Vol. 18, No. 3 October 2012

THE CONNECTION

The Newsletter of the Prader-WilliNEWSLETTER Syndrom DATE e Association of Wisconsin, Inc. Board of Directors: Supporting, Educating and Advocating for Persons with Prader-Willi Syndrome and All who are Impacted by this Disorder President: Crystal Boser Vice President: Jackie The mission of the Prader Willi Syndrome Association of Wisconsin, Inc. is to Support, Educate and Advocate for persons with Prader-Willi Syndrome, their Mallow families and professionals in meeting the challenges of this disability. Treasurer: Tom Hughes A Message from the President: Crystal Boser Board members: Don

Dorn, Candace Lipski, As I sit down to write this I am amazed that fall is already upon us. I am also Melanie Ignatowski, Bobbi amazed at how busy the organization has been throughout this year so far. In addition to our 1st Annual Snowflake Ball in January and our 2nd Annual On the Move walk-a-thon Pogrant in May, we also held our 12th Annual Golf Benefit on August 25th. This event was once Program Director: Mary again held at the lovely Windwood of Watertown golf course, and I am excited to an- Lynn Larson nounce we had an all time high of 130 golfers!! Everyone enjoyed 18 holes of golf fol- Assistant Program Dir: lowed by a wonderful lunch, a silent auction and everyone left with a nice door prize. I would like to extend a sincere, heart felt thank you to Dave Nagy of Oconomowoc Resi- Melodee Luening dential Programs for his immense generosity not only this year, but also in years past. Office Address: Without the generosity from people like Dave, our event would not be as successful as it PWSA of WI, Inc. is. Thanks Dave!! Also, thank you to everyone who participated in or donated items to the 2701 N. Alexander St. event!! Make sure to mark August 24th, 2013 on your calendars now so you can plan to Appleton, WI 54911-2312 join us next year. Throughout the past several months the organization has also been busy preparing Toll free: 1-866-797-2947 for the upcoming “Planning For the Future: Strategies to Support Our Children’s Lifelong Email: Needs” seminar that is being help in Appleton on Saturday, November 3rd. This is a won- [email protected] derful chance to hear knowledgeable speakers share information about wills, trusts, guard- Website: ianship, and social security disability versus supplemental security income. Child/adult care will be provided by experienced volunteers so we hope to see you all there. www.pwsaofwi.org In addition to the aforementioned events, the organization has also been busy working to make some changes to the organization as a whole. In September, the board of PWSA of WI, Inc. is a chap- directors voted to add two more board member positions, which brings the total to five. ter of PWSA (USA) The board also voted to hire Ascedia, a web design company, to re-design our current 8588 Potter Park Drive, website. We are hoping to have a new and improved look within the next few months. We have also been working diligently to keep our Facebook page updated, and we have start- Suite 500 ed a Facebook page for children of young parents. This new Facebook page works in con- Sarasota, FL 34238 junction with Pinterest so interested parties can share various ideas and interests. If you Toll free: 800-926-4797 or have a child with PWS who is ten years old or younger and you are interested in joining 941-312-0400 this special Facebook page, please contact our Program Director, Mary Lynn Larson. We are very excited about all of these changes and believe they will help continue to move the Email: organization forward. If you have any ideas you would like the board [email protected] of directors to consider please don’t hesitate to share them with us. Website: Have a wonderful fall and I hope to see you in November. www.pwsausa.org Crystal L. Boser

