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The end of every year brings a wide range of emotions. Fond memories of stories from SDS families about the achievements and milestones their children accomplished fills my heart with joy. Sadness for the patients that have lost their battle to SDS and hope for the future. I feel there has been great progress in the research of SDS and am excited to see the number of presentations at ASH increasing over the years. More families have been featured in the news this year than in the past, spreading awareness through their stories. I wonder how many times the reporters had to practice saying Shwachman?
Next year, 2018, will be a busy year for SDSF and SDS families. In April, the International Congress on SDS takes place. Research from around the world will be presented on SDS and its many aspects. I hope to see some families and young researchers in Houston, TX. Connecting families and researchers gives SDS a face, feelings, and a voice to a number, symptoms, and test results. Another great learning experience for families is Camp Sunshine. The dates for the SDS session are out! Many call Camp their home away from home, or their magical vacation getaway. My husband calls it Super Magic Funtime. All patients diagnosed with SDS, including adult patients and post BMT patients, are welcome to attend. What will your family call Camp?
Donations are crucial for SDSF to sponsor the week at Camp Sunshine and the International Congress. I am very grateful to all donors and those raising funds. Please continue to support SDSF.
Wishing you all a happy and safe holiday season!
Sincerely,
Christine James
President
Shwachman-Diamond Syndrome Foundation
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CAMP SUNSHINE - SDS WEEK ANNOUNCED
SDS Week at Camp Sunshine is July 15th to July 20th. Click below to visit Camp Sunshine's Website to download and complete your Family Application!!! Hope to see you at Camp!!
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ASH
(American Society of Hematology)
December 8-12, 2017
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The American Society of Hematology annual conference just concluded. It was estimated that over 25,000 hematologists and researchers attended from all over the world. . . .
India, China, Lithuania, Russia, the Netherlands, Saudi Arabia, and Pakistan among others. . . . t
here were more presentations on SDS than there have ever been in the past. It is our great wish that this trend continues and with your help, we will continue to raise awareness towards SDS.
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Spotlight on Booker's Art
by Alexis Dahlman
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Booker Dahlman was a crazy, hyper, out of control child (at least after he started taking his Creon), but as his parents, Tom and I, noticed that the one thing that would calm him down and give him focus was art. Before he was a year old, Booker could spend hours coloring. He still spends much of his day drawing. Booker said that when he is drawing, he thinks of depth, colors, and in his mind he tries to picture what he is drawing. Booker said that drawing makes him feel calm. I started an Instagram page when Booker was two so that I could save his art. The page has gradually drawn a crowd of followers, and his art has been noticed by local Oklahoma artists, some of whom are nationally known; Booker is now in weekly art classes with a local professional artist who believes Booker is a, "child prodigy." As Booker's parents, we don't mind bragging about our son and we are happy that he has some things going for him, despite his health challenges with SDS.
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MEDICAL CONFERENCE UPDATES
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9th Annual Congress on Shwachman-Diamond Syndrome
April 8-11, 2018
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SDSF is extremely excited that the upcoming
International Congress on SDS is being held in the United
States.
This event is attended by physicians and researchers from around the world. It provides the opportunity for these attendees to share information and research about the causes and possible treatments for SDS. We are proud to sponsor and financially support this important meeting.
While adult patients and parents are welcome to attend, it needs to be stressed that this is not like our family conferences, where presenters use terms lay people can understand. This Congress is primarily for medical professionals and you will be completely lost if you do not have a good understanding of medical terminology. Also, although the organizers are making great efforts to keep costs down, there is a registration fee to attend.
Registration for the Congress is now open. Click the link to visit the SDS Congress Houston website.
SDS Congress Houston
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Bringing Attention to SDS
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Over the past few months, our families have been working hard to bring more local and national attention to SDS, and how badly we are all working to find a cure. When we work together as a family, there is no limit to how much we can achieve! Below are some of the stories that have grabbed headlines.
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SUPERNATHAN
by Michelle Grenell
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Back in August when it was time to celebrate Nathan's birthday . . . the fire department reached out to have us out, we graciously accepted . . . . Nathan was most excited to ride in the front of the fire truck. His new BFF, Fireman Brad, proudly put on his Be the Match bracelet and swabbed for the news cameras. Since then, over 50 people have reached out to us personally or through the website to swab in honor of all of the Shwachman-Diamond fighters who may need a transplant some day!
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HEALING HENLEY
by Jess Johnson
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After Henley was diagnosed, we were connected with Be the Match. I remember them calling and asking if we would be open to sharing Henley's story with the media. . . . So from that point forward we decided as a family that we would say yes anytime we were asked to share Henley story. . . . as a result, we were able to connect with a 58-year-old male who was diagnosed . . . as SDS . . . in Rochester Minnesota . . . he did not know about the foundation or about the [SDS] Registry.
