Rare Disease Day - February 28, 2017

The Importance of Rare Disease Day
by Nicole Shen
Patients around the world will mark the tenth annual Rare Disease Day on Tuesday, February 28th.   A rare disease, also referred to as an orphan disease, is any disease that affects a small percentage of the population.  Global Genes have estimated that more than 300 million people worldwide are living with one of the 7,000 diseases they define as "rare" in the United States.  Over the last 10 years, Rare Disease Day has become iconic as the global campaign for raising awareness of rare diseases . . . Rare disease research is crucial to providing patients with the solutions they need, whether it is a treatment, cure or improved care.  The tenth edition of Rare Disease Day will see people from all over the world come together to advocate for more research on rare diseases.

In honor of Rare Disease Day on February 28, 2017, we're challenging YOU to show your support for SDS patients and  DONATE ANY AMOUNT to help patients afflicted with Shwachman-Diamond Syndrome.

Please click the link below to help us reach our goal of $3,000 before February 28, 2017.
Staten Island Elementary School Cares About Rare!
by Christian Del Re

The Parent-Teacher Association of P.S. 36 on Staten Island, New York hosted a fundraiser for SDSF!  My wife, Gina, with the help of another SDS mom, Jenni Wachter, designed a t-shirt to spread awareness about Rare Disease Day and SDS at the school.  The PTA sold over 300 shirts to teachers, parents, students, and staff members raising $1,300 for SDSF!



Shopping for a Cure: SDS Moms Raise $627 for SDSF!
by Stephanie Gregoretti & Lauren Livengood
With Rare Disease Day approaching this month I was looking for a way to help spread awareness and raise money for Shwachman-Diamond Syndrome Foundation . . . What could I do that wouldn't require me to leave my house or be away from my son?  I was so frustrated.   One thing I love about our SDS community is how even though most of us never met, we are all there to support each other and make a difference.  
        - Stephanie Gregoretti

 
Several months ago, I began a small business adventure with KEEP Collective jewelry. . . . Through an online Facebook event, I promoted a special bracelet design to honor SDS patients or anyone fighting a medical battle.  I also shared SDS and Rare Disease Day facts in several posts. . . . The fundraiser was extra successful thanks to fellow SDS mom Stephanie Gregoretti. . . . We're so pleased that the collaboration brought in a great amount of donations for the Shwachman-Diamond Syndrome Foundation, and we really enjoyed working together on the project!
            - Lauren Livengood

Spotlight on Chilton Price
"The game of golf has allowed our child to experience successes and failure.  We have never used his diagnosis as an excuse or a crutch. . . . Golf became more than just a game [for Chilton]. Playing golf was a relief for the whole family. . . . Through all the blood transfusions, bone marrow aspirations, and doctor visits, the course was a place to escape and relax as a family."
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If you'd like to share a fundraiser or some family news or updates, email Christian at christiandelre@shwachman-diamond.org .


                  Welcome New SDS Families
Odessa, MO
Grand Haven, MI
Fletcher, NC
Liverpool, United Kingdom
Newry, Canada
Thank You for Your Donations
Donations received between Oct. 25, 2016 - Feb. 20, 2017

James Knop
Donna Neuberg
Stacy Spires
Summit Lane Faculty Fund
Honey Densen
Mark Tantimonaco
Seth Corey
Oscar Padilla
Peter Dachille
Carol Reed
Stephanie & Wendell Stephenson
Judy Audenberg
Kathleen Schaffer
Diana Gutierrez
Kim & Miles Barrett

