Support for Ben, His Family & The Fight Against Histiocytosis Update 12/31/02
We would like to take this opportunity to thank our parents, especially our Mothers (Linda & Carol) for dropping everything and coming to our assistance in a time of need. We cannot imagine a more supportive family. We love you!Sharon Miller, Mike Golding and Chris Salem have given us so much technical information and feedback, we cannot thank them enough. The parents of children with Histiocytosis can and will continue to make a difference and impact this disease.
Dr. Arceci, Dr. McClain, Dr. Jubran & Dr. Grois have always been extremely helpful and generous despite their incredibly busy schedules.
A heartfelt thanks for John Snow and our friends at Honeywell for setting up an account for us. Totally unexpected!! Thanks!
Thank you Cheryl, Keith, Austin, Brandon, Jacob, Jordan, Terri & the lake party of July 27th!!! Click here to see why we are thanking them.
A special thanks to Beth Kozura for setting up the meals for us!!! It has been a huge amount of work - we very much appreciate it. A special thanks to Susan Arevalo for organizing our AIT friends.
A deep thank you from our employeer's, The AIT Group and Motorola. Without their support, understanding and compasion, our life would be much more difficult.
Ben's Run 2002 was fantastic. It filled our family with so much hope. Words will never sufficiently thank the Ben's Run Team or all the sponsors and participants. An extra extra extra special thank you to Beth Kozura, the chief organizer and visionary. Without Beth's drive, determination, passion and friendship, the run could never have happened! Thanks to the entire extremely hard working team... Suzanne Reddie, Rasa Biciunas, Lynn Langenderfer, Dennis Kozura, Nathan Vaughn, Sharon Miller & Jennifer Richelsoph. Thanks to the many many other volunteers and people that worked so hard. To name just a few...Angela Muniz, Cara Hughes, Melissa Kaene, Dara Schulenberg, Tammy Niebling, Just Jen, Aaron Walker, and Susan Arevalo. Everyone went so far out of their way - we are still in disbelief. Here is to Ben's Run 2003! If you are interested in supporting Ben's Run 2003, e-mail us.
Thanks to the Emily Center at Phoenix Children's Hospital. They are always friendly and happly respond to all our endless requests for research papers. Life would be tougher without this valuable resource.
Meals have helped us so much over the past several months. They have allowed us to free up valuable time and money to care for Ben and to research this disease. The kindness of everyone has touched us deeply. We have enjoyed seeing our friends every night - your visits have brought us some measure of sanity and normalcy.A special thanks to Beth Kozura for setting up the meals for us!!! It has been a huge amount of work - we very much appreciate it.
A special thanks to Susan Arevalo for organizing our AIT friends.Here is a list of everyone that has brought us meals or purchased meals for us - thank you!!! The list is arranged in semi alphabetical order. I wanted to give those that brought us multiple meals a special thanks, and have indicated that with an asterisk (*). If you are missing off the list PLEASE let us know.
Neighbors
Emily & Russ Christ*
Sandra & Patrick Mullen
Carolyn Wheeler & Family*Family & Family Friends
Carol Christener & Family*
Tracy Floyd*
Muriel & Steve DeCloedt*
Cheryl Kepner & Family*
Beth & Dennis Kozura*
Sharon Miller & Family
Tammy & Jeff Robey*
Bill's Parents, Linda & Ben Stokman
Carolyn's Parents, Carol & Chuck SwansonPurdue Friends
Eric Meister*
Tad & Toni Szulc*
Steve & Jen Schmitt*
Rebecca & Keith West'Motorola' Friends
Jasmin & Mike Buzinski
Cheryl Christenson
Monica & Jeff Crowder
Leanne & Mike Eleff*
Marcy Goldsmith*
Margie Gomez*
Jeff & Eunice Kokovitch
Suzi Dippe and John McBride*
Nathan Vaughn*'Honeywell' Friends
Sheri & Gary Armstrong - sorry we cancled on you!
