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Another summer has flown by and another school year is about to begin. I hope all of you have made many wonderful memories to last a lifetime. With the numerous doctor'
s appointments, school days, illnesses, and possible hospitalizations during the year, we look forward to the long summer days filled with fun and laughter. School brings us extra worry and stress about germs, cleanliness, and illnesses. I urge you to not lose the fun and laughter during the school year. Mental Health is a huge factor in keeping "it" together and it affects the whole family's outlook on life and its struggles. It is important to discuss with the school nurse, teachers, administrators, and other parents about SDS and how germs and illnesses affect a student with SDS. If you need any information please contact us. I wish everyone a successful and fun school year!
SDSF is participating in several exciting events in the near future. The SDS Registry is hosting a Family Day at Cincinnati Children's Hospital Medical Center in October. The American Society of Hematologists yearly convention is in December, and SDSF is a sponsor for the International Scientific Congress in April. I am looking forward to learning and reporting the advances in SDS research.
SDSF is able to attend, spread awareness, and support research through the generous donations received. Donations are vital to continue granting research projects which lead to successful treatments and hopefully a cure. Please consider hosting a fundraiser, or contribute to SDSF through a matching funds program so we can continue the important research our SDS family so dearly needs.
Would you like to contribute to the newsletter? Does your child have an art project or poem you'd like to share? What would you like to see in the next newsletter? Email us at info@shwachman-diamond.org.
Looking forward to hearing from you!
Sincerely,
Christine James
President
Shwachman-Diamond Syndrome Foundation
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To All Our Families and Friends in Texas, You Are in Our Thoughts and Prayers
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SDS Family Day at Cincinnati Children's Hospital
Saturday, October 14, 2017
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Cincinnati Children's Hospital, along with the SDS Registry, will be hosting a free day of information, conversation, and fun on October 14th of this year.
The day will begin at 11:30am with a Meet and Greet Luncheon provided by SDSF. The afternoon program with begin at 1:00pm and will feature presentations and discussions with Kas Myers, MD, Akiko Shimamura, MD and Siobhan Keel, MD, among others. Childcare is being provided free of charge.
The day will end with an evening at the Cincinnati Zoo from 6:00 to 9:00pm.
This is a fabulous opportunity to hear the most comprehensive information about SDS. We hope any family within traveling distance will take advantage of this event.
We hope to see many of you there!!
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How to Communicate About SDS and Our Children's Needs?
by Christian Del Re
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September can be a time of anxiety in any home with the start of a new school-year. Kids are nervous, parents are nervous, and between battling to get back into school routines, buying all the supplies and clothes, we also have to worry about whether or not our child's teacher knows what SDS is and what special needs have to be met each day. . .
For the past two years my wife has scheduled an appointment with the school principal, and before the start of the year, she meets with the administrative team as well as Anthony's teachers to give them the SDS 101 talk and to go over what special considerations Anthony needs while in school. . .
I have attached some of the documents we use each year; feel free to adapt and edit them for your own family. Here is also a check-list of important things you may want to do before the start of the school-year. . .
SEE CHECKLIST SCHOOL LETTER MEDICAL INFO PRESCRIPTION & MEDICAL INFO
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MEDICAL CONFERENCE UPDATES
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ASH
(American Society of Hematology)
December 8-12, 2017
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The American Society of Hematology will be holding their annual meeting from December 8 to the 12th of this year in Atlanta, Georgia. This event attracts both pediatric and adult hematologists from all over the world. There were over 22,000 attendees last year.
This is a perfect opportunity for SDSF to educate physicians and researchers about SDS. We have the chance to personally speak to these physicians and researchers and provide them with medical materials, and stimulate interest about SDS in the medical and research communities.
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9th Annual Congress on Shwachman-Diamond Syndrome
April 8-11, 2018
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SDSF is extremely excited that the upcoming
International Congress on SDS is being held in the United
States.
This event is attended by physicians and researchers from around the world. It provides the opportunity for these attendees to share information and research about the causes and possible treatments for SDS.
We are proud to sponsor and financially support this
important meeting.
While adult patients and parents are welcome to attend, it needs to be stressed that this is not like our family conferences, where presenters use terms lay people can
understand. This Congress is primarily for medical professionals and you will be completely lost if you do not have a good understanding of medical terminology.
Also, although the organizers are making great efforts to keep costs down, there is a registration fee to attend.
