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Research Updates!
by Joan Mowery
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There are several research projects right now looking at the cause of SDS. . . . Researchers are studying various drugs and possible gene therapy for patients. Another study is looking at how X-rays affect the bodies of SDS patients. Additionally, research is being done to study how SDS affects various body organs. There is an important study ongoing to identify a marker that will indicate which SDS patients will transform to MDS and/or leukemia.
If each person who knows a SDS patient would donate just $20.00 we could fund another research project. It could be the one that finds the cure. None of us wants to not have the money to fund that potentially most important of grants.
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Searching the World for a Match
by Nicole Shen
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Two years ago, our son, Roman, was diagnosed with SDS. Our doctors had also had him HLA typed and ran against the bone marrow registry. In this same conversation, we found out should he need a bone marrow transplant in the future, not one person matched him in the world....yet. I obviously didn't know much about what all that meant but knew it probably wasn't good. I immediately started asking people to join the bone marrow registry mainly through social media. I had a decent response and assumed at least those in my inner circle had swabbed. I was wrong. We had Roman ran against the registry every six months since then. Now two years later, still not one match in the bone marrow or cord blood registries. . . .
Joining the registry involves simple paperwork and a cheek swab. The entire process takes about 10-15 minutes. . . . For more information, families are encouraged to contact Be the Match or DKMS to see how you can get involved.
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Although we fight daily to save the lives of SDS patients and search for a cure, we must acknowledge those for whom a cure did not come in time.
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He was a caring man born in Cohuna, Australia on 28th December 1956. He was the youngest of 4 boys. John married Colleen on the 9th of March 1985, and had his daughter Sarah on the 8th of May 1990. John lived in Kyneton from 1994. His hobbies were making jewelry, collecting stamps and other items, and helping people with technical issues. John passed away 3 weeks after going into hospital on March 13, 2017.
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Connor's Heroes Inspiring Pediatric Cancer Research
Richmond Times Dispatch
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. . . Named for an area boy who survived a leukemia diagnosis, Connor's Heroes is focused on supporting central Virginia families facing childhood cancer diagnoses, starting with backpacks and tote bags delivered when children are first diagnosed.
But since its founding 11 years ago, the group has expanded its mission, choosing to raise funds for and encourage childhood cancer research taking place in Richmond. . . .
"I'm hopeful that as more and more people in the local community learn that there is pediatric cancer research happening right here in Richmond . . . they can actually donate to Connor's Heroes and it goes right to research that's happening here," said Lisa Goodwin, the group's executive director and Connor's mom.
Last year, in honor of its 10th anniversary, Connor's Heroes completed a $100,000 five-year pledge it made in 2013 to benefit Dr. Seth Corey's research, along with an additional $40,000 gift. . . .
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The 14th Annual & Last Dash...
Run Or Walk In The Final 5K Shwachman Diamond Dash
Saturday June 17, 2017 At 9am
Sayville, New York
All Proceeds go to funding SDS research