Rasa Biciunas*
Tina & Ken Chaney
Adam & Michelle Kohorn
Lynn Langenderfer
Gloria Lafdili*
Pat Jordan*
Bonnie & John Snow*
Adriane & Bill Watson*ASU MBA
Lalena Chistopherson
Erin Chumbley
Angelia Muniz
Tammy & Steve Niebling
Suzanne Reddie*
Jennifer Richelsoph
Aaron Walker*
iClub - Carolyn's Investment Club - Chrystine Cherry / Lalena Christopherson / Erin Chumbley/ Mae Delabarre / Lisa Handley / Lane Johnson / Mia Kirkwood / Melissa Lettow / Kathleen Mahrle / Angela Muniz / Tammy Niebling / Martha Recht / Suzanne Reddie / Karen Steppert *AIT
Joan Abraham*
Susan Arevalo*
Laura & Artagnan Ayala
Michelle & Dave Cano*
Risa & Ben Cromwell*
Maryanne & Greg Eckerman
Nadine & Rob Elliott
Hollis & Jon Enwiller*
Lisa & Todd Griggs
Judy & Merv Hedding
Sharon & Dan Jorgensen*
Melissa & Charles Keane*
Mark Malone & Family
Reynet Marneweck*
Nancy & Jim Parmer*
Julie & Craig Peugnet
Jeannie & Marty Shultz*
Bill's Delphi Black Belt Wave 12 Class*
We would like to extend a special thanks to all those praying for Ben. We are very delighted to know that most of the worlds religions are praying for Ben. We know of the following:Roman Catholic - Orthodox Catholic - Judaism
Protestant (Luthreran, Episcopal & Presbyterian)
Christian - Muslim - Baptist - Mormon - Methodist
Hinduism - Born Again Christian - Baha'i FaithWe are sure many many people are praying for Ben, this is the list of those who have mentioned it to us or from whom we have recieved a mass or prayer card. PLEASE let us know if we have missed you. Please keep up your prayers, they mean so much to us...
Masses & Special Offerings in Ben's Name
Christine & Daniel Clark - Marianist Spiritual Alliance - One mass per day for a year
Debby Egging-Ortiz - Prayer chains of St. Dominic's and St. Paul's parish of Columbia City
Bill & Carol Fasano - Society of the Little Flower Healing Enrollment under the special patronage of St Therese - Masses for the Healing
The Flynn Family (Patrick, Deb & Madeleine) - National Shrine of St. Jude - share in the masses offered each day.
Dino & Kim Gaetano - Our Lady of Lourdes in France each month and National Shrine of Our Lady of the Snow in Belleville, Illinois each day
Bette Geatano - Franciscan Friars of the Ltonement - Graymoor - Holy mass every day
Joyce Gaetano - Holy Water & Our Lady of Lourdes in France each month and National Shrine of Our Lady of the Snow in Belleville, Illinois each day
Tina & Ron Gombita - League of Saint Anthony - Daily masses and prayers
Sydney Salem Golding - Our Special Angel
Colette & Bill Johnson & their church have sent us many many personalized prayer cards
Dwight Keefer - Thanks for the dedication and time spent with Ben
Joe & Dottie Skwiercz - Passionist Spiritual Enrollment
The McGann Family - The Golden Treasury of Holy Cross Prayer at Notre DamePeople Praying for Ben
Kevin Abney & his friends and family prayer list & his church
David Alexander
Jennifer Alexander
Wendy, Neal & Cole Alexander
Dan Afseth
Bruno Aguilar
Nancy Altherr
Sheri & Gary Armstrong
Tammy Austin & Family
Karen Averbeck
Artagnan Ayala & Family
Jenny Bailey
Hermak Banda & Family
Friends at Brandywine Elementary School
Amy Barber
Jill, Raji & Gabriel Barbir
David and Donna Bean
Robert Benny
Sondra Bookwalter
Sue & Terry Braden
Karen & Dan Burdette
Lynn Card
Tina & Ken Chaney
Chris Chrzanowski & his church congregation
Carol Christener, her family & all the Berrien County Michigan Churches
Cheryl Christenson
Phillip Christopher
Dean Christolear
Michelle Cloyd
David Cole
Community Church of God in Birdsnest, VA / Northbridge Baptist church in Charleston, SC / Baptist Church near Lakenheath, UK / Baptist Church in Korea
Brian & Diane Cottrell
Jonie Crawford
Ben Cromwell
Ha Dao
Doretta Davies
