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HAPPY NEW YEAR!
I hope everyone had a great Holiday.
SDSF had a busy 2018, with the Scientific Congress, the Family Conference at Camp Sunshine, and the ASH (American Society of Hematology) Conference.
We are looking forward to an exciting 2019.
As you have already read, Christine James has resigned as SDSF president. We thank her for her hard work and dedication, and wish her only the best.
We also would like to announce that Pam Miller is stepping into the role of Executive Director of SDSF. Pam, who has been serving as SDSF secretary, is well qualified for this position with a degree in political science, and years of experience in management and bookkeeping.
Pam will be handling the day to day activities of our organization.
Lastly, the dates have been announced for the next SDS Scientific Congress. The dates are April 6 to 9, 2020, in Cambridge England.
Stay warm! Spring is only 2 months away.
Joan Mowery
Acting President
Shwachman-Diamond Syndrome Foundation
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MEDICAL CONFERENCE UPDATES
Scientific Congress - April 2018
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Hope, Gratitude, & Empowerment
by Savannah Lillywhite
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Hope, gratitude, and empowerment. Those were my biggest take-aways from attending the 9th International Congress on Schwachman-Diamond Syndrome last April.
My story is a little unique in that I have had a child pass away from complications of having SDS and then a few year later having another child with SDS. In 2012, my husband and I had a beautiful baby boy named Andrew who spent his entire action-packed 3 ½ months of life in the hospital until he passed away due to respiratory distress as a result of Schwachman-Diamond Syndrome. . . . I share this only to convey that I went into this conference having fully experienced what SDS can cost families but also with hope for Lincoln and other children and adults with this disease, as well as a desperate need to not feel powerless. . . .
Being present for the conference gave a unique opportunity to ask general questions after presentations as well as specific questions related to my child during break times. . . .
Moreover, attending the conference empowered me to put more effort into fundraising. . . . At the end of each presentation, the presenters would thank various organizations, and SDSF was frequently on the screen being thanked for their support.
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ASH
(American Society of Hematology)
December 2018
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The American Society of Hematology annual meeting was held in San Diego in early December.
SDSF is proud to have had a booth and provided medical information to some of the 25,000 attendees from all over the world.
We spoke to physicians from many countries including China, Japan, Russia, Bulgaria, and others.
This is a huge and extremely busy conference. There are 3 full days of Educational and Scientific meetings lasting from 7:00 am to as late as 9:00 pm.
Dr. Kas Myers presented a poster on findings in the SDS Registry.
ASH provides us with a unique opportunity to speak one on one with physicians that we normally wouldn't have. We will continue to share the research from ASH and our SDS studies with you.
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HENLEY'S STORY
by Jess Johnson
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In April 2017, our family traveled over 500 miles one way to Minneapolis, MN to begin chemotherapy and prepare Henley's body for a bone marrow transplant. It was frightening and emotional. . . . Henley and our journey with her has been the blessing we didn't know we needed. . .
Henley was born May 26, 2017, at 40 weeks and 1 day. About 24 hours after she was born, we noticed her respirations seemed really fast. She was moved to level 2 nursery care and a pediatrician ordered lab work and chest x-rays, which we were told were normal. . . doctors told us it was transient tachypnea of the newborn, also known as TTN. . . .
Henley's pediatrician ordered blood work . . . A
lthough a number of things were outside the "normal" range, he said he didn't believe there was anything wrong. According to counts she was anemic, had elevated liver enzymes, and her ANC was 0. . . . I was in tears by the end of the conversation and called Kyle. I was certain something was wrong with Henley and that something was being missed. . . .
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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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Born in Cuba and eventually immigrating to Brooklyn, Michael was a resident of Miami in recent years. Michael passed on January 27, 2018, survived by his younger brother, Aron, and parents, Clara and Samuel. Michael was 41 years old with liver and kidney failure. Michael loved music, movies, and wearing hats. He especially loved movies with sharks, like Jaws.
The foundation would like to thank his family for raising over $1240 in memory of their beloved Michael. Our hearts are with the Epstein's in their time of grief.
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In 2019, we are looking to expand our board! If you are interested in joining us, email us at [email protected]. Tell us what you would be interested in doing and how you can help! Deadline - January 31st.
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Rare Disease Day
February 28, 2019
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February 28th, 2019, is Rare Disease Day! We will be posting an online, sharable Fundraiser. We encourage you to share or start your own to help raise awareness! Below are the links to the Rare Disease Day website to download images and frames for your social media account.
Shari St Hilaire, an SDS mom, has so graciously put together a T-Shirt Fundraiser for Rare Disease Day with all proceeds going to SDSF. The shirts were beautifully designed on front, including names of SDS patients on the back, for those who wished to participate. Orders can be placed starting the last week of January. Visit our website and social media pages for more info. Below are the images of what the shirts will look like!
