Greetings!
The end of 2019 is fast approaching. It has been a very busy year. We want to share some of the accomplishments of the year with you. We have expanded the Board of Directors, supported the SDS family meeting in Boston, and updated our educational literature and translated 2 of them into Spanish. We have started the SDS Live podcasts and also began our Super Sibs program which will be further expanded in 2020. We also had a very successful Rare Disease t-shirt fundraiser as well as the lovely Christmas ornaments fundraiser. We have just completed a research grant for a doctor in the Netherlands. We are also very proud of our quarterly newsletter. None of this would not have been possible without the support of our fabulous families and the hard work of our very dedicated Board of Directors.
So from all of us, we wish each of you a wonderful holiday season and a healthy and Happy New Year,
Joan, Mary, Bryan, Nicole, Michelle, Christian, Stephanie, Jenni, Scott, Carolina, and our Executive Director, Pam.
Joan Mowery
President
Shwachman-Diamond Syndrome Foundation
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Camp Sunshine SDS Week Dates Announced
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SAVE THE DATE: JULY 12-17, 2020
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The dates for SDS Week at Camp Sunshine were announced back in November. If you haven't done so, click the link below for the forms that you need to complete.
Camp Sunshine is an amazing place where we bring together the leading doctors along with our families to help share the latest information on SDS while the children have one of the best weeks just being kids.
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This season Nicole and Michelle brought a project to life that we have been working on for awhile. One day, in a dated motel, in some random city in Ohio… Michelle had an idea. This idea was rather simple, it was to have a basic SDS - 101 live video chat for new patients and families who may need the most basic of information. One live video, that’s all. That very same day, Nicole happily jumped in to help with both feet. The next day, Nicole had 40 guests lined up and we had a logo. This clearly had just become Texas-sized.
SDSF Live is a groundbreaking idea. We haven’t seen any other organizations utilize anything like it. A live video that allows the audience to interact and submit questions to experts all across the field of Shwachman-Diamond Syndrome. We currently have behavioral therapy specialists, hematologists, geneticists, transplant families, published authors, psychologists, and so many more professionals ready to help with this project. This gives families, friends, and their communities a chance to interact with the top people who treat the many ailments of SDS.
Our hope for this project is that we can reach the community in a way that we haven’t been able to before. These shows will also serve as a resource library for the community as they need them. Past shows are available on the foundation website, YouTube, and soon to be converted into podcasts. With a disease as rare as SDS, it often feels very isolating and alone. We wanted to be able to build a round table discussion between families who understand SDS up close and personal and the medical professionals who know the broad aspects of this rare disease. By leveraging the social media platform with this talk show format - our goal is being accomplished in a warm inviting way. Hope you tune in to a show soon!
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I was diagnosed with SDS when I was six months old. Until recently, I was followed by Children’s Hospital of Philadelphia (CHOP). I struggled a lot with SDS, more so when I was child. It started off with pancreatic insufficiency. I took what is now known as Creon until I was sixteen years old. When I was twelve, my legs were severely bowing, so I started a number of orthopedic surgeries to correct this issue. My legs were surgically broken, I was put in a body cast, and went to therapy ten different times until they were finally straight. I’ll always have to get my blood levels checked and do the yearly bone marrow aspirations, but other than that, I can live a full productive adult life with no daily medication needed. I started college, got my first job, and learned how to drive all when I was nineteen. When I was twenty-one years old I had obtained a degree in psychology, found a job in my field, and secured my career. I have never looked back!
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10th Annual SDS International Congress
April 2020
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ASH
American Society of Hematology
December 7-10, 2019
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I attended ASH for the first time this past December. As a team, the members of the Board worked really well together. We were able to hand out about 600 SDS information cards to doctors and researchers from all over. We talked to people from over 20 countries and I learned that China has a hospital with over 60 SDS patients; this surprised me. I was also able to network with three different pharmacy groups, leaving them our contact information in order to try and help our patients with meds. I found it to be amazing how much money the drug companies put into this conference just to get the doctors to speak with them. It was great to see the reaction of some of the doctors when they met Scott, an adult patient and Board member. I can't wait to go again to continue the conversation about SDS. I appreciated this opportunity. It was a lot of work, but hopefully it will pay off in the end!
