Summer is winding down. The kids are returning to school. It’s always extremely busy, and in many cases, anxiety ridden. Everyone is scrambling to get 504’s and other programs in place and working properly and, as is always the case, the concerns about keeping your child healthy through winter starts again. There is no doubt that this only adds to the stress of having a child with SDS. Please don’t forget while you are staying busy taking care of your family to take a little time to take care of yourself.

The SDSF board has been very busy this summer. We have updated some of our educational materials, including getting some printed in Spanish. We’re excited about some projects which will soon be implemented including SDS LIVE. Nicole Shen and Michelle Grenell have been working nonstop to get this organized. SDS LIVE is a live broadcast which will feature a medical specialist who will answer questions submitted by watchers. We are also making plans to attend the ASH (American Society of Hematology) meeting in early December. Pam and Scott Miller and Mary Balint will be attending and talking to and providing educational information to as many physicians and researchers as they can. We look forward to attending the SDS Registry Family Day in Boston next month and hearing all of the new information they will be sharing. We will also be happy to see and catch up with the families that are attending the meeting.

Please find time to enjoy the fall. It’s one of the prettiest times of the year.

Joan Mowery
Shwachman-Diamond Syndrome Foundation
SDS Family Day
On September 15, 2019, the SDS Registry will be hosting a SDS Family Day at Boston Children's Hospital.
Research Funding to Help Find a Cure for SDS
Dr. Alison Bertuch has been awarded the Hyundai Scholar Hope Grant from  Hyundai Hope On Wheels . She will receive a two-year grant totaling $300,000. We are VERY APPRECIATIVE she will use this funding to work on a cure for SDS! Click the link below to read the executive summary.
Celebrating Our Own
My Thoughts
by Meagan Miller
My name is Meagan Miller. I am fifteen years old and was diagnosed with SDS at ten, but I have grown up with my brothers having this diagnosis my entire life. I’m used to seeing posts from my mother about the biopsies, and all of the comments that come in, saying things like “Prayers!”, “Hope you feel better soon!”, and “Hoping for good results!” I started thinking, as I saw these comments this year, about the people that don’t receive these comments from others, that don’t have the opportunities to get these tests done and aren’t able to monitor like we can. I decided that I didn’t need the prayers as much as those people did, that they needed more support. We are lucky to live close to our hospital where we get our biopsies done - some people aren’t as lucky. They need the support more than I do, same with the people that are more severely affected.
My mother shared my post to the Shwachman-Diamond Syndrome Support Facebook page, and comments came in about me being so wise and so thoughtful. I felt that I was just speaking my mind, saying what I thought. I didn’t do it for the feedback, I just wanted people to see a glimpse of my perspective.
Below is the post that I wrote on Facebook:

I got my fifth Bone Marrow Biopsy today. On my mom's post, everybody is commenting, saying "Prayers! I'm so sorry you have to do/go through this!"

I'm not. I am thankful that I can do this. I am thankful that we are able to go to the hospital, get checked in, and sit for a few hours, waiting for our turn. I am thankful that we have doctors that know what they are doing to help us. I am thankful that we aren't a family that can't afford to have these surgeries done, that our insurance covers it.

I am thankful that we aren't a family that has no way to get these surgeries that monitor us, to make sure that we don't go bad. I am thankful that we CAN get them done, that we will know if we HAVE to get them done.

I am thankful for our doctors that help us. I am thankful for the support system behind our family that emerges three times a year, once for each of us that gets the surgery. I am thankful that so far, we have always had results that don't require further testing.

And so, I ask that in your prayers for a fast recovery, for good results, please add a prayer for those patients that have to get further testing. Those patients that are stuck in the hospital for longer than a few hours, instead staying there for days, hoping that they don't have to do another Biopsy soon. I ask that you include a prayer for those that simple Biopsies couldn't help. The patients that had to get Bone Marrow Transplants, that had to search and hope with everything they had that there was someone out there that was a match for their child that was willing to donate bone marrow, that was willing to give their child a chance to survive.

I ask that you include a prayer for those that didn't make it, that couldn't survive. I ask for a prayer for their families, that they can find peace in the thought that their child will no longer experience the pain of a Biopsy, the fear in the waiting for results, and the sinking dread when they find out that the results are not what they hoped. I ask for a prayer that the families will find comfort that instead of suffering here on Earth, their child is playing, happy and healthy, in Heaven.

I ask for a prayer for the little ones, the babies that couldn't keep fighting, whose tiny bodies were unable to keep going. I ask that they find their comfort and happiness in Heaven as they wait for their families to join them someday.

Instead of praying for me, pray for those that struggle, that see no hope, no light at the end of this long tunnel we call Shwachman-Diamond Syndrome.
Our Family's Journey with IVF
by Nicole Shen
Like many of you, our son Roman endured a medical odyssey of tests trying to figure out what was wrong. We are grateful at six months old, he was genetically confirmed with Shwachman-Diamond Syndrome. . . . Our first thoughts were that we caused this. How could we not know we were carriers of such an awful disease? [The genetics counselor] went on to explain that SDS . . . is inherited in an autosomal recessive manner meaning approximately 25% of our children may have this. Another gut punch! This could happen again. We originally wanted three children. When we were pregnant with Roman, we built a home for these future children. . . . The family we wanted would be very risky. Would we ever have another child? Would we lose the child we had because he didn’t have a match? How can we find this match for him? 

. . . the genetics counselor saw we had used fertility medicine to conceive Roman. . . She said . . . "Let me explain to you how you may be able to have healthy children in your future and perhaps make your son’s bone marrow match.” There was hope! . . . We started the very expensive process of IVF. This process took a few months to get started . . .