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GARDEN OF DREAMS
by Stephanie Gregoretti
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Thanks to the Garden of Dreams Foundation, Anthony Gregoretti had his dreams come true! . . . Anthony who goes through so much himself wanted to cheer up one of his great friends who was going through some serious medical complications. . . . When the Garden of Dreams and the New York Rangers heard about the boys, they wanted to do everything they could to help, and boy did they! Both of our families were invited to the season home opener . . . Then, in November . . . [we] were invited back for Hockey Fights Cancer Night where the boys were asked to do the ceremonial puck drop!
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CLICK FOR ANTHONY'S VIDEO |
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ANTHONY'S JOURNEY
by Gina & Christian Del Re
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Anthony and his big brother, Nicholas, were officially drafted as part of the College of Staten Island's Men's Soccer
Team . . . Anthony was chosen by . . . Team Impact. Children with life-threatening illnesses and fighting big battles are inspiring the lives of young men who want to be a part of his life and have an "impact" to help bring awareness to his rare disease. . .
The coach has already scheduled an SDS Awareness Night for next season where the college will help in raising awareness and funds for SDSF!!
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WADE'S WORLD
by Jenni Wachter
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"I'm Not a Hero...I'm Just a Mom." This was my response when I received a phone call from the local news station . . . explaining that I had been nominated as an "Everyday Hero" for my efforts in raising awareness for the bone marrow registry and [SDS]. . . .
All SDS patients need a cure and some of them need bone marrow donors to survive-so I'll continue to fundraise, design t-shirts to raise awareness, and host and volunteer at bone marrow drives!
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TEAM IMPACT
by Mary Balint
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We absolutely love the positive attitude and the loving care that the Stony Brook Women's Soccer Team have given us. The entire team goes well above and beyond for Rylie.
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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.
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The following was written by Honey Denson, Luke's mom, and read by her brother, Jon, at Luke's memorial service this past October.
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In a time like this, it is all too easy to sit back and wonder what could have been and what if. To concentrate on the future that never will be instead of looking at the wonderful life that was. The first movie Luke saw in a movie theater was Up. In it, the main character, Mr. Fredrickson, is determined to get his house to a waterfall his wife, Ellie, always wanted to see but, for several reasons, was not able to before her death. He somehow feels like her life was left unfulfilled because she never got to experience it. There is a moment when, looking through her photo album, he realizes that she had lived a wonderful life. There were pictures of the everyday, and that is what really mattered. Now Luke did get to experience some wonderful, extraordinary things. He dipped his toes in the ocean, was picked to run the bases at a Nashville Sounds game, rode Space Mountain, canoed on a lake in Maine, won a Pinewood Derby, saw the beauty of the North Carolina Mountains, ate chili in Cincinnati, explored space in Space Camp with his dad, and was a proud member of the MTSU baseball team. However, it was the every day things that made life wonderful like getting ice cream for lunch on half days of school, hiking to see the beauty of Burgess Falls, having pizza and movie night on Fridays with his family, snuggling in bed with his parents on a lazy Saturday morning, summer swimming, camping with family and friends, Starbuck's Chi Tea Latte dates with his mom, getting popcorn and a slush at Target, bedtime stories, being spoiled rotten during sleepovers at grandparents.....The list could stretch for miles. It might not seem like much, but life and love are in the little things.
Another thing about Luke that must be noted is his kindness. He hated studying the Civil War because he just could not wrap his head around the idea that people could and would want to hurt others. He would clam up whenever a reading passage from his homework would be about slavery or people intentionally causing harm and would sometimes refuse to do the assignment because he said it made him too uncomfortable. He really loved people. Even in the hospital when he was not feeling good, he liked to leave his door open and wave to whoever was in the halls. When he did feel good, he like to walk around the unit and wave to the other kids. He was always willing to put on a smile and try to make someone else's day a little bit better.
If you want to honor him and let his memory live on, be kind to others. It is a small simple thing, but a smile, a wave, or a kind word can go a long way. He hated all of the negativity in the world, so go out and do something positive. Enjoy the simple things in life. Go get that milkshake (He liked chocolate most), dance when your favorite song comes on (he did that once in the middle of a restaurant), sing at the top of your lungs, get the whipped cream on your coffee, or take a walk and look for crickets, lizards, and lightning bugs. That is how you can honor him and cherish his memory.
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SDSF THANKS EVERYONE WHO DONATED OR CREATED A FUNDRAISING PAGE FOR GIVING TUESDAY.
THE AMOUNT RAISED, WHILE NOT YET FINALIZED, HAS EXCEEDED OUR EXPECTATIONS!