Remember to Share Your Rare to our Facebook and Instagram pages!
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Recurring Monthly Donations
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We would like to thank everyone for their fundraising efforts and making 2018 so successful! We had everything from Facebook fundraisers, t-shirt sales, casual days at work, to golf outings, and galas!
Let's kick off the new year on the right foot! Did you know you can schedule automatic monthly donations?
To set up monthly donations, just go to
www.shwachman-diamond.org
and click "
donate
." Choose an amount and check the option for "Make this Recurring (monthly)" via PayPal. It's that simple!
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Monthly Fundraising Ideas
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This year we will be sharing a monthly Fundraising idea on our website and social media accounts! Be sure to follow us on Facebook and Instagram! Visit the Fundraising section of our website for up to date info.
Have a new fundraising idea? Planning a fundraiser this year? Not sure where to start? We are open to all suggestions and are here to help guide you, give you specific tools and use of our logo to maximize your efforts.
To
request use of our logo and for fundraising assistance please send an email to [email protected]. Lets work together and SUPPORT each other in our goal to fund RESEARCH and find a CURE.
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Cure SDS Gala
March 3, 2018
by Gina & Christian Del Re
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Last March our family organized a fundraiser for SDSF on Staten Island, New York. With over 150 raffles, donations, and 125 guests, we were able to raise approximately $10,000!
This was a great undertaking, mostly because we did most of the work ourselves, with help from our friend Samantha, who really took the lead on securing donations and reaching out to organizations for raffles. At the event, we had a DJ, a comedian, and Be the Match came to swab our guests for their bone marrow registry.
To make the evening even more special, a number of local SDS families came out to help us raise awareness! It was so special to see all our "camp families" and to be able to get together around this cause!
Watch & Share the Video Below to Help Spread Awareness of SDS & Our Need for a Cure!
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SDSF Has a New Address! Update Your Address Book & Contacts!
Shwachman-Diamond Syndrome Foundation
P.O. Box 6723
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Stay up to date with SDSF! Follow Us on Instagram at
If you'd like to share a fundraiser or some family news or updates, email Christian at
[email protected]
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Mission Viejo, CA
Waiouru, New Zealand
Tewksbury, NJ
Dover, KY
Shelbyville, IN
Lethbridge, Canada
Langdon, Alberta Canada
Bolton, Lancs Canada
Edinburgh, Scotland, Canada
Filderstadt, Germany
Surprise, Arizona
Columbia, South Carolina
Dallas, Texas
Waterville, Ohio
Crystal Lake, Illinois
Colorado Springs, Colorado
Jacksonville, Florida
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Thank You For Your Donations
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Donations received between Dec 15, 2017 - January 20, 2019
Javier Lopez Maestro
Brooke MacDonald
Brianna Minshew
Roukiatou Ouedraogo
Vincent Pugliares
Darrell Stewart
Samantha Stogsdill
Laurie Stenovitch
Mike Truesdale
Amanda Jacobs
Alvina Schneider
Stephanie McGillis
Alison Bertuch & Douglas Hetzer
Julie Catalano
Samantha Lipnack
Katie Delgado
Mary Balint
Tama & Wayman Chunn
Laina Cooney
Johathan Garcia
Matthew Ilard
Keung King Man James
Erin Kassab
Dennis Parad
Carol Reed
John Robinson
Patricia Walker
Edward & Ericka Zinser
Benevity Giving
DELL - Your Cause LLC
ECG Management Consultants
Key Bank Foundation
Richmond Rotary Charitbale Foundation
Evereve, Inc.
East Greenwich Township School District
Morgan Stanley Cybergrants Inc.
Amazon Smiles
United Way of Rhode Island
NY Life - Your Cause LLC
Network For Good
PayPal Giving Fund
Prairie Farms Dairy, Inc.
Target Corporation CyberGrants
Thrivent Choice - John Meyer, Rodney Wachter,
Sandra & Keith Bachmann
Truist
Steel City Pops HTX, LLC
United Way of Greater Niagara - Judith DeMallie, Sharon Lamb,
Wendy Pellow
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In Honor of Travinor Jean Erni
- Daryl Witten
In Honor of Gracie Fund -
Paul Rogers & Rosa Lasaosa
In Honor of Jessica Bodron
- Tim & Joni Bodron, Joan Meister, Tammy Broussard, Precision IBC, Inc.
