The latest SDSF news for you

Greetings!

Well, we are reaching the end of the summer of 2020. I can only hope that the remainder of the year is better than it has been so far. To say this year has been challenging is a vast understatement, and now comes the additional challenges of a new school year.

Many of you are, understandably, extremely apprehensive about sending your kids to school during this pandemic. Obviously, I don’t blame you; in the areas where school has already started, the reports have not been encouraging. I’m glad to see that many school districts are providing the option of in person and virtual classes. I can only encourage you to do what is best for your SDS child, as well as the rest of your family.

In other news, after lengthy conversation with members of our Medical Advisory Board, it has been suggested that we state that the incidence of SDS in the population is “less frequent than 1/100,000." We will be changing our materials to indicate this.

Not being able to go to Camp Sunshine has been a huge disappointment to all of us. We do appreciate that Camp is doing everything they can do to help fill the gap. On that subject, I hope you have been able to watch the SDSF Live Camp Sessions. We have had some great speakers to date and look forward to having others in the next few months.

Two SDS patients went into hospitals recently in preparation for transplant. Jessica is at Cincinnati and Peyton is at Texas Children's. Gratefully, it was determined that Jessica will not have to proceed to transplant. Peyton is still scheduled for transplant though. There is a third child and he is scheduled for transplant in September. Please keep all of them in your prayers. We will share their addresses with you so you can send them cards.

Please stay well and SDS Strong!

Joan Mowery

President

Shwachman-Diamond Syndrome Foundation

Be the Match - Swab for a Cure!

Click for Be the Match

Contact Be the Match and help continue to build the registry and help save a life!

Jessica was scheduled for a bone marrow transplant this month but as per Dr. Kas Myers' the transplant is on "pause." We believe in miracles...and we trust God's perfect timing. Every day, advances are made in research. It is of vital importance to donate tissue and blood samples to the registry and any other pertinent studies. We are all in this together. These are "our kids." The outpouring of support and love during this extremely frightening experience will never be forgotten, and will continue to bond our SDS FAMILY together like no other!

Joni Bodron - Jessica's Mom

Meet Our New Board Member

Orva Jurado

Hi! My name is Orva and I am the newest member of the SDSF Board. I am the wife to an amazing man who most people know as Ruben, and mom to our four amazing kids and a boatload of pets. Our girls are Oarionna who is 14, Isabella is 10 and Elevi is 8 and our son, RJ, is 5. Our son is the whole reason why I am involved with the Shwachman-Diamond Syndrome Foundation. He was diagnosed when he was 18 months old and we have been learning ever since, thanks to the board and all the hard work they put into families like mine. When I am not running around with my kids, I am a nurse, student (aiming for my NP), and high school varsity softball coach. I became involved with the Board when asked to help behind the scenes with the SDSF Live show. I coach up the guests on how to work with our platform and move things around behind the scenes and try to troubleshoot any issues that arise. I wanted to join the Board for several reasons, but the biggest was so that I could hopefully help make a difference in someone's life just as the Board has done for me!

SDS Live

Thank you everyone for helping make SDSF Live such a success. Since our episode on the SDS Registry, there has been an increase in the number of Bone Marrow Kits requested and more people have joined the Registry!

Our upcoming scheduled shows include:

October 4th CST - Dr. Grover, Gastroenterologist

We welcome any suggestions for future shows. Please send any ideas to [email protected]

Click for SDS Live Videos

Back to School

How to Communicate About SDS and Our Children's Needs?

by Christian Del Ré

September can be a time of anxiety in any home with the start of a new school-year, especially this year with the all the uncertainty. Kids are nervous, parents are nervous, and between battling to get back into school routines, 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 to keep him or her safe. Yes, the IEP and the 504 state what needs to be done, but communicating one on one with the teacher and administrators is also extremely important.

For the past four 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. The social worker from our hospital also calls in and participates in the meeting. In addition to SDS, Anthony is also hypoglycemic, which brings a whole other list of concerns.

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:

Arrange a meeting with the school principal to inform/remind them about your child’s needs.
Meet or speak with your child’s teachers to discuss your child’s needs and ways to help keep the room safe for a neutropenic child.
Meet or speak with your school’s Social Worker, Guidance Counselor, and/or Psychologist so that they are aware of some of the anxieties that come along with having a chronic illness.
Prepare a letter for the school addressing the concerns you plan to speak about with the school team. Highlight some of the important ways to help your child fit in with other children, such as a buddy box (which we have adopted so Anthony can have some items he is able to share with his classmates so he doesn’t feel so isolated).
Prepare a list of medications that your child is on. Even though they are on file at the school, alerting the teachers to what medications your child takes daily helps make it more digestible for them.

Reach out to other parents and see what they do, and we will be adding these items to the SDSF website shortly that can be downloaded and edited.

Let’s try not to lose the fun and laughter in our lives during the school-year - especially this year! Stay safe everyone.

School Letter

SDSF Info Packet

Medication List Template

62nd ASH Annual Meeting & Exposition

December 5-8, 2020

10th Annual SDS International Congress

Rescheduled to March 22-25, 2021

Help Us Find a Cure

Have you ordered your latest SDS Strong swag? You can find the links to order your new Tumbler and SDS Masks below.

Hurry! These are limited quantity items, and we don't want you to miss out!

We know that this is a challenging time for so many. We are asking that if you set up an online fundraiser for a birthday or special event or if you order from

Amazon Smile, please set Shwachman-Diamond Syndrome Foundation as your charitable organization. Every little bit helps us fund research so help find a cure for SDS!

Click to Order SDS Mask

Click to Order SDS Tumbler

Welcome New SDS Families

Iowa

Vancouver, Canada

Brazil

Wisconsin

Ohio

Kansas

Westport, Indiana

New York

Coatesville, Indiana

Netherlands

Italy

Yorkshire, England

Saginaw, Michigan

Quebec

Poland

Connecticut

Alaska

Albacete, Spain

Norfolk, Connecticut

South Carolina

Ridge, New York

Thank You For Your Donations

Donations received between April 13, 2020 - August 30, 2020

Fidelity Charitable Fund

Greenwich City Schools

Richmond, MO Rotary Club

Javier Maestro

Mona Karimullah

Kathleen Langton

PayPal Giving Fund

Your Cause, Pacific Gas & Electric

United Way Greater Niagara

Dell Giving

Benevity

Kathleen Kinlin

In Honor of Marissa Avroch - Rose & Frank Canonico, Catherine DiFalco,

Margaret Canonico

In Honor of Jess Bodron - Joni & Tim Bodron

In Memory of Ruben Wachter - Carol Boehme, Carla Grebing, C Schilling,

Earl Weber, Nancy Collier, Lillian Schneider, Donald Telle

In Honor of Troy and Kelsey - Cornelius DeBoer

In Memory of Donald Duvall - Brenda Stroer

The Many Supporters Through Facebook Fundraisers

Thank you for your monthly donation

Andrea Wolf

Indro Hoffmann

Maria Hall

Keung King Man James

Lisa Kilcrease

Anthony Porrata

Sylvia Kuleszo & David Misenhimer

Jason Huttinger

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

Donate Today

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.

CLICK FOR ONGOING FUNDRAISERS

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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!