Greetings!
Well, it looks like Spring is finally here. I’m delighted and I’m sure you are too.
I know everyone is missing Camp Sunshine. Unfortunately, we have not had any updates as to when they feel it will be safe to have camp sessions again. We are, however, continuing our SDS Live presentations and have some interesting shows planned for the near future, beginning with a show to discuss the results of the survey we posted. Nancy Cincotta, who helped us develop the survey, will be on this show, as well as the newest member of the Board of Directors, Honey Denson. Honey has taken on the task and title of Patient/Family Education Chair. Honey will discuss her plan to help families with school, psychological, and behavior issues. Honey will be assisted by several SDS mothers/educators who have agreed to assist with this project. We are thrilled to have Honey join us. She is a great asset. You can read her bio in this newsletter.
This newsletter also contains a copy of the Diabetes Study poster/announcement. SDS patients are at higher risk of developing diabetes than the general population, because of the involvement of the pancreas. This study is extremely important, as it is the first study aimed at identifying, and hopefully stopping the progression of diabetes in SDS patients. It is well established that diabetes has its own serious side affects which complicate patient care when the patient also has SDS. Diabetes causes many problems. Diabetic patients can have difficulty fighting infection, it can also cause problems with the kidneys and neuropathy. When a patient is already dealing with SDS, they do not need any additional health issues making the situation worse. The study is very easy to participate in. We’ve had some patients participate and some results have been obtained. There are openings for more participants. We urge all patients to enroll. Simply email info@shwachman-diamond.org and we will forward your info to the research team.
We have had a lot of conversations about the safety of the COVID vaccine for SDS patients. We encourage everyone to talk to your child’s SDS specialist about this.
We all look forward to the summer and being able to get outside and enjoy a little more freedom, following a long, dreary winter.
Stay SDS Strong!
Joan Mowery
President
Shwachman-Diamond Syndrome Foundation
|
|
Meet Our New Board Member |
|
Honey Denson is a mom to Luke, Joshua, and Lucy. Luke had SDS and passed away in 2017, from Leukemia. She is an educator and has taught middle school, high school, and for Tennessee's Early Intervention System. She currently teaches English at Middle Tennessee State University.
Honey is working on a parent empowerment manual to aid parents as they navigate through the educational system and prepare their children to be proactive adult SDS patients.
|
|
Order Your SDS HOPE IS IN OUR GENES T-Shirt
|
|
February 28th, 2021, was Rare Disease Day! 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. For those who wished to participate, she has redesigned the original t-shirt she made in 2019, to include on the back the newest names of our SDS warriors as well as those who have lost their battle with SDS, but will forever be remembered.
Orders can still be placed by visiting the link below.
|
|
Thank you everyone for helping make SDSF Live such a success.
Our upcoming scheduled shows include:
April 18, 2021 at 6:30 pm CST - We will be presenting the results of our Empowering Patients SDSF survey. Guests include Nancy Cincotta and Honey Denson, Board Member.
|
|
Join Roman and our diabetic research study to determine if you might develop diabetes. See the information below.
Click the button below to email us and inquire about the study.
|
|
|
10th Annual SDS International Congress
Rescheduled
|
|
The SDS Congress website states that they will update everyone in early 2021, about a possible virtual and in-person sessions to hopefully take place this year. Check their website to learn more.
|
|
The long awaited SDS Awareness Ribbons are finally ready! These ribbons are custom made double layer ribbons to bring awareness to SDS. Each ribbon will arrive assembled with a gold pin attaching them.
Ribbons are $5 per ribbon, or 3 ribbons for $12. Domestic shipping is included.
There is only a limited quantity of these - act fast!