In Honor of Taylor Krausen
- Kristen Krausen
In Honor of Roman Shen
- Dena Breslin, Nicole Ceparano, Susan Cox, Aaron Damm, Timothy & Mary Hill, Sara Ekins, Mona Kavimullah, Frances Rigney, David Smith
In Honor of Michael Billings
- David Misenhimer, Marsha Misenhimer, Karin Hampton
In Honor of Maggie Collins
- Anne Danilak, Stephen & Edeltraud Bradley
In Honor of Henley Johnson
- Sheryl & John Homan, Todd & Carla Leland
In Honor of Chilton Price
- Linda Price
In Honor of Johnse St. Hilaire
- Sandra St. Hilaire
In Honor of Anthony Gregoretti - Helen Giannone, Jason Pilla, Mana Fasulo, Michael & Irene Sweeney
In Honor of Addie Jacobs
- Jessica Landry
In Honor of Carson Turkley
- Deborah Miller
In Honor of Giuliana Haag Mason
- Danielle Mason
In Honor of Marissa Avroch - Rose & Frank Canonico, Catherine DiFalco, Maria Dininni-Avroch
In Honor of Ronin Porrata - Anthony Porrata
In Honor of Camden Kilcrease
- Angela Simoneaux
In Honor of Collin Brown -
Karen Prather
In Honor of Emma Taylor -
Paul Taylor
In Honor of Jake Walden -
James Amato
In Honor of the Zinser Family -
John & Jennifer Devlin, Edward & Erika Zinser, Albert Heurich & Erika Zinser
In Honor of All of our SDS Families & Volunteers
- Harry & Pamela Hartshorn, Seth Corey
In Honor of Emily & Kelsey Jenuwine
- Center Line Lions Club
In Honor of Troy & Kelsey DeBoer -
Lois DeBoer
In Honor of Wade Wachter - Brenda Thomure, Terry Duvall, Jenny Macke, Wade's World Fundraiser, Amy Neels, Valerie Petzoldt, Jennifer Spieler,
Olympic Steak House
In Honor of Teddy Jeary -
David Williams
In Honor of Awesome Addie -
Awesome Addie's Foundation, Inc. (Melvin & Amanda Jacob)
In Honor of Amelia Frascinella -
Arlene Basselini, Donna Skodmin
In Honor of Joan Mowery -
Patricia Matula
In Memory of Michelle Mowery -
Joni Bodron
In Memory of Luke Denson
- Julie Allison, Gene & Sally Barr
In Memory of Lucas Soloman Fletcher - Greg Fletcher
In Memory of Sarah Kilby - McCourt Middle School, Mary Contino, Noreen Landry, Brooke MacDonald, Ann & Gregory Riley, Elizabeth Smith, Mary Thies
In Memory of Mildred Beeler "Nana" - Mark & Phyllis Itzkowitz
In Memory of Anthony Del Re - Yvonne Kurziow, Patricia McDonnell, Joan Perretti, Barbara Sacchi, Jennifer Tagliavia, Peter Dachille
In Memory of Olympia Pasquale - Bobby & Mae Britt, Judith & Mark Zook
In Memory of Noah Burkhurt - Nicole Ceparano
Rare Disease Day 2018 - Theresa Leonarczyk, Arthur Pearson, Carmen Porrata
Cure SDS Gala in Honor of Anthony Del Re
Melissa Cantin, Denise Esposito-Rider, Josephine Johns, Brenda Lipnack, Christopher & Stephanie Lorrenzo, Salvatore & Susan Lupia, Bennett & Joann Minko, Carmelo & Phyllis Modica, JVN Restoration Inc, One on One Physical Therapy, Jeanette DiBiase, Susan Adams, Ofra Altman, Martin Boxer, Peter Dachille, Carole Del Re, Mary Giordano, Sandra Jacques, Kristen Krausen, Elliot & Linda Levy, Barbara Lodato, Suzanne Mogavero, Michael Paliseno, Justine Pasaturo, Tim Shananhan & College of Staten Island Women's Basketball Team, Staten Island Council 1662 Knights of Columbus, The Caiazzo Family, Peter Dachille, Patricia DeMatteo, Natalie Espinoza, The College of Staten Island Foundation
The Many Supporters Through Facebook Fundraisers
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Thank you for your monthly donations
Deana & Jeffrey Valiante
Maria Hall
Andrea Wolf
Calah Beckwith
Julie Walden
Indro Hoffmann
Joyce Wall
In Honor of Wade Wachter - Jennifer Wachter
In Honor of Marissa Avroch - Dianne Moschetta
In Honor of Keller Wilson - Stacy Spires
In Memory of Michele Mowery - Joan & Greg Mowery
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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
Joan Mowery, Acting President
Bryan Sample, Treasurer
Ed Bickel, Creative Media Chair
Christian Del Ré, Communications Chair
Stephanie Gregoretti, Fundraising Chair
Nicole Shen, Membership Chair
Jenni Wachter, Webmaster
Pamela Miller, Executive Director
Other Amazing Leaders
Joyce Wall - Anna Angel Basket Coordinator
Maura Donahue - 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:
[email protected].
We would love to hear from you and share your stories!
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