Thrivent Choice

In Honor of Jessica Bodron - Timothy & Joni Bodron, Joan Meister 
In Honor of Troy & Kelsey DeBoer - Cornelius DeBoer
In Honor of Gracie VanBrunt - Brian Condon, Ronald Buell, Malcom Walsh
In Honor of Roman Shen - Virginia Molkentin, Todd Ring, Booster
In Honor of Collin Brown - Morris & Judy Salter
In Honor of Marissa Avroch - Samuel J. Preston Elementary School, Margaret Canonico, Rose & Frank Canonico, Carol & Anthony Canonico 
In Honor of Anthony Gregoretti  - Peter & Stephanie Gregoretti, Thomas & Anita Gribben
 In Honor of Anthony Del Re - Karen Fanizza, Dina & George Bednarczyk
In Honor of Tavi Erni & Family - Tammi Sebastian, Stephanie Liebert
In Honor of Jordyn Elizabeth Zajac - Pamela Hartshom
In Honor of Wade Wachter - Wade's World, Dreyer Electric, Olympic Steak House, Terry Duvall
In Honor of Brian & Kelsey Richards - Melissa Richards
In Honor of Rylie Laber - Anonymous Donation, Victoria Jade Design
In Honor of River Pulido - Colton Flynn
In Honor of Joe & Jonathan Wall (In Memory of Elinor Roden, Wendy Hayes, Jane Clayton) - John & Joyce Wall
In Honor of Chilton Price - Larry & Alice Brown, Linda Price
In Honor of Nathan Grenell - Nicole Ceparano
In Honor of Leif Foy - Nicole Foy
In Honor of Toby's Crew - Oscar Padilla, Mark Stuve
In Honor of Ralphie Raiola - Teresa Pugliese
In Honor of Seven & Kath Shortlidge - Millie Cassidy
In Honor of Noah Valentine - Tanya Diaz-Ruiter
In Honor of Keegan Brice - Angela Brice
In Honor of Shannon Stewart - Darrell Sewart
In Honor of Guillana Mason - Danielle Haag, Ryan Masturo
In Honor of Makenna Gay - Christin Barkemeyer
In Honor of Ann Sander - Ted Dahlman
In Honor of Sebastian Abel - Cynthia Peiche
In Honor of Emily & Kelsey Jenuwine - Center Line Lions Club
In Honor of Natalie Livengood - Darlene Meyer
In Honor of Anthony Mazzella - Michael Bertschi
In Honor of Rick Feiner - Jennifer Wachter
In Memory of Michele Ellebracht Mowery - Brian & Amber May


In Memory of Sarah Kilby  - Laurie Stenovitch, David Eaton, Debra Brown, Michael Lochhead, Joan Anderson, Joan Mowery, David Achenbach, Jean Leavitt, Jane Atticus & Family, Elisa Mills, Daniel Picciardi, Rosemary Shea, Lee Bingham, Paul Buzzotta, Lynne Carrazza, Margaret Franks, Duoc Nguyen, Brian Lyman, Nicole Witherell, William Kenmnitzer, Scott Hartwell & Family, Mary Cody-Kenney, Caroline Hocking, Gary Goodhile, Heidi Junghans, Edward Azzaro, Phil Gibson, Dennis O'Nell, Joseph Casasanto, Tyler Kilby, Rebecca Haines, Heather Shortlidge, Elizabeth Smith, Helen Rosca, Helene Dowd, Jacqueline & Gary Gothing, Richard Miller, John & Marylin Arrigan, Norma & John Clayton, Danette & Steven Aldi, College of the Holy Cross, Stephen & Ginger Lavache, Heidi Senecal, Debra King, Joseph & Ann Giacchino,  Barbara Jo Vanderkraats, Pine Street Construction, Inc., Arnold E. Reiter, LL, Cumberland Municipal Employee FCU, Lindoln Pediatric Association, Inc., Dan Kilby, Carol Waddington, Mary Hill



Rare Disease Day Donations

Jennifer Wachter
Terry Duvall
Yvonne Kurzlow
Kate Soza
Sandra Gutierrez
Quan Lam
Joan Mowery
Eva Contrerus
Aurora Talavera
Dina & George Bednarczyk


Raffle Ticket Purchases

Darlene Meyer
Clarinda Copeland
Jennifer Wachter
Christine Murphy
Anita Gribben 
Michelle Grenell
Stephanie Pilla
Karen Callahan
Rochelle Pruneski
Joan Mowery
LuLaRoe Brittany Moore
Meredith Garrett
Fara Lupescu
Michele Baker
Rachel Gregoretti

Thank you for your monthly donations

Steven Kilcrease
Deana & Jeffrey Valiante
Anthony Porrata
Maria Hall
Vickie Cox
Andrea Wolf
In Honor of Wade Wachter - Jennifer Wachter
In Honor of Marissa Avroch - Dianne Moschetta
In Memory of Michele Mowery - Joan & Greg Mowery 

 
Fundraisers

T-shirts, Car Magnets, Pins, Charms, Bags

Yahan Xie
Richard Kaiser
Mary Balint
Tim Bodron
Allison Emi
Greg Fletcher
Beverly Smith
Ashley Largent
Vicki Brown
Nicole Foy
Joan Mowery
Jennifer Avroch
Stephanie Pilla
Joni Bodron
PS 36 - Staten Island, NY P.T.A. Holiday Fair

Ongoing Fundraisers

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.
                
Shop at the SDSF Online Store
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!
Shwachman-Diamond Syndrome Foundation
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

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!
Shwachman Diamond Syndrome Foundation
888-825-7373
info@shwachman-diamond.org
www.shwachman-diamond.org