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PWSA of WI, Inc.’s Annual Charity Golf Benefit We had beautiful weather for our 12th Thank you to the following individuals and busi- Annual Golf Benefit on Saturday, August 25th - nesses that donated to this year’s event! and it seemed everyone had a great time! We 2012 Prize Donors had 130 golfers (YEAH!! A new record!) attend Joe & Jean VanTuyle Dennis Schultz and after a gorgeous day on the course, they Richfield Napa Greg Wagner enjoyed lunch upstairs with a variety of prizes Don & Barb Dorn family Joan Lohneis being given out and the silent auction!. We John & Bobbi Pogrant Thomas J. Hughes DDS also took a moment to say ”Thanks!” to a tre- Mike Hassler Art & Scenes Tom Podewils mendous supporter of PWSA of WI, Inc.—Dave Ben & Jerry’s Homemade, Inc John & Betty Pogrant Nagy. Dave Al & Melodee Luening Joseph & Mary Gareau has always Papa Murphy’s RD Image,LLC done so much Applebee’s to make our Kelley Benson UWM Athletics golf benefit American Girl Green Bay Gamblers and other Delzer Lithograph Company Wigwam Mills Inc. events a success - and without our generous Pantheon Industries Inc. Dave Nagy supporters, we could not do all we do. Thank John & Candice Lipski you!! Thank you all so very much!! Jerry & Penny Koerner Charles & Gisele Harvey Mark your calendars now for next year’s event Windwood of Watertown Milwaukee County Zoo Bartolotta Restaurants Jim & Renee Breit Plastikoil Plus Inc. Bits & Pieces August 24, 2013 Festa! Italiana Wines for Humanity Saz’s Catering Tina Kroeplin Hope to see you all there! Nancy Burlingame Xpression by Peggy Clint & Crystal Boser Top Secret Buffalo Phil’s Pizza Moosejaw Pizza Goebel Woodwork Inc. Julia Schlafer Sheild Family Dentistry Kathie Gabriel IL Railway Museum WG&R Furniture Walt Disney World TJ Maxx Shedd Aquarium The Club Tap Applebee’s Pizza Hut Bruce & Jackie Mallow family Mt. Olympus Independent Printing Company, Inc. John & Marguerite Rupnow family Lake of the Torches - Resort & Casino Prader-Willi Homes of Oconomowoc

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James & Karen Plosczynski Lueny Persons Inc. LLC AILCO Equipment Financial Group - Brookfield, WI In Honor of Martha Lehman - Love Mom & Dad In Honor of Sarah Hughes - Denis & Madonna David Sheild Family Dentistry - Oconomowoc, WI 2012 Hole Sponsors Constantine Stamatelakys DDS, - Periodontics & CGC, Inc. Implant Services Tosa Pediatrics Women’s International Pharmacy In Honor of Tony Dorn - Laurence & Leslie Hall In Honor of Tony Dorn - Dan & Shirley Kealey Richard M. Lofthouse Sr., D.D.S., LLC Fauerbach Automotive Riegel Law, S.C Honoring Sara Hughes - Detlef Moore & Rochelle Bast The Ignatowski family In Honor of Tony Dorn - Larry & Mary Dall family In Honor of Tony Dorn - John Rockenbach In Honor of Teresa Bacigalupo - Love Dad In Honor of Tony Dorn - “Westridge Friends” 6

In Honor of Tony Dorn - Love Mom & Dad In Honor of Katherine C. Baker - Sam & Diana Baker In Honor of Tony Dorn - Mark Dorn & Laurie Grinnell In Honor of Tony Dorn - The Grall, Hazzard & Schneider families Candy Ziegelbauer In Honor of Beth LaBella - LaBella Consulting Inc. In Honor of Alex & Matthew - Mike & Mary Lynn Larson CSI Testing, Inc. Oconomowoc Developmental Training Center, LLC Pantheon Industries, Inc. Prader-Willi Homes of Oconomowoc In Honor of Ann Burlingame In Honor of Beth LaBella - The Ausick Family In Honor of Peter Frazin - Love Mom & Dad Max A Sass & Sons Funeral Homes In Honor of Addy Pogrant - Love Mom & Dad Honoring Addison Pogrant—Appleton Control Systems Messmer Catholic Schools Hughes Dental Clinic—Cassville, WI Delzer Lithograph Company In Honor of Katie Scheidegger - Tom & Judy Scheidegger Larry, Lori & Tom Abler - Appleton, WI In Honor of Tony Dorn - Mary Kay & Rusty Bishop

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Notes from the Office: We offer a box lunch, By Mary Lynn Larson a lot of fun and some entertainment! We It’s crazy busy in the office!! It want you to start get- seems we just finished up the golf ting your teams ready outing and we are deep into plans and make your pledge for our upcoming conference: donors aware so this can be our best “Planning for the Future: Strate- walk yet! Its sure to be a great gies to Support Our Children’s time! Lifelong Needs” which we are Please take a moment to con- hosting in Appleton. This will be a sider taking part in the Vanderbilt great learning opportunity for every- survey for adolescent siblings. It al- one—no matter where you are in the so requires parent participation to process of planning for your loved be eligible for the Target gift card. one! We have speakers addressing The complete information is located wills and trusts, SSI and SSDI, as on page 7 of this newsletter. well as guardianship. Register to- Will we see you in Appleton in day—check our web site at November? Mary Lynn www.pwsaofwi.org if you need more information about the conference, the child/adult care or overnight SAVE THE DATES lodging in the area! Or call Mary Lynn at the state office. January 26, 2013 MORE GOOD NEWS!! PWSA of WI, will be hosting PWSA of WI, Inc.’s their 2nd annual Snowflake Ball on 2nd Annual January 26, 2013 in Oconomowoc! We are eager to do this because of Snowflake the tremendous turn out and posi- tive response we received from so Ball many of our attendees and mem- bers! So mark the date on your cal- May 11, 2013 endar and look for the details to be mailed out shortly! PWSA of WI, Inc.’s Got your teams ready yet?? 3rd Annual On the We are looking ahead to our 3rd Annual On the Move Walkathon Move Walkathon which will be held on May 11, 2013 at Fowler Park in Oconomowoc! It’s Details to follow! a day of fun, exercise and friends.