We will advise when registration for the Congress is available.
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What I Miss Most About Camp Sunshine . . . .
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Time seems to fly by in the blink of an eye, but when one sits back and takes it all in, there are so many special moments that stand out in our minds.
This summer was a "campless" summer, and for our community, it means many of us will not have that face-to-face connection with someone else walking in our shoes and managing SDS on a daily basis.
Here are some of the responses:
Bridget Donnelly Collins:
I can't wait to see my SDS family. Next year I'm not going to stress myself out by trying to go to every session, and spend more time making friends.
Michelle Grenell:
I am so in need of a camp week. We miss everything. We miss laughing with people who just get it. Who make you feel okay to laugh with because they know how much you cry. Can't wait to see some of you in Cincinnati!
Camp Sunshine is such a special place and we thank them for all that they do!
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Fundraising Ideas Made Easy
by Stephanie Gregoretti & Jenni Wachter
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One of the most frequently asked questions when people contact The
Shwachman-Diamond Syndrome Foundation is, "How can we help?"
We understand Fundraising can sound overwhelming. You may ask yourself, How do I start? What do I do? Will I have the time? Will this be successful? These are all very valid concerns and we understand, so
this has encouraged the Foundation to help make it a little easier for you to help.
We are going to put out monthly fundraising ideas with some tools to get you started. You will find these ideas on our website
and in our newsletters.
Feel free to contact the foundation at info@shwachman-diamond.org at any time for help with your event or if you would like to share a fundraising idea with us.
Below you will find our first idea!
Get Comfortable and Help Find a Cure!
This is a great and simple Fundraising idea for your place of employment, local businesses, or even your children's school. Most people have heard of or participated in something like this before. Participants would get to dress down in exchange for a donation.
100% of the donations would go to the Shwachman-Diamond Syndrome Foundation to support Research and help find a CURE!
You can visit our website: www.shwachman-diamond.org for a customizable flyer that you can download and print for your event. It's that simple!
Stay tuned for more fundraising ideas!
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Stay up to date with SDSF! Follow Us on Instagram at
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Tyndall AFB, FL
Bend, OR
Oakley, CA
Northridge, CA
Huntington Station, NY
Warsaw, IN
Washington, DC
Aurora, CA
Bellville, TX
Miami, FL
Columbiana, OH
Des Moines, IA
Pullamallowa, NSW, Australia
Cambridge, MA
Forest Lake, MN
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Thank You For Your Donations
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Donations received between April 15, 2017 - August 23, 2017
Four Corners Community Chapel
David Misenhimer
Anthony Porrata
Lisa Smith
Rebecca Kolbel
Amaud Lagesse
Combined Federal Campaign
United Way of Greater Niagara
Morgan Stanley Cybergrants, Inc.
PayPal Giving Fund
Network For Good
Thrivent Choice
Amazon Smiles
Truist
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In Honor of Gracie VanBrunt
- Paul Rogers & Rosa Lasaosa
In Honor of Collin Brown
- Richmond Rotary Charitable Foundation
In Honor of Gulliana Mason
- Richard Schenk
In Honor of Tobias Padilla
- Oscar Padilla
In Honor of Roman Shen
- Nicole Ceparano, Alisha Nash, Melissa Krueger, Carolyn MacArthur, Alexandria Schmitt, DELL - Your Cause LLC, Robin Silverman
In Honor of Marissa Avroch - Rose & Frank Canonico
In Honor of Anthony Gregoretti - Stephanie Pilla, The Joey Foundation, Inc.
In Honor of Anthony Del Re
- Vito & Florence Roca
In Honor of Nathan McFarland -
Janie Silton
In Honor of Shaun Foy -
New Wave Enviro Products Inc.
In Honor of Shay Ballinger
- Matilda Jane Clothing
In Honor of Matthew Valiante (In Memory of Annette King) - Virginia & Charles Vaccaro, Deana Valiante, Carmela Ciliento
In Honor of Wade Wachter -
Allen & Sheryl Hotop, Olympic Steak House, Wade's World Fundraiser, Terry Duvall,
In Memory of Michele Ellebracht Mowery - Ed & Donna Fattes
In Memory of Sarah Kilby - Mary Thies
In Memory of Mildred Beeler "Nana" - Neil Shea, Linda O'Brien
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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 - Jennifer Wachter
In Honor of Marissa Avroch - Dianne Moschetta
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
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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