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We have a new look! We would like to have your opinion on the newsletter and how we could improve it, if needed. What would you like to read about? Would you be interested in writing about your SDS journey? This format is mobile friendly. You can share the newsletter easier with your friends, families, and contacts through Facebook, Twitter, and email.
In April, the SDS Scientific Congress convened in Verona, Italy. In attendance were physicians from all over the world presenting their new research findings about SDS. Almost all the presentations ended with the statement, "more research is needed." For this much needed research to happen, funds need to be raised; this is where you come into play. Any amount of money is helpful. Any size fundraiser is welcome. It is imperative that funding research continues. In this newsletter Dr. Johnson Liu summarizes the hematological presentations from Verona. It is crucial that these international research conferences continue for the further study of this disease, for better treatments, and ultimately a cure. The next SDS Scientific Congress will be held in Houston, Texas in 2018. We need your support. The organizing committee has stated that they would like more family involvement in the next Congress. Also given the wonderful location among several medical centers, they are possibly opening attendance of the presentations to medical students. The Congress is continuing to grow and we need to help fund research and sponsor future Congresses.
Thank you Dan Kilby for another successful Tough Mudder fundraiser. Your team's courage and generosity are greatly appreciated. Dan writes of his experience raising money in honor of his daughter Sarah Kilby in this newsletter. The obstacle course is challenging physically and mentally, and Team Sarah conquered it.
In the recent past and present there have been many patients fighting courageous battles, and one has lost the fight. We hear a lot about these patients and their families. Our hearts and prayers are always with them. It helps us understand our own children and what changes to possibly look for medically. We are such a small community that we have become family. When one member is hurting, we all hurt. The same applies when a member is doing well. Let us celebrate with you. Share the wins! Write us, email us, post it on our facebook page. The good fosters hope, hope for all of us.
In just a few short weeks, SDS session at Camp Sunshine begins! This is so exciting. For the first time it looks like a full house! Many new families are expected and quite a few adult patients too. I am looking forward to a memorable session. Wishing all those attending safe travels.
Sincerely,
Christine James
President
Shwachman Diamond Syndrome Foundation
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Camp Sunshine Details - Get All the Info!!
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SDS session at Camp Sunshine is a few short weeks away! We wish everyone could attend. With the limited space at Camp, the distance to travel, and personal budgets, we understand that not everyone can make it, and you will surely be missed. This year will be the first year we have a full house! We are so excited to see all the new faces and reconnect with returning families. Attending Camp Sunshine gives you the opportunity to meet other families with a member with SDS. A unique quality of the SDS session is the opportunity to listen to specialists' presentations and have a chance to chat over a meal.
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8th Annual International Congress on SDS
Verona, Italy
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The SDS International Congress was attended by researchers and physicians from 12 countries, along with representatives from family organizations from Canada, England, Germany, Denmark, Italy, and the U.S. It was an extremely busy 2 1/2 days agenda that covered all aspects of SDS. Dr. Liu has kindly agreed to provide a synopsis of the hematological presentations. We hope in the future to be able to provide information on some of the other areas that were presented at the Congress.
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6th Annual Tough Mudder A Huge Success!!
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The course was a 10.5 mile trek filled with over 20 physically and mentally challenging obstacles.
It was an amazing 4 hours. The start is always very emotional for me as I pluck my SDSF red bracelet and think of Sarah. Knowing what she has endured, and most likely will have to go through in the future inspires me. Any pain felt on that day is nothing compared to what kids like Sarah go through during everyday life.
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Pacolet, SC
Fort Worth, TX
Las Cruces, NM
Palmerston North, New Zealand
Salmon Arm, British Columbia
Staten Island, NY
Logan, KS
Twin Lakes, MI
Randlophy, NJ
Huntley, IL
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Thank You For Your Donations
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Donations received between November 1, 2015 - June 20, 2016
Frank & Rose Canonico
Carol Berwanger
Roy Hohn
Theresa Kasper
Bridget Collins
Caitlin Chander
Antonella
Terri Billings
Sherrie Speidel
Kathryn Gedge
Llyn Rivera
Wanda Huh
AmazonSmiles
Sun Area Technical Institute
United Way of the Lakeshore
United Way of Greater Niagara
United Way of Rhode Island
OSS/iGive
SDS Canada Inc.
Bravelets
PTA of Fire Island of Woodhull School
Prairie Farms Dairy, Inc.
