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Guten Tag! Hello! This summer my family and I are traveling to Germany to spend some time with my son's marrow donor. We are also invited as honored guests to the 10th anniversary party of the company she works for, Cleverbridge. This company supported her through the whole process and even flew her to see us when she was in the USA for business. Her story was followed through the company's newsletter and is being featured with DKMS, Delete Blood Cancer, along with a marrow drive at the party. There are over 6 million people from Germany in the marrow registry. We are very fortunate there was a match for Bodie. Bodie's transplant spread awareness of SDS throughout the Cleverbridge family, and their offices in Germany, Chicago, San Francisco, and Tokyo. Spreading awareness of SDS and the marrow registry needs to continue to spark interest in researchers and to help patients who are waiting for a match.
One of SDSF's missions is to spread awareness, along with funding research. I am excited to tell you we are in the process of vetting several applications for a research grant. They are very relevant with great scientific merit in the treatment of SDS. We need this research and research takes money. There were several fundraisers for SDSF this year and I hope you are planning yours. I am looking forward to hearing from you about your ideas.
Summer is coming to an end and the beginning of the school year is approaching. The task of getting children back into a routine and scheduling immunizations and flu shots are on the 'to do' list. Remember to check with your school if there are any shot requirements for the grade he/she is entering. Take a moment and have a meeting with the school nurse and your child's teachers to go over any new treatment, new diagnosis, or work on a 504 or IEP. It's also a good idea to go over the basics too, even if nothing is new.
For those who are planners, next summer is a Camp Sunshine year. I do not have any information at this time. I will keep you updated with any information for Camp.
Hope you all have a wonderful end to summer and a smooth transition to the new school year.
Christine James
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SDSF New Website Launched
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Did you notice our new website at www.shwachman-diamond.org? After months of hard work on re-designing our website, it was finally launched on April 24. The new website offers valuable information and resources for SDS families including:
- symptom and diagnosis information
- a glossary of medical terms
- links to medical research articles and resources
- patient pictures
- information about the SDS Registry, Camp Sunshine, and more.
You might also find the following website tools helpful:
- ongoing fundraising activities
- tips to help your family host a fundraiser
- an option for donating online
- a page that you can set up a personalized fundraiser page to collect online donations from friends and family
We also have a page designed to give a shout-out to SDS families with news stories. We hope that you find the new website as resourceful as we do. Please remember to share our website URL with friends and family to spread the word about Shwachman-Diamond Syndrome. If you have any questions about the website or wish to add a patient picture to our site, please email SDSF's webmaster, Jenni Wachter, at [email protected].
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Introducing a New Member to the
Medical & Scientific Advisory Board
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Sioban Keel, MD
Assistant Professor of Medicine
Division of Hematology
University of Washington
Seattle, WA 98112
Sioban Keel, MD, is an assistant professor of medicine in the Division of Hematology at the University of Washington and sees patients in clinic at the Seattle Cancer Care Alliance. She is one of only a few individuals nationally who have focused on the evaluation and care of adults with congenital marrow failure syndromes. Her research efforts center on defining the clinical spectrum of these disorders and their genetic underpinnings. She collaborates closely with Dr. Akiko Shimamura at Seattle Childrens' Hospital on diagnostic approaches, patient care, transition of care, and research advances in inherited marrow failure.
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Black and Yellow
by Melissa Herrera
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Melissa Herrera's poem, "Black and Yellow," was selected to be included in this year's WITS letterpress project. Each year, a small selection of some of the most vivid poems from the year written by students at Seattle Children's Hospital are chosen to be made into broadside posters. Each student poem is individually designed and handprinted as a poster by a master letterpress artist in Seattle. Melissa passed away in 2014, after an attempted bone marrow transplant.
Black and Yellow
by Melissa Herrera (Age 15)
Black for all the rough times that happen here.
Yellow for all the happy times that happen here.
For black, procedures and fevers.
And sometimes it gets boring;
I'm just lying in my bed with nothing to do.
When I have a headache
I don't want to do anything.
I have a high pain tolerance;
when I have pain, I usually tell them later.
I think the 2nd week I was here
we had back to back appointments and dental issues.
