Greetings!
Spring has finally arrived. It’s a beautiful time of the year. Hopefully you have seen that we have had new members join our board. The entire board is working very hard.
We have several projects planned for this year. Among them, we are updating our written materials. New member Eszter is heading this initiative with other board members. We are also translating all our educational materials into Spanish, courtesy of our new board member, Carolina. Scott is working as a liaison for the teens and adult patients. We are very happy to have an SDS patient on the board. Savannah and Nicole will be attending the Living Rare, Living Stronger Conference in Houston the weekend of June 21st. They will be sharing what they learn in our next newsletter. Mary is working as our secretary and Michelle is working on family support and fundraising. The entire board is working to raise awareness of SDS.
We are also excited about the SDS Registry meeting on September 15th in Boston. We look forward to hearing new data from the registry, as well as the latest research and treatment information. I’m sure it will be a day full of information as well as a great time just visiting with other SDS families. We hope to see everyone in Boston.
Enjoy the nice weather,
Joan Mowery
Acting President
Shwachman-Diamond Syndrome Foundation
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On September 15, 2019, the SDS Registry will be hosting a SDS Family Day at Boston Children's Hospital.
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What is the Shwachman-Diamond Registry?
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The SDSR is a research organization dedicated to developing better treatments for and improving the health of patients with Shwachman-Diamond Syndrome (SDS) and Shwachman-Diamond-like (SDS-like) syndromes. The Registry works to accelerate SDS research by collecting and studying clinical information and samples from patients and their family members, facilitating high-impact research collaborations, and providing education. The SDSR’s ultimate goal is to cure SDS!
Why Should I Join the SDS Registry?
SDS is a rare disease, and medical information is scarce. By participating in the Registry, you will be contributing invaluable medical information about SDS and SDS-like syndromes.
Together, we can beat SDS!
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Icing Smiles
Icing Smiles is a nonprofit organization that provides custom celebration cakes and other treats to families impacted by the critical illness of a child. They understand that the simple things, like a birthday cake, are luxuries to a family battling illness. Their goal is to create a custom cake for the ill child, or their sibling, that provides a temporary escape from worry and creates a positive memory during a difficult time.
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Feel Better Friends Project
Feel Better Friends are handmade dolls stuffed with love and well wishes, crafted by volunteers and donated to children battling cancer and other illnesses.
These well loved dolls are custom made with the child’s likeness in mind, matching eye and hair color, and replicating the child’s favorite outfit to the best ability. They can even be made bald like the child with a little matching wig too! They have almost 200 volunteers in over 6 countries eagerly making dolls for children in need.
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I Run
IR4 fosters relationships. They see runners and buddies alike experience the profound power of encouraging and being supported by people who were once perfect strangers. Running can just be about health or it can be about dedicating miles and creating awareness for those with special needs whose conditions span the spectrum from total physical disability, to developmental delays, to autism spectrum disorders, as well as a myriad of rare conditions.
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Victory Junction
Victory Junction is a medically safe, yet exhilarating camp, that challenges children who have a serious medical condition to try things they never imagined possible. As they conquer activities like zip lining and archery or experience bowling, fishing or swimming, children build confidence that will shape how they view the rest of their lives.
The magic happens on a lush 84 acres in the rolling hills of Randleman, North Carolina near Greensboro. Once children pass through their gates, the boundaries and limitations they live with on a daily basis disappear and they simply concentrate on having fun! That’s when they shine!
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Team Impact
Team IMPACT is a national nonprofit that connects children facing serious and chronic illnesses with local college athletic teams, forming life-long bonds and life-changing outcomes. Team IMPACT creates a network of support for children; a group that is in their corner to support and encourage them during their highs and lows. Children are officially drafted to the team, and become full fledged members, attending practices, games, team dinners, events and more.
Children gain support as they face medical challenges, while student athletes gain a whole new perspective. Through the power of team, kids and student athletes accept, motivate, and inspire one another — changing the game for everyone involved.
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Beads of Courage
Beads of Courage provides innovative, arts-in-medicine supportive care programs for children coping with serious illness, their families and the health care providers who care for them. Upon enrollment each child is given the Beads of Courage bead color guide with a detachable membership card. Their Beads of Courage journey begins when each child is first given a length of string and beads that spell out their first name. Then, colorful beads, each representing a different treatment milestone are given to the child by their professional health care provider to add to their Beads of Courage collection throughout their treatment.
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Rylie's Experience with Team Impact
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In October 2016, Rylie, who was four years old at the time, was drafted onto Stony Brook University’s women’s soccer team. It was love at first sight for all of us involved, Rylie, the players, and the coaches. . . . Rylie was given a locker in the locker room and she wears her uniform proud at all the games. During the home games she goes up with the team captains to meet the referees and other team captains, she tosses the coin with the ref and walks out on the field with the starting lineup. . . . If you have the opportunity to join Team Impact, I would say jump on it.
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Our Experiences with Icing Smiles
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We became aware of Icing Smiles at the end of Anthony's Make-a-Wish trip. We were given a package of materials from Give Kid's the World and inside was information on Icing Smiles. They provide complimentary dream cakes for the sick child's birthday each year and they also provide a fun cake for the siblings so they also feel included. When you reach out to Icing Smiles, they contact a local baker in your area who has volunteered to bake a cake for your child. Once in contact, the baker and the family work out the details for the theme of the cake and help make their dreams come true. We are so thankful for Icing Smiles and the volunteers in our community who have made Nicholas & Anthony's birthdays just a little more special.