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Stay up to date with SDSF! Follow Us on Instagram at
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Odessa, MO
Grand Haven, MI
Liverpool, Merseyside UK
Fletcher, NC
Greeley, CO
Northridge, CA
Puyallup, WA
Rowland, NC
Farmington, NM
Orlando, WV
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Thank You For Your Donations
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Donations received between October 25, 2016 - April 14, 2017
Carl Topley
Carol Reed
Diana Gutierrez
Donna Neuberg
Honey Densen
James Knop
Judy Aufdenberg
Kapli Gotecha
Kathleen Schaffer
Kim & Miles Barrett
Krysta MacGray
Mark
Tantimonaco
Peter Dachille
Seth Corey
Katie Coopa
Stacy Spires
Stephanie & Wendell Stephenson
Summit Lane Faculty Fund
The Wireless Alliance LLC
CFC National Capital Area
CFC Overseas
Texas Coast CFC
United Way of Greater Niagara
Network for Good
Thrivent Choice
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In Honor of Jessica Bodron
- Joan Meister, Joni Bodron
In Honor of Troy & Kelsey DeBoer - Cornelius DeBoer
In Honor of Gracie VanBrunt - Malcolm Walsh, Ronald Buell, Brian Condon
In Honor of Collin Brown - Debra Brown, Morris & Judy Salter
In Honor of Brian & Kelsey Richards - Melissa Richards
In Honor of Anthony Mazzella - Michael Bertschi
In Honor of Sebastian Abel - Cynthia Peniche
In Honor of Shannon Stewart - Darrell Stewart
In Honor of Camden Kilcrease - Estate of Bill & Edwanna Decell
In Honor of Chilton Price - Larry & Alice Brown, Linda Price
In Honor of Steve & Kath Shortlidge - Millie Cassidy
In Honor of Jordyn Elizabeth Zajac - Pamela Hartshom
In Honor of Gulliana Mason - Ryan Masturo, Danielle Haag
In Honor of Noah Valentine - Tanya Diaz-Rulter
In Honor of River Puldo - Colton Flynn, Mark Pulido
In Honor of Roman & Nathan - Katie Cooper
In Honor of Leif Foy - Nicole Foy
In Honor of Raphie Raiola - Tersa Pugliese
In Honor of Rick Feiner (donating printing) - Jennifer Wachter
In Honor of Michael Billings - Marsha Misenhimer
In Honor of Natalie Livengood - Darlene Meyer
In Honor of Ann Sander
- Ted Dahlman
In Honor of Ralphie Raiola - Teresa Pugliese
In Honor of Danny Rohe - Jon & Sandy Curtis
In Honor of Emily & Kelsey Jenuwine - Center Line Lions Club
In Honor of Ryland L. - Victoria Jade Design
In Honor of Tobias Padilla - Mark Stuve, Oscar Padilla
In Honor of Keegan Brice - Angela Brice
In Honor of Makenna Gay - Christin Barkemeyer
In Honor of Marilyn Hannan - Maria Santini
In Honor of Johnse St. Hilaire - Cheryl Trow, Dorothy Smith, Shari St. Hilaire
In Honor of Roman Shen
- Booster, Frank D'Antuono, Nicole Ceparano, Nicole Shen, Todd Ring, Virginia Molkentin
In Honor of Marissa Avroch (In Memory of Ann Carpiniello) - Rose & Frank Canonico, Carol & Anthony Canonico, Diane Moschetta, Margaret Canonico,
Samuel J. Preston Elementary School
In Honor of Anthony Gregoretti - Mariel Joy Kimura, Peter & Stephanie Gregoretti, Richard Kaiser,Thomas & Anita Gribben
In Honor of Anthony Del Re
- Jay & Debra Bossert, Karen Fanizza, Laura Birro, Carole Del Re, Donna Milone, Dina & George Bednarczyk, P.S. 36 Holiday Fair,
PS 36 PTA
In Honor of Tavi Erni & Family
- Allison Emi, Stephanie Liebert,
Tammie Sebastian
In Honor of Nathan Grenell - Michelle Grenell, Nicole Ceparano,
Jennifer Kissling, Christie Kramer
In Honor of Taylor Krausen -
Scott Wagemann, Marianne Scifo, Andrea Prunty, Donna Loerker
In Honor of Joe & Jonathan Wall (In Memory of Wendy Hayes, Elinor Roden, Jane Clayton)-
John & Joyce Wall
In Honor of Maggie Collins -
Ann Gorman, Carol Altone, Christine Donohue, Jennifer Messick, Kathryn Garrity, Kristen Santacapito, Linda & Shannon Bartlett, Michael McCabe, Michele Jones, Sarah Murphy, Tammy Atwood, Virginia Einfalt
In Honor of Wade Wachter - Barb Wachter, Dreyer Electric, Olympic Steak House, Terry Duvall, Wade's World Fundraiser
In Memory of Michele Ellebracht Mowery - Brian May