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From Left to Right: Scott Miller, Joan Mowery, Mary Balint, Pamela Miller
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From Left to Right: Mary Balint, Joan Mowery, Dr. Seth Corey, Scott Miller
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From Left to Right: Scott Miller, Joan Mowery, Mary Balint
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SDSF was been given a unique opportunity to provide new information about our disease at this years’ ASH (American Society of Hematology Meeting). Drs. Myers and Shimamura prepared the linked article for us. It appeared in the ASH DAILY NEWS each day of the meeting. This newspaper was distributed to all of the more than 20,000 attendees. We are hopeful that this will focus more attention on SDS.
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SDSF Holiday Ornament Fundraiser
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SDSF is excited to announce that we have created an ornament for the holidays! Our hope for this project is to spread awareness and support while raising funds to help find a cure. Our goal is to create a newly designed ornament each year.
Give to friends, doctors, nurses, therapists, teachers, and family, while giving back to SDSF.
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San Jose, CA
Schwaigen, Germany
Melvin, MI
New Port Richey, FL
Russellville, AL
Wichita, KS
College Station, TX
Cincinnati, OH
Plovdiv, Bulgaria
Pinecrest, FL
Spring, TX
Leuven, Belgium
Walla Walla, WA
Molendinar, Queensland
Trzebieszewo, Poland
Bowmanville, Ontario
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Thank You For Your Donations
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Donations received between September 1, 2019 - December 18, 2019
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Roy Hohn
Diane Patzer
Randall Keyes
Alison Bertuch
Stephanie Gregoretti
Katya Perez
Coty Zahnle
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Jason Kiss
Maleeha Mashiatulla
PayPal Giving Fund
Your Cause, Pacific Gas & Electric
United Way Greater Niagara
Dell Giving
Evereve, Inc.
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In Memory of Craig Smith - Cyndi Smith
Honor of Marissa Avroch
- Rose & Frank Canonico, Catherine DiFalco,
In Honor of Jess Bodron
- Tim Bodron
In Honor of Scott, Meagan, Jonathan Miller
- Ann Macke, Jamie Macke
In Honor of Camden Kilcrease
- Angela Simoneaux
In Honor of Keller Wilson/Keller's Cookies
- Kyle Wilson, Stacy Spires, Zachary Edick, Tonya Gloyer, Mark Wiseman, BT Gorman, Amy Owens, Molly Harper, Jeffery Miller, Gregory Gossett, Rowena Hartman
In Honor of Anthony Del Re - College of Staten Island Men's Soccer Team
In Memory of Dale Robbins - Claudine Hogan, Pamela Hartshorn
The Many Supporters Through Facebook Fundraisers
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Thank you for your monthly donations
Deana & Jeffrey Valiante
Andrea Wolf
Indro Hoffmann
Maria Hall
Keung King Man James
Lisa Kilcrease
Anthony Porrata
Sylvia Kuleszo & David Misenhimer
In Memory of Michele Mowery
- Joan & Greg Mowery
In Honor of Jonathan and Joseph Wall - Joyce Wall
In Honor of Jake Walden - Julie Walden
In Honor of Wade Wachter
- Jennifer Wachter
In Honor of Marissa Avroch
- Dianne Moschetta
In Honor of Keller Wilson
- Stacy Spires
In Honor of Scott, Meagan, Jonathan Miller
- Pamela Miller
In Honor of Riley Laber
- Mary Balint
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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, President
Mary Balint, Secretary
Bryan Sample, Treasurer
Christian Del Ré, Communications Chair
Stephanie Gregoretti, Fundraising Chair
Nicole Shen, Membership Chair
Jenni Wachter, Webmaster
Carolina Cordova
Michelle Grenell
Savannah Lillywhite
Scott Miller
Pamela Miller, Executive Director
Other Amazing Leaders
Joyce Wall - Anna Angel Basket Coordinator
Maura Donahue - Advisor to the Board
Jess Johnson
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:
We would love to hear from you and share your stories!
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Shwachman Diamond Syndrome Foundation
888-825-7373
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