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Prepare to Fight: Living Through Bone Marrow Transplant with a Child
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Kyle and I sat in the living room, I felt numb. Henley and I were leaving in just a couple days, Kyle and the twins would join us a few days later. Transplant was just over a month away. Were we prepared? Was I ready to leave? Had we thought of everything?
Many people told us, transplant wasn’t something we could really prepare for. I disagreed. We had to try, we were preparing to fight for Henley’s life. We would kill her existing bone marrow, expect her to live through that and pray new cells, donated by a young man in Germany, would grow in her body and give her a new life.
If you know the possibility of transplant exists in your child’s future, prepare for the fight now. When the time comes, implement the plan. It won’t be perfect, but it will feel a little less scary. You will feel more confident, and you will be your child’s best gift . . . [There] are six things to consider . . . . Although it may seem painful to imagine your child going through transplant; knowledge is power, prepare and train for this fight. Take control.
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Thank you to everyone who held a fundraiser, supported SDSF by donating to our organization, or held an event that brought awareness to SDS in your community.
A Special thanks to Shari St. Hillaire for designing the amazing t-shirt! The design with all the names helped bring us all closer together to raise awareness about SDS. Thank you again!
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Our Stories of Rare Disease Day
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by Pam Miller
My son's school let him sell SDSF wristbands for $2. Then, for Rare Disease Day, the students who bought a wristband were able to participate in a 'White Out Day," which is basically a dress down day wearing a white shirt. This is a coveted item at his school since they have a strict dress code.
Most of the school's students participated to show their support for Jonathan, SDSF, and Rare Disease Day. He had the chance to talk to larger and smaller groups about what SDS is and how it affects him.
Jonathan is hoping to do this again even bigger and better next year!
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by Christian Del Ré
Our oldest son, Nicholas, read the SDSF children's book,
SDS and Me
to his fourth grade class and also to his brother, Anthony's, first grade class. He explained what makes his brother different from other kids but also taught his peers about what makes his brother just like everyone else. Nicholas answered questions about SDS from his classmates and teachers and then everyone made a card for SDS patients.
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Thank you to Entenmanns Family Bakery of East Meadow, New York for hosting a cupcake fundraiser on Rare Disease Day in honor of Anthony Gregoretti. Anthony's Aunt Michelle Gregoretti, together with bakery owners Debbi and Donna, created and sold delicious cupcakes with the SDS logo. Proceeds went to the Shwachman-Diamond Syndrome Foundation to help support research and a cure. Anthony made a guest appearance, got to hang out behind the counter and so many friends and family went to show their support by purchasing cupcakes. It was such a successful idea that the cupcakes sold out before closing.
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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
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Thank You For Your Donations
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Donations received between February 1, 2019 - April 26, 2019
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Keung King Man James
Lisa Day
David Diaz
Arthur Hudkins
Sylvia Kuleszo & David Misenhimer
Anthony Porrata
Harold Baker
John Daniels Jr.
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Benevity Giving
Network For Good
PayPal Giving Fund
Thrivent Choice - Diane Meyer, Adam Wachter,
Amazon Smile
YourCause - Windsor Yip
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In Honor of Chilton Price
- Alice Brown
In Honor of Anthony Gregoretti
- Donald Murphy
In Honor of Gunner Geary
- Thomas Geary
In Honor of Keller WIlson
- Nathan Edick, Lisa Edick, Blaine Owens, Stacy Spires, Samantha Owens, Vadim Yeliseyenko, Robert Flair,
In Honor of Marissa Avroch
- Rose & Frank Canonico, Catherine DiFalco, Dianne Moschetta,
In Honor of Lois Carson - David Moore
In Honor of Barbara Gribbins - Anne Blabey
In Honor of Emily & Kelsey Jenuwine
- Center Line Lions Club
In Honor of Troy & Kelsey DeBoer
- Cornelius DeBoer
In Memory of Yensu Thao
- Andrew Solimine, Anastasia Ketko
In Honor of Keegan Brice/Memory of Kim Sickbert
- Laura Jacks, Eileen Kreutzburg, Deborah DeWall, Furnas Cty Freight Haulers, Dorothy Dustman, Robert Kurdziel, Dina and Brad, Scott Hawkins, Paul Joiner,
In Honor of Frew Family
- Mike & Renae Davis
In Honor of Chase Gotshall
- Henry Brock
In Memory of Olympia Pasquale
- Laura Rayl, Western Intermediate School,
Rare Disease Day 2019
- Shari St. Hilaire, Amy Walker, Stephanie Gregoretti, Entenmann's Bakery, Jonathan Miller, Christian Del Ré
The Many Supporters Through Facebook Fundraisers
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Thank you for your monthly donations
Deana & Jeffrey Valiante
Andrea Wolf
Calah Beckwith
Indro Hoffmann
Maria Hall
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 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
Christian Del Ré, Communications Chair
Stephanie Gregoretti, Fundraising Chair
Nicole Shen, Membership Chair
Jenni Wachter, Webmaster
Carolina Cordova
Eszter Hars
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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