These are great to spread awareness! Fill out the form below to place your order.
|
|
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!
|
|
Barrack Heights, NSW Australia
Grosse Pointe, Michigan
Seattle, Washington
Morgantown, West Virginia
Encinal, Texas
Bella Vista, Argentina
United Kingdom
Dublin, Ireland
Munich, Germany
New York, New York
Leicester, UK
Pune, Maharashtra, India
Budapest, Hungary
Crowland, England
Saratoga Springs, New York
Switzerland
Columbia, Maryland
Boylefurt, Wyoming
West Naomiemouth, Utah
Portland, Maine
Zachariahshire, Michigan
Scotts Bluff, Nebraska
Apex, North Carolina
Gering, Nebraska
New Jamal View, Tennessee
Rancho Santa Margarita, California
Lemkeburgh, Colorado
East Cristianbury, Connecticut
O'Konside, Minnesota
Port Deronstad, Florida
Eugene, Oregon
Shenandoah, Pennsylvania
Little Rock, Arkansas
Guatemala
Pensacola, Florida
|
|
Thank You For Your Donations |
|
Donations received between December 11, 2020 - March 30, 2021 |
|
Jenna Rowland
Sebastian de la Fuente
Waynele Yu
Seth Corey
Stephanie Stephenson
Rowena Hartman
Mario Acosta
Whitney Garrett
Robert Latta
Angela Griess
Kelli Conrad
|
|
PayPal Giving Fund
Your Cause
United Way Greater Niagara
Dell Giving
Benevity
United Way of Rhode Island
Charities Aid Foundation of America
|
|
In Honor of Marissa Avroch - Rose & Frank Canonico, Catherine DiFalco,
In Honor of Michelle Puligares - Lorene Pugliares
In Honor of Logan Stone - Susan Utz
In Honor of Troy and Kelsey - Cornelious DeBoer
In Memory of Sarah Kilby - Jill Flynn, Donna Kilby
In Honor of Jordyn Jones - Mrinmoyee Das
In Honor of Anthony Del Re - Peter Dachille Jr.
In Honor of Camden Kilcrease - Stephen Kilcrease
In Honor of Elizabeth Claire Cole - Samuel Cole, Gordon Cole, Susan Davis
In Honor of Jennifer Avroch - Stephen Avroch
In Memory of Dora Dorsey - William Rohe, Juliann Walsch, Mary Grosser
In Honor of Matthew Valiante - Deanna Valiante
In Honor of Michael Bowron - Katherine Bowron, Peggy Bowron
Brock-Bolen Wedding (In Honor of Chase) - Diana Burke, Kathy Will, Ashley Kogan, Jennifer Butler, Cindi Helverson, Anne Solmo, Melinda Sutton, Angela Hernandez, Jennifer Moncrief, Anthony Solmo, Andrea Corona, Chris kiefer,
In Honor of Team Roman - Shanna Priddy
In Memory of Bob Fugiel - Katherine Seifert
In Honor of Annabelle G - Allackie Gathogo
In Honor of Keller Wilson - Vadim Yeliseyenko, John Daniels, Katrina Heston, Jackson Township Fire Department, Toms Family, Sunbelt Rentals Mound Street, Zachary Edick, Stacey Spires
The Many Supporters Through Facebook Fundraisers
|
|
Thank you for your monthly donation
Indro Hoffmann
Maria Hall
Keung King Man James
Anthony Porrata
Jason Huttinger
In Memory of Michele Mowery - Joan & Greg Mowery
In Honor of Camden Kilcrease - Lisa Kilcrease
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
|
|
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. |
|
Shop The SDSF Online Store |
|
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! |
|
Shwachman-Diamond Syndrome Foundation |
|
FOUNDER: Joan Mowery 1994
BOARD OF DIRECTORS
Joan Mowery, President
Mary Balint, Secretary
Bryan Sample, Treasurer
Christian Del Ré, Communications Chair
Honey Denson, Patient/Family Education Chair
Stephanie Gregoretti, Fundraising Chair
Orva Jurado, Tech Expert
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
|
|
|
|
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!
|
|
|
|
|
Shwachman Diamond Syndrome Foundation
888-825-7373
|
|
|
|
|
|
|
|