The Wisconsin Connection 4 Vol. 18, No. 3 October 2012 Planning for the Future: Are you interested in staying Strategies to Support our overnight the night before the conference? A block of rooms has Children’s Lifelong Needs been reserved at the Cambria Suites

As a parent or family member of someone Hotel. Rooms include a king size bed with a developmental disability, a lot of and pull out couch and are available questions arise! Will they be able to work for $99 + taxes for Friday November and sustain themselves? Can they get in- 2nd. Make sure to mention PWSA of surance? Should we gain guardianship? WI to get a discounted rate. How do we support our loved one with PWS once we are gone? Do we need a spe- Deadline: October 12th! cial will? A trust? How do we do that? Cambria Suites—Appleton 3940 N Gateway Dr., Appleton, WI PWSA of WI, Inc. is hosting a training to try and answer some of these many questions Toll Free: 1-866-430-2692

we all have as our loved one gets older. We have an attorney who will speak on wills And the and trusts; as well as other important legal documents to have. We have other speak- results are ers talking about guardianship, social secu- in… rity disability income (SSDI) and supple- Thanks to everyone who returned mental security income (SSI). We recog- their ballot in the election. I would like to nize that many of our members may not take this moment to say Thanks to one of have children or loved ones near adult age, our ‘retiring’ members who has served as but it is so important to make plans before our Treasurer for a long time, Tom you reach the point of needing it! Hughes. Please make sure to let him Date: Saturday, November 3, 2012 know of your appreciation for his years of Time: 8am—3:30pm work and dedication to the organization Cost: $30 for PWSA of WI member the next time you see him!! $40 for non members We are happy to welcome the new faces and grateful that others stepped up/ $15 for child/adult care into their new role… Welcome the follow- Location: First English Lutheran ing individuals to the PWSA of WI, Inc. Church, North site; 6331 N. Ballard officer and Board of Directors positions: Road, Vice President: Don Dorn Appleton WI Treasurer: Lynn Ann Miller Board Members: Jackie Mallow, Steve The Annual PWSA of WI, Inc. Steffen and Nancy Burlingame. membership meeting will be Welcome to the Board and Thank you for held following the conference. your support!

The Wisconsin Connection 5 Vol. 18, No. 3 October 2012 The following donors have made Robert Gilomen Jason Rieve contributions to PWSA of WI, Rusty Chesmore Thomas Ruesch Richard Becker Daniel Damico Inc. between 06/01/2012 through Ben Van Korn Gerald Branski 08/31/2012. We want to thank Dave Hudson Jay Neider you for your continued support. Mark Zimmerman Jason Yahn We try to be accurate in recognizing James Koopman Marilyn Klingele our contributors and apologize for Kevin Edmonston Mike Hassler Cathy Magill Mike Manz any errors or omissions. If you note Jay Szpiszar Marty Kuss an error, please do not hesitate to Mike Bihua Riegel Law, S.C. contact us so we might correct it. Tosa Pediatrics Joe Bacigalupo Donors Todd & Jerilyn Bramson Jody Witte-Davis Ben & Leslie Miller Ed & Daun Talbott Joe & Elaine Gareau John Rockenbach Bruce & Cindy Opsal George Koenig Mary Forlenza James Jones Mike & Ann Fitzgerald The Ausick family Anonymous Sam & Diane Baker Larry & Jayne Frazin Green Bay Packers Messmer High School Tina Kroeplin John & Cathie Lehman The Club Tap Fauerbach Automotive Eric Christensen Shedd Aquarium TJ Maxx Don & Barb Dorn Robert Beckmann Walt Disney World WG & R Furniture Tom & Agnes Hughes Thomas Podewils Buffalo Phil’s Pizza Top Secret Bruce & Candace Crass James Neider Moosejaw Pizza Julia Schlafer Joe & Jean VanTuyle Greg Wagner Goebel Woodwork, Inc. Dennis Schultz John & Bobbi Pogrant Joan Lohneis Milwaukee Bucks IL Railway Museum Monona Bookkeeping Pantheon Industries Hughes Dental Clinic Kathie Gabriel John & Betty Pogrant Lisa Aumann Robert Onopa RD Image, LLC Candace Ziegelbauer John Hassler Wigwam Mills, Inc. Pizza Hut Randy & Nancy Ludin Alisa Farrell Nancy Burlingame Saz’s Catering Rick Kalscheuer Brenda Donovan Xpressions by Peggy Milwaukee Wave Richard Naleid Andrew Branski Bartolotta Restaurants Richfield Napa Kent Smith Brad Kuenn WI Hospitality Group Mt. Olympus John & Candace Lipski Tyler Dorn Milwaukee Brewers Papa Murphy’s Kyle Weisman Kurt Weisman Milwaukee County Zoo Jim & Renee Breit Clint & Crystal Boser Daniel Nagel Applebee’s Plastikoil Plus, Inc. Al & Melodee Luening ODTC, Inc. Green Bay Gamblers Festa! Italiana Mike Schultz CGC, Inc. Bits & Pieces Kelley Benson Casey Lamb Gary Boser Wines for Humanity UWM Athletics Kory Weisman Charles Supple American Girl Tom & Deb Schmitz Dave Nagy Allison Billings Dan Simmons Tom & Sandy Grall Brandon Lewis Anthony Metro Waggin Tails Dog Spa Cathy Hazzard