In Memory of Sarah Kilby - Amica Companies Foundation, Andrew Vranos, Arnold E. Reiter, LLC, Barbara Jo Vanderkraats, Beth & Alec Beane, Brian Lyman, Carol Waddington, Caroline Hocking, Christine Hounsell, Christine McGrail - Jane Atticus & Family, College of the Holy Cross, Cumberland Municipal Employee FCU, Dan Kilby, Danette & Steven Aldi, Daniel Picciardi, David Achenbah, David Eaton, Debra Brown, Debra King, Denis O'Neil, Duoc Nguyen, Edward Azzaro, Elisa Mills, Elizabeth Smith, Gary Goodhile Sullivan Benefits, Heather Shortlidge, Heidi Junhans, Heidi Senecal, Helen Rosca, Helene Dowd, Jacqueline & Gary Gothing, Jean Leavitt, Jeffrey & Jeanne Moore, Joan Anderson, Joan Mowery, John & Marylin Arrigan, Joseph Casasanto, Joseph & Ann Giacchino, Joyce & Robert Brisson, Rebbeca Haines, Laurie Stenovitch, Lee Bingham, Lincoln Pediatric Assoc. Inc., Lynne Carrazza, Margaret Franks, Mary Cody-Kenney, Mary Hill, Michael Lochhead, Nicole Witherell, Norma & John Clayton, Paul Buzzotta, Phil Gibson, Pine Street Construction, Inc., Richard Miller, Rosemary Shea, Scott Hartwell & Family, Stephen & Ginger Lavache, Tyler Kilby, William Kenmnitzer
Rare Disease Day Donation
Allison Emi, Aurora Talavera, Casey Phalen, Eva Contrerus, Jennifer Wachter,
Kate Soza, Kristen Krausen, Lauren Livengood, Lewis Sumisiaski, Joan Mowery, Michelle Stockey, Nicole Wronski, Quan Lam, Richard Gotshall, Sandra Gutierrez, Sandra St. Helaire, Sherry Herzfeki, Stacy Spires, Terri Billings, Terry Duvall, Yvonne Kurzlow,
Raffle Ticket Purchases
Anita Gribben, Christine Murphy, Clarinda Copeland, Fara Lupescu,
Jennifer Wachter, Karen Callahan, Joan Mowery, LuLaRoe Brittany Moore, Meredith Garrett, Michele Baker, Michelle Grenell, Rachel Gregoretti, Rochelle Pruneski,
Stephanie Pilla
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Thank you for your monthly donations
Steven Kilcrease - SLK Management
Deana & Jeffrey Valiante
Maria Hall
Vickie Cox
Andrea Wolf
In Honor of Wade Wachter - Wade Wachter
In Honor of Marissa Avroch - Dianne Moschetta
In Memory of Michele Mowery - Joan & Greg Mowery
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Fundraisers
T-shirts, Pins, Charms, Bags, Magnets
Allison Emi
Ashley Largent
Beverly Smith
Christian Del Re
Greg Fletcher
Joan Mowery
Joni & Tim Bodron
Linda Kilcrease
Mary Balint
Nicole Foy
Richard Kaiser
Stephanie Pilla
Vicki Brown
Yahan Xie
Jennifer Avroch
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SDSF would like to encourage everyone to raise funds to support research and the Foundation. We have had families raise money through letter writing campaigns, school dances, corporate matching gifts through their employers, golf tournaments, physical competition events, Super Bowl parties and more.
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| Shop the SDSF Online Store |
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Did You Get Your SDSF Car Magnet Yet? Click the Link Below to Get Yours and see what other SDSF Merchandise We Have! All Proceeds Support Finding a Cure for SDS!
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Shwachman-Diamond Syndrome Foundation
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FOUNDER: Joan Mowery 1994
BOARD OF DIRECTORS
Christine James, President
Joan Mowery, Vice-President
Pamela Miller, Secretary
Bryan Sample, Treasurer
Ed Bickel, Creative Media Chair
Christian Del Ré, Communications Chair
Stephanie Gregoretti, Fundraising
Jenni Wachter, Webmaster
Nicole Shen, Membership
Other Amazing Leaders
Joyce Wall - Anna Angel Basket Coordinator
Maura Donahue - Advisor to the Board
Ed Turkaly - Advisor to the Board
Kim McDowell - Administrative Assistant and Bookkeeper
ATTORNEY: Ann Bodewes Stephens, Herzog Crebs
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Have an article, update, or fundraising activity you would like to share in a future newsletter? Email your story to:
christiandelre@shwachman-diamond.org.
We would love to hear from you and share your stories!
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