We are happy to announce Luciana Violet Shen was born this past January. She is now seven months old. Her cord blood was saved for Roman . . . [and] will most likely save Roman’s life one day. However, she has healed our family in more ways than one.
Names of Doctors Needed!
Do you remember when your child was just diagnosed and you were looking for doctors who knew what SDS was or how to take care of it?
Well there are many new families both here and in other countries in the very same position.
We have wanted for sometime to set up a database of all of the doctors who treat our kids.
So we’re trying again.

Help your fellow parent.
Send the information on all of your child’s physicians to:
It only will take a few minutes and someone will be grateful for your help.

In Memoriam
Although we fight daily to save the lives of SDS patients and search for a cure, we must acknowledge those for whom a cure did not come in time.
Rowan Windham

The following was written by Carrie Windham, Rowan's mom.
Rowan Jameson Windham was born on July 21 st , 2006, in San Antonio, Texas. He was 5 weeks premature and stayed in the NICU for the first three weeks of his life. Once home, Rowan continued to have feeding and growth issues, as well as battling apnea, anemia, and repeat infections. He had a g-tube placed at four and a half months old, and a central line placed at nine months old, so he could receive daily total parenteral nutrition (TPN). After ongoing GI issues and multiple hematological changes, Rowan was clinically diagnosed with Shwachman-Diamond Syndrome before he was a year old. 

Rowan then spent nearly half of his life in the hospital, battling frequent life-threatening septic infections, despite having daily neupogen infusions, and iron and IVIG infusions every two-four weeks. Throughout this all, Rowan was the bravest, strongest, most positive kid you have ever encountered. He was content with the smallest of things in life. He had a severe protein allergy and could not tolerate food, other than potatoes and sugar candy. So, he cried happy tears when he simply got to try watermelon for the first time. It was truly inspiring. 

Rowan was known for saying, “I love my life!” every day of his life, even on the hardest ones. He thanked his nurses daily, even when they had to “poke him.” He would console them saying, “It’s ok, I know you’re just doing your job.” He always had a heart for others, telling nurses to “go help them first” when he would hear a baby cry in the room next door. He raised over $30,000 for various charities before he was even nine years old, by selling his autograph, his artwork, or his ginger lemonade recipe. When asked what it meant to think big, Rowan said, “Even if you’re only helping one person, you’re helping the world…and that IS big!”

Probably his biggest achievement in life however, has been the work he did for Be The Match, and the work they continue to do in his memory. At nine years old, it was time for Rowan to go to transplant. His marrow was failing, and despite everyone’s best efforts, the repeat septic infections continued and worsened. He did not have a match on the national registry though. We started hosting bone marrow drives all over South Texas, and though hundreds upon hundreds of people got swabbed, none were a match for Rowan. Instead of him feeling sorry for himself though, or giving up, he had a dream… he wished he could help find One Million bone marrow matches for others in need.

Rowan and I moved to Seattle in July of 2016, so he could undergo a new protocol for a special haplo transplant, with myself (his mother) as the donor. He never stopped asking people to swab though. He was even known to ask anesthesiologists as he was going under, “are you on the bone marrow registry by chance?” Rowan was determined to find those 1 million matches. 

Rowan’s first transplant unfortunately failed, and his father was used as a second donor. In December of 2016, Rowan succumbed to transplant related complications before he ever got to leave the hospital again. He was only 10 years old. While he was there those final six months of his life, he chose a different friend every day, to fight either in their memory or their honor. Several of those children were fellow SDS patients. In true Rowan style, he was always more concerned with others then himself.

Losing Rowan, was the hardest thing I will surely ever have to go through. But his life had meaning, and a purpose. I believe we will find 1 million matches for others in need, and our family continues to help Be The Match make Rowan’s dream come true. Another famous Rowan quote was, “If you can’t see the good, make the good.” Thank you to all of you who continue to make the good in the world.

In loving Memory of Rowan Jameson Windham 7/21/2006 – 12/15/2016
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. Kids are nervous, parents are nervous, and between battling to get back into school routines, buying all the supplies and clothes, 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. 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 three 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:

  1. Arrange a meeting with the school principal to inform/remind them about your child’s needs.
  2. Meet with your child’s teachers to discuss your child’s needs and ways to help keep the room safe for a neutropenic child.
  3. Meet 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.
  4. 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).
  5. 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.  
Welcome New SDS Families
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
Thank You For Your Donations
Donations received between May 1, 2019 - August 23, 2019
Guddy Punjabi
Juliet Badowski
Harrison Grater
George Taylor
Sarah Zaug
St. Luke Catholic Church, Ankeny, IA
Dell Giving

Richmond Rotary Charitable Foundation
East Greenwich School District
PayPal Giving Fund
REK Architects
United Way Greater Niagara

In Memory of Craig Smith - Linda Martin, John Cobb, Mark Somerton, Furry Community, Jerry Derrick, Sandra Mueller, Brenda Wintermute, John Ritner

In Memory of A. J. Lemler - Rick & Joyce Hazlett, Donald & Lula Underwood, Jeana Stevens

In Memory of Doris Jenuwine - MQR Inc, Greg O'Sickey, Diane Jerichow, Debora Chin, Kathleen Hanselman

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

In Honor of Jess Bodron - Tim Bodron, Precision IBC Inc.

In Honor of Wade Wachter - Terry Duvall

I n Honor of Troy & Kelsey DeBoer - Royal Alliance Associates

In Honor of Scott, Meagan, Jonathan Miller - Carol McCann

The Many Supporters Through Facebook Fundraisers

Thank you for your monthly donations

Deana & Jeffrey Valiante
Andrea Wolf
Calah Beckwith
Indro Hoffmann
Maria Hall
Keung King Man James
Lisa Kilcrease
Anthony Porrata
Sylvia Kuleszo & David Misenhimer

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 

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


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