Greetings!

To say that this year is not going as planned is a vast understatement. The only thing I have seen that appears normal is the weather. And in Missouri there is an old saying, ”if you don’t like the weather stick around 5 minutes, it will change”. It looks like we are all living in a Missouri weather situation. Uncertainty seem to be our new normal.

My main concern right now is that we all stay well. This may be the only time in recorded history that the SDS/bone marrow failure community may have an advantage over the rest of the population. You are all experts about germ control and social distancing. I do see some positives around us. The air is cleaner, the road congestion is gone, and I think many of us are cooking more and therefore eating healthier.

Our Board is using this time to provide as many SDSF Live presentations as possible, given the doctors increased schedules. This week and next we will be focusing on the psychological issues we are all facing. I hope you all find the time to watch them. As guests we have Mahoud Huda, (Mac is his nickname) a psychotherapist and SDS dad, and the newest member of our Medical Advisory Board, the always helpful Nancy Cincotta. Thanks to Nicole and Michelle for their hard work on all the SDSF Live shows.

We are all very sad that it was necessary to cancel our week at Camp Sunshine. We are looking forward to seeing all of you there next year. We are arranging with the faculty, who we planned to have at Camp, to provide their presentations to us virtually. This will be done as their schedules permit. We will keep you posted as they are scheduled.

PLEASE stay well and keep the kids away from the hospital.

Joan Mowery
President
Shwachman-Diamond Syndrome Foundation
Camp Sunshine SDS Week Cancelled
It is with deep regret that we inform you that, out of an abundance of caution, we have cancelled our week at Camp Sunshine in July. We feel this is necessary in order to protect our SDS patients during this health crisis. We will be rescheduling for a date in 2021.

Click below to see the letter from Camp Sunshine and look out for the dates and application to be posted for next summer in November 2020.

Please Stay Healthy!
SDS Virtual Camp Being Planned
We are working out the details for a Virtual Camp this summer so that we can bring you the latest information from the SDS specialists that were scheduled to present this summer Stay Tuned for more information in the near future. Check out our website , Like us on Facebook , and Follow us on Instagram for the latest information.
SDS Live
by Michelle Grenell
When Nicole and I started the SDSF Live broadcast we knew we had big dreams. We knew it meant we would put in more work, but it was important to us. We wanted people to feel connected. Little did we know a pandemic would hit the nation and we would need each other more than ever. This past month Nicole and I have been able to use the platform we created to encourage our SDS families in a time of crisis. We have had 4 different medical professionals discuss the current COVID-19 pandemic in a reasonable and personal way. Nothing with SDS is “typical,” and it takes many medical professionals to even understand the complications that could arise.

Nicole said this, “ ‘This show has been such a learning process for me and Michelle. Each week, we learn and try to improve. When we start the show and see how many people we can teach around the world, it’s so exciting! The feedback we are getting is incredible. The community would otherwise not have access to these subject matter experts. This platform makes it possible in a comfortable way each week.’”

We knew we wanted a platform that connected our SDS families and felt like we were sitting around a porch, drinking coffee, and discussing everyday things. I am so glad we had that vision, because not only did it bring us calm during the COVID-19 chaos but it is also going to be used to replicate “virtual camp sessions” this summer. With the spread of this virus we unfortunately had to postpone our week at Camp Sunshine. To say this was devastating would be an understatement. Families like ours very often feel mis-understood. Camp Sunshine provides us all a week to feel heard, loved, and cared for in a way no other family understands.

Some of the feedback that we’ve gotten after shows has validated why we’ve needed a show like this. Thank you to everyone who has believed in us, shared our posts, told a friend, or encouraged us. A very special thanks to Joan Mowery for giving these two moms in yoga pants a chance, and rolling with all of our chaos.

Our upcoming scheduled shows include:
  • April 19th - Mahmoud “Mac” Hassan, a SDS Dad and Psychotherapist
  • April 26th - Nancy Cincotta


We welcome any suggestions for future shows. Please send any ideas to SDSFLive@shwachman-diamond.org
Celebrating Our Own
Meet Gracie Van Brunt
Hi my name is Gracie Van Brunt, I am 25 years old and I was diagnosed with Shwachman-Diamond Syndrome when I was 2 years old. In June 2019, I received my bone-marrow transplant with my brother being my donor. Things have been going extremely well with my transplant and I am on the road to making a full recovery! I have passed the point to which I could have gotten Acute Graft vs. Host Disease and I have no symptoms of Chronic Graft vs. Host Disease! 

Since my transplant, I have been in quarantined recovery and will finish my recovery in June of this year! I wanted to make the most of my new-found free time in quarantine, so I have mainly been focusing on growing my music career! I am a singer/songwriter and in September 2019, I released a collaboration track with two DJs named Kiba and Mortals called “Siren” via Simplify Records. It was my first time releasing with a label and just last month, our track hit 100,000 plays on Spotify! In February, I released another track with a DJ named She Was Silver called “Side Effects” again via Simplify Records and that track has already reached 50,000 plays on Spotify!

Because of these releases, I have gotten more paid songwriting and vocal work than I have ever gotten in my life! I am very grateful because it is all remote work and allows me to make my own money during quarantine.

Two years ago, my boyfriend, Louis, our friend, Liza, and I, started a music sync library called Wounded Zebra Music House. This means we are creating music that can be used in TV and Movies. In December 2019, we created connections to one of the biggest Sync Libraries in the world called APM and have been submitting to them! 

