carlsen Center. On the Cover: Chris, Kelly and Mason Hutton smile for the camera. The Huttons are receiving ACC Early Intervention services. Photo by Jennifer Christenson, Imajennation Photography
O u r C o m m u n i t y Pa r t n e r s
The Anne Carlsen Center has partnered with area businesses who share our passion for empowering children, adults and families touched by disability or delay. These Community Partners are helping continue the legacy of our namesake, Dr. Anne Carlsen. We are extremely grateful for their commitment and compassion.
Non-Profit Org. U.S. Postage PAID FARGO, ND Permit #684
701 3rd St. N.W. P.O. Box 8000 Jamestown, ND 58402 www.annecarlsen.org
Riley Jorgenson benefits from aquatic therapy in the warm water pool at the Anne Carlsen Center. Read this Jamestown boyâ€™s story of determination and hope, beginning on page 10.
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By Their Side