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Jim & Mary Schneider Jordan Beck Jerry & Kathy Ignatowski Chris & Jessica Kadow Polly Tubbs Appleton Control Systems Crystal Van Woelderen Jean Hoffman Daniel & Shirley Kealey Elizabeth Ryerson Chris Thompson University of Wisconsin Richard &Ann Knoff Monique Currie Constantine Stamatelakys Jeremiah Hartigan Dr. Jean Holder John & Pam Christensen Max A. Sass and Sons Funeral Homes Hudson Team—Middleton Ford Wells Fargo Community Support Campaign Mike & Mary Lynn Larson Derek & Charlotte Supple Gerald & Penny Koerner Ben and Jerry’s Homemade, Inc. Honorariums John & Marguerite Rupnow family Lillian Peronto: in honor of Andy Mankowski James & Karen Ploszynski

Windwood of Watertown

Mike Hassler Art & Scenes

Lake of the Torches—Resort and Casino

Larry & Mary Dall family

Charles & Gisele Harvey

Larry, Lori & Tom Abler Women’s International Pharmacy Survey Participants Needed! Laurence & Leslie Hall family Adolescent siblings in families with 2 or Rusty & Mary Kay Bishop more children—both children must be be- Kevin & Janet Huggins tween the ages of 12—18 years. Detlef Moore & Rochelle Bast Mark Dorn & Laurie Grinnell Description: We are interested in how Tom & Judy Scheidegger having a brother or sister impacts adoles- Delzer Lithograph Company cents. We invite parents and siblings to ill out an online survey. Families with and Bruce and Jackie Mallow family without children with disabilities are wel- Independent Printing Company comed to participate. Chad & Melissa Sirovina Jon Mark & Debra Fueger Compensation: For your participation, you Prader-Willi Homes of Oconomowoc, Inc. will be entered in a drawing for one of 40 Knights of Columbus Council 617—Appleton $50 Target gift cards. You will have ap- LaBella Consulting, Inc. proximately a 1 in 10 chance of winning Sheild Family Dentistry the gift card.

Carl LaBella—CSI Testing Study requirements: completion of one AILCO Equipment Finance survey—20 min for parents , 15 min for Dennis & Madonna David adolescents. Alan & Kathleen Luening, Sr. Richard Lofthouse, Sr., DDS Survey link: https://redcap.vanderbilt.edu/ surveys/?s=RbeQdw United Way Metro Chicago

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PWSA of WI, Inc.’s Event Calendar November 3, 2012 PWSA of WI, Inc.’s Training: First English Planning for the Future: Strate- Lutheran Church, gies to Support our Children’s North site, Lifelong Needs Appleton, WI January 26, 2013 PWSA of WI, Inc.’s PWHO Gym 2nd Annual Oconomowoc, WI Snowflake Ball May 11, 2013 PWSA of WI, Inc.’s Fowler Park 3rd Annual Oconomowoc, WI On the Move Walkathon

Prader-Willi Syndrome Association of WI, Inc. 2701 N. Alexander St. Appleton, WI 54911-2312 Toll free: 1-866-797-2947 Email: [email protected] Web site: www.pwsaofwi.org

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