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Stay up to date with SDSF! Follow Us on Instagram at
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Calexico, CA
Szczecin, Poland
Surany, Slovakia
Mombasa, Kenya
Eninal, TX
Denver, CO
Ankeny, IA
Manol, France
Oxford, MS
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Thank You For Your Donations
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Donations received between August 23 - December 15, 2017
Michael Truesdale
Humble Jumbo
Heather Holladay
Amazon Smiles
Morgan Stanley Cybergrants Inc.
PayPal Giving Fund
Network For Good
Thrivent Choice
Truist
DELL - Your Cause LLC
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In Honor of Gracie VanBrunt
- Malcolm Walsh
In Honor of Travinor Jean Erni
- Stephen & Teressa Cottos, William Hamaker
In Honor of Jessica Bodron
- Tim & Joni Bodron, Precision IBC, Inc.
In Honor of Tobias Padilla
- Carl Topley
In Honor of Roman Shen
- Erin Kassab, Traci Caracozza
In Honor of Michael Billings
- David Misenhimer
In Honor of Joe & Jonathan Wall
- Joyce Wall
In Honor of Hanley Johnson
- Dennis Rustan
In Honor of Chilton Price
- Alice Brown
In Honor of Rowan Windham
- Yahan Xie
In Honor of Lincoln Lilywhite
- Amy Breaux
In Honor of Addie Jacobs
- Dennis & Sara Berkhimer
In Honor of Virginia Nagey
- Marcia Riley
In Honor of Michael Rieger
- Brian Tobey
In Honor of Marissa Avroch - Rose & Frank Canonico, Catherine DiFalco, Jennifer Avroch
In Honor of Ronin Porrata - Anthony Porrata, Bryce & Katherine MacDonald
In Honor of Anthony Del Re
- Karen Fanizza, Tabitha &
Tommy Romano, Dina Zitkus Mora & Family
In Honor of Troy & Kelsey DeBoer
- Lois DeBoer
In Honor of Emily & Kelsey Jenuwine
- Diana & David Murphy
In Honor of Matthew Valiante (In Memory of Annette King) - Gary & Debbie Flynn
In Honor of Wade Wachter -
Olympic Steak House, Wade's World Fundraiser, St. Paul Lutheran School
In Honor of Danny Rohe - Brenda Hall, Holly Cetrolo
In Memory of Luke Denson
- Jennifer Avroch, Nicole Ceparano, Patty & Daniel Stranch, J. Gillette, Corbin Matlock, David Donoho, Melinda Hamby, William Pettus, Matthew Johnson, Bonnie Johnson, Daniel Strawser, Jr., Benjamin Shepard, Jodi Trull, Andrew Brophy, Charles Churchwell, Rachel Day, Thomas Tropp, Kay Kelley, Crystal Swafford, Rebecca Thomas, Mortenson Construction Team, Charlottel Lynn, Jane & Jerry Campbell, Larry & Linda Homesley, James & Susan Garretson, Stephen & Polly Mayeur, William & Shannon Amett, Mr. & Mrs. Alvin Moore, Ralph & Donna Barr, Amanda Turman, Richard Donnell, Karen Wrather,
In Memory of Heather Pendergast - Thomas & Penelope Pendergast
In Memory of Sarah Kilby - Springfield College
In Memory of Mildred Beeler "Nana" - Sharyn & Haven Sharaf, George & Maureen King, Timothy & Deborah Regan, Thomas & Kathleen Ferlito, Anne & John Wall, Paul & Joanne Travers, Dolleen DeBiase, Nancy Zagdan-Gross, Kathleen & Joseph Thibodeau, Eileen & Roberta Flynn,
Martha & William Kuklinski, Donna Pino
In Memory of Kelsey Jenuwine - Nancy Vanthomme
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Thank you for your monthly donations
Deana & Jeffrey Valiante
Maria Hall
Andrea Wolf
Calah Beckwith
In Honor of Wade Wachter - Jennifer Wachter
In Honor of Marissa Avroch - Dianne Moschetta
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
Christine James, President
Joan Mowery, Vice-President
Pamela Miller, Secretary
Bryan Sample, Treasurer
Ed Bickel, Creative Media Chair
Christian Del Ré, Communications Chair
Stephanie Gregoretti, Fundraising
Jenni Wachter, Webmaster
Nicole Shen, Membership
Other Amazing Leaders
Joyce Wall - Anna Angel Basket Coordinator
Maura Donahue - Advisor to the Board
Ed Turkaly - Advisor to the Board
Kim McDowell - Administrative Assistant and Bookkeeper
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:
christiandelre@shwachman-diamond.org.
We would love to hear from you and share your stories!
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