Tom, Beckey & Megann DeMeester
Johan Denecke
Suzi Dippe, John and Jackson McBride
Desire Djoman
Mr. & Mrs. Donaldson
Belinda Downs
Gary and Cindy Downs & West Point Class of '67 (Carolyn's father's class)
Brentt Duff and Family
Leanne Eleff
Nadine Elliott
Bert, Elaine, Ashely, Mary & Carrie Egging
Debby Egging-Ortiz & Robert Ortiz
Joe & Wilma Egging
Amber Emmons
Jon & Hollis Enwiller
Andy Evans
Ron Evans
Brice, Jacob, Tammy & Stephan Farrell & their church
Cheryn & John Fasano
Ann Feicht
Anita Ferguson
Paul & Cindy Foisy & Family
Fred Foxworthy
Marcela & Bradley Garrett
Yoseph Gebre-Giorgis & Family
Bette Gaetano
Anne Gick
Marcy Goldsmith
Tina Gombita
Margie & Roy Gomez
Miguel & Martha Gomez
Cammie Green-Hall
Todd, Lisa, Jeremy & Nate Griggs
Lisa & Bryan Hale
Robin Helms
Beth Hendricks & Others at Delphi Thermal
Patrick Herber
Jose Hernandez
Alonzo Hinojosa & Family
Robyn Hoffman
Pam Hoose
Michelle Huddleston
Cindy Hutson
Wanda Janes
Denice Jentlie
Walt Johns
Sharon & Dan Jorgensen
Brian Ketterling
Daniela Koehn
Michele & Adam Kohorn
Jeff & Eunice Kokovitch
Cathy Kush
Doris Kwok
Gloria Lafdili
Kathy Lisek
Nadine & Marrina Lockhart
Kris Lockwood
Andres Loyo
Suzi and John McBride
Reinet Marneweck
Steve McMullen
Friends at Merritt Elementary School
Doug, Kim and Emily Muegge
Patrick & Sandra Mullen (And the 450 children of St. John Bosco Catholic School)
Khanh Nguyen and Family
Tammy, Stephen, Michael and Carter Niebling, their family in Wisconson and Friends in Germany
Jamie Norris
Dean Omori
Marsha O'Neal
Humberto Orihuela & The Mexico Technical Center
Bruce Owen
Karianne Paolo
Pat Pendergast
Carol Peters
Craig Peugnet & Family
John Phillips
Kevin Poli
Shannon & Rob Power
Heidi Pursley
Ravi Rajagopalan
Keli Ray
Suzanne Reddie
Mike Riley
Jeff, Tammy, Rochelle, Carrie, Libby & Missy Robey
Doug Roy
Mike Golding & Chris Salem
Darla Salem
Shirley Sandifer
Fenella Smith
Julian Smith
Bonnie & John Snow
Jen, Steve and Samantha Schmitt
Nadine & Bob Schmitt
Joe Searle
Ram & Rekha Shastri
Anna Shugars
Chris & Dee Slattery
Sharon & Ben Spiegel
Samantha Stackhouse
Jeff Sutter
Cheryn Swanson & John Fasano
Tad & Toni Szulc
Neyde & Paul Szych
Robert Szych
David Tea
Nancy and Pete Toth
Cathy Tomutsa
Debbie, Terry, Lee, and Matthew Trimmer
Nathan Vaughn
Dave Vess
Ion & Aneta Vintilescu
Bill & Adriane Watson & their prayer group
Cassie Weglowski
Rebecca & Keith West
Mark Wirth
Brenda Wiseman
Andy Zaloga
A fund has been set up by Sydney's family specifically for JXG research. This is the first of its kind. Read more here.Below is a excerpt from Sydney's web page:
The Histiocytosis Association of America (HAA) provides information about histiocytic diseases, financial support for research efforts, as well emotional support for parents and patients living with these diseases. As we have learned more about the histiocytic disease that took Sydney from us, we are now turning our attention toward working with the Histiocytosis Association of America to fund clinical research in hopes of finding more effective ways to diagnose and provide treatment for other children with histiocytic disorders.
Our long-term goal is to create a research fund that will focus exclusively on JXG. This is a major undertaking, which will require a great deal of time and effort, but could have far-reaching impact in the future. If you would like to support this effort with a contribution, please make your cheque payable to Histiocytosis Association of America and be sure to write following note in the memo area: "In memory of Sydney Salem Golding, designated for the research fund." You can mail your contribution to: Histiocytosis Association of America · 72 E. Holly Ave., Suite 101, Pittman, NJ 08071