I am very excited to be cleared of my transplant recovery and I hope that my story can give hope to other families and inspire people now in quarantine to make the most of their time =)
Rare Disese Day
by Michelle Grenell
This year for Rare Disease day 2020, the SDSF wanted to use the platform to not only advocate for Shwachman-Diamond Syndrome but also spread kindness. We launched a campaign centered around paying it forward with Rare Act of Kindness cards. Families received a set of cards and instructions to do something kind for another person. When they were asked about why, they could advocate for SDS with an informational card.

Our families always advocate so well for Rare Disease Day. This year was no exception. Thank you to all the families who participated in using the Facebook fundraising tool as well as holding personal fundraisers. We saw many unique fundraisers including baked goods, casual dress, auctions, book sales, and t-shirt designs! Thank you all for your continued efforts in finding a cure!

Felima Hohn, a mother of 3 SDS patients wrote this about Rare Disease Day and what it meant to her:

“ Shwachman- Diamond Syndrome is rare. I used to think SDS stole our chance of being "normal" and forced us to be "rare." I have come to understand that it didn't steal "normal" from us; it simply altered our "normal" to include the "rare."

"Normal" means gaining a chosen family who gets it, whose "normal" is eerily similar to ours, and who loves you unconditionally. Really. "Normal" means a doctor who shares his cell phone number and who calls to check in before HE goes on vacation. "Normal" is savoring every smile, every giggle, every tear, and every hug.

"Normal" means breakdowns and meltdowns and what-ifs and why me-s. "Normal" makes me THAT mom of THAT kid. "Normal" means educating the ER doctor when my child has a fever. "Normal" is challenging every assumption, every procedure, every result, and every treatment.

We advocate. We teach. We fight. And sometimes we lose. We hurt. We do it again tomorrow.
Because we are strong.
Because we are rare.
Because we are normal.”
Our Stories of Rare Disease Day
by Jenni Wachter
To celebrate Rare Disease Day (February 29, 2020) as well as raise awareness for SDS, one family took to the classroom to do a lesson! Wade (9) and his mom, Jenni, presented to about 40 third graders and their teachers about Rare Disease Day and what it’s like to live with SDS. They showed a video about Rare Disease Day and SDS and then presented a PowerPoint. Topics included rare diseases, general features of SDS, types of medication Wade takes, and how SDS makes Wade feel. There was even an opportunity to administer Wade’s shots (Neupogen & Norditropin) in front of the class. Wade’s peers were either very intrigued or very grossed out with seeing Wade get shots in his arm! Wade was all smiles to prove to everyone that “they don’t hurt!” After the presentation and the shots, the students saw how brave Wade is to live with SDS every day. They asked many, many, questions and were encouraged to tell their parents about the special presentation.
by Stephanie Gregoretti
Thank you to Entenmanns Family Bakery of East Meadow, New York for hosting the Second Annual Cupcake for a Cure 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 again this year before closing. We doubled last year's donation and hope to continue down this path next year!
by Christian Del Ré
On Rare Disease Day this year, our oldest son, Nicholas, read the SDSF children's book,  SDS and Me  to his fifth grade class and also was a mystery reader in his brother, Anthony's, second 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 and Anthony's classmates.

In addition, the entire school celebrated Rare Disease Day. Each student colored a ribbon and wrote encouraging messages in honor or Rare Disease Day and they were put up all around the main lobby of the building. Students in the school were also asked to wear denim jeans to represent "genes."

On Rare Disease Day, our family was invited by NYPD Hope to represent Shwachman-Diamond Syndrome at the NYPD's Rare Disease Day Event at Police Headquarters. One of the police cars was outfitted in the colors for Rare Disease Day and those with Rare Diseases wrote their names on ribbons and stuck them to the car.
10th Annual SDS International Congress
Rescheduled to March 22-25, 2021
Welcome New SDS Families
San Jose, CA
Washington, DC
Novi, MI
Vancleave, MS
Lubbock, TX
United Kingdom
Florida
Argentina
Lansing, MI
Spain
North Carolina
South Carolina
Vancouver, WA
Preston, Lancashire
Virginia
Mexico
France
Thank You For Your Donations
Donations received between January 1, 2020 - April 12, 2020
Richard Mason
Garrett McDonough
Mary Crowley
James Parsons
Robert Wilgus
Karen Capozzi
Morris Salter
John Reuter
John Daniels
PayPal Giving Fund
Your Cause, Pacific Gas & Electric
United Way Greater Niagara
Dell Giving
Benevity
Cumberland Municipal Employee Credit Union
Centerline Lions Club

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

In Honor of Jess Bodron - Joni & Tim Bodron, Lisa Kilcrease

In Honor of Cam Kilcrease - Joni & Tim Bodron, Lisa Kilcrease

In Honor of Maggie Collins - Bridget Collins, Sandra Schnell,
Jeffrey Clark School

In Honor of Toby Padilla - Robert Gonzenbach, Anne Chiffoleau, Jacob Silva, Andrew Chavas, Vivian Garcia

In Honor of Anthony Del Re - Stacy Ulahel

In Memory of Michael Billings - Claudine Hogan, Pamela Hartshorn,
William Wojcik

In Honor of Wades World - Semo Imprints, Shannon Anderson

In Honor of Reece Pins - St. Luke Catholic School

In Honor of Jordan Larkin - Darren Wilhite

In Honor of Yahan - Ciera Drury

In Honor of Anthony Gregoretti/Rare Disease Day - Entenmann's Bakery

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

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.
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
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

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