The Prime Foundation
Booster
Mom's Club of Gardner KS Chapter
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Rare Disease Day Donations - Jennifer Wachter, Joan Mowery, Lucy Fifty Three, Brian Kaminski, Sandra Stuart, Danielle Steinberg, Nicole Foy, Maria Arcuri, Jonathan Garcia, Lauren Douglas, Michelle Stockey, Katie Cassidy, Katya Perez, Horst Jones LLC, Christian & Gina Del Re
In Honor of Camden Kilcrease - Lisa Kilcrease
In Honor of Jessica Bodron - Joni Bodron
In Honor of Davison Bishop - Kurt Koester
In Honor of Wade Wachter - Beverly Brown
In Honor Jonathan Miller - A.M. Yealey Elementary School
In Honor of Will Leonberger - Barbara & Lee Schuering
In Honor of Makenna Gay - Tracy & Derek Gay, Washburn Rural Middle School
In Honor of Gracie VanBrunt - Ronald Buell, Malcolm Walsh
In Honor of Roman Shen - Susan Cox, Nicole Shen
In Honor of Chilton Price - Phillip & Rebecca Price
In Honor of Sarah Kilby - Millie Cassidy
In Honor of Rick & Gulliana Mason - Ryan Maturo
In Honor of Emily & Kelsey Jenuwine - Center Line Lions Club
In Honor of Anthony Del Re - Yvonne Kurzlow, Laura & Joey Birro, Patricia McDonnell, Mary Ferraro, Jennifer & Ed Parente, Fran Lombardo, Richard & Orlanda Young, Kasia Jelicks, Nancy Riggio, Stephanie Scaffa, Maureen V. Dennis, Dina & George Bednarczyk, Donna Thompson
In Honor of Collin Brown - Doris & Wesley Cox, Morris & Judy Salter
In Honor of Brickelle Ballenger - LJC Studio
In Honor of Shay Ballinger - Matilda Jane Clothing
In Memory of Aunt Missy Michele Ellebracht Mowery - Amber & Brian May
In Memory of Sheila Ware - Patricia Yustein
In Memory of Anne Carpiniello - Steven & Marie Avroch
In Memory of Cami Smith - Nicole Shen
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Thank you for your monthly donations
Nicole Carpiniello
Steven Kilcrease
Deana & Jeffrey Valiante
Anthony Porrata
Maria Hall
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
Tough Mudder for Sara Kilby - Gary Senecal, Tim Shimko, Kenneth Martin, Stephanie Taylor, Monica Raspallo, Daniel Kilby, Fitness Brokers USA, Inc, Ed Wozniak, Mark Flynn, William Collins, Eric Martin, Stephanie Kilby, Ken Morrell, Cassandra Velazquez, Paul Dolan, Dominick Darcangelo, Sherrie Speidel, Michael Sechrest, Michael Cerasuolo, Nancy Murphy, Medical Consultations, James Romano, Millie Cassidy, Stephanie Noris, Mary Contino, Mary Murphy, Matthew Ludwig, Nicole Shen, Kathleen Grugan, James Sullivan, Patrick Consedine, Sherri Hines, Thomas Qualey, William Bishop, Julie Alfano. Kerri Saucier, Mary, Sean, Michael, Catie McVeigh, Rosanna Swillo, Douglas Williams, Sean Finucane, Tanis Maher, Michael Crouse, Edward McMellen, Marie DiGiulio, JoAnn Durette, Michele Sheppard, Bob Cioffi, Michael Gallagher, Donna Kilby, Brooke MacDonald, Joseph Taylor, Dean Bowrosen, Nicole Valentine, Louis Paciello, Mathew Way, Deborah Paquette, Heather Stevens, Dale Fogg, James Finucane, Michael Sullivan, Michelle Lozeau, Francis Sullivan, Keith Fogarty, The Goodwin Family, Scott Hartwell, Kristina Nadeau, John Brown, Mark Andreozzi, Ted Stenovitch, Michael Krentz, Michael Prendergast, Karen Hopkirk, Jeff Hyde, Edward Pryts, Carol Waddington, Chad Norton, Thomas Taylor
The Church of the Holy Child Preschool for Anthony Del Re -
Vincent & Amanda Fuatti, Jeffrey & Joel Bradley, Joseph & Christina Abruzzo, James & Stephanie Keegan, Daiana & Dennis Almodova, Sonia De Paulis, Danielle Lopez, Joseph Marino, Anthony & Jami Diana, William & Lisa Knoop, Angela & Frank Costabile, Jeffrey & Caroline Comberford, Cory & tara Benoqitz, Melissa De Paola, Frances & Frank Sarcona, Jaime & Nicholas Kaminski, Ceasar Bagui, Danielle Cappelli, Amber & Brian Andron, Thomas & Casey Digiovanni, Peter & Donna Damon, Carmine & Lisa Jichetti, James & Geanamarie Luisi, Donna & Stephen Milone
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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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