(When I woke up my mouth was hurting a lot
and I could only eat soft foods.)
For yellow, it's good to wake up every morning seeing the sun
because every time I wake up I walk to my window
just to see the view.
I like to keep the negativity away from me.
I never let it through the door.
I try to keep my room as fun as possible,
with crafts and animals.
I like to decorate my room
and I like it when my friends come visit me.
When I don't have a headache I'm usually active.
I walk through the unit and make my laps.
I try to have fun with my mom
because usually we're the only ones here.
I love my mom and she's my hero here.
She has been with me my whole journey.
I appreciate her a lot.
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"Our Caps Your Cause"
New Ongoing Fundraiser
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Anyone in the Midwest area drink Prairie Farms milk? Their program is called "Our Caps, Your Cause" and can help raise money for the Shwachman-Diamond Syndrome Foundation! For
each code redeemed, Prairie Farms will donate $0.05 to SDSF!
Ask your friends, family, coworkers, and anyone you know to COLLECT CAPS or, you can ask friends and family to take a picture of the code and email/text it to you!! All you have to do is redeem milk cap codes on the following site and choose our organization from the drop-down list! Redeem codes here---->http://www.prairiefarms.com/our-caps-your-cause-redemption.aspx
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Some of you may have noticed that when Michele died I stated that we wanted contributions made to SDSF in her honor.
I know it's traditional to say
in
memory of the deceased,
but that is not what I thought appropriate for my daughte
r.
The definition of honor is "respect that is given to someone who is admired, of good quality and character." That is a perfect description of Michele.
To each and every one of you who sent us cards, emails, text messages, notes, and made contributions to SDSF in Michele's honor, you have our heartfelt thanks. Greg, my family, and I greatly appreciate each of them. I read every condolence we've received, even though I have found it difficult to respond to them.
Michele was not only my daughter, she was my best friend and my buddy. Most people, who know us well, thought we were joined at the hip - and they were right. Michele would tell the doctors that we were a team, and we were.
When I started this organization 20 years ago, I knew that a cure would not be found in time to save my daughter, although I would have loved to have been wrong. However, during the past 20 years I have watched as far too many of our children and young adults have died as a result of SDS. I have seen, and now have personally experienced the heartbreak that a mother/family feels when their child dies. It is, I assure you, completely indescribable and devastating.
I promised Michele that I will keep on fighting to help all of the other patients and I will. To me, the definition of honor applies to all of our SDS patients. I urge all of you to Honor your child, grandchild, or friend's child NOW.
Greg and I have been making monthly donations to SDSF for some time. This is the simplest way to support our children. Your donation is automatically withdrawn from your checking account.
I truly believe that in working together and honoring each of these precious children, we can stop this disease from taking any more of our children away from us.
Honor your child. Together we are SDS strong.
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Grant Proposals
by Joan Mowery
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What is a grant proposal and how does the SDSF Board make sure that we select the very best grant to fund?
The process is time consuming. Any researcher wishing to apply for funds from SDSF must submit a letter of intent. This letter briefly explains what their study is about. The letter is then forwarded to our medical advisors who determine, from the standpoint of possible benefits to the patients, if the research is worthy of further consideration. If it is determined to be, the advisors are asked to submit a complete proposal, which includes costs, time devoted to the study, and even costs of supplies needed. That proposal is then submitted, through our medical advisors, to independent researchers to evaluate its worthiness. If they determine it is worthy, it is returned to the SDSF Board with a recommendation to fund.
I tell you this because I want you to understand that this is a complicated process. We do not just randomly select research proposals and fund them. This year we have been fortunate in that we have had a number of well-respected researchers submit proposals to us for funding. SDSF gives relatively small grants, only $35,000.00 a year for a two year period. Although that may sound like a lot of money, it really is not in the world of research. We feel blessed that researchers are willing to try to help us for so little money when frankly they could, without a doubt, get more funding if they were investigating other, better known diseases.
So here we are at the bottom line:
DO YOU WANT US TO BE ABLE TO FUND THESE GRANTS? We cannot do this without your help.
We need money! Pure and simple. We do not want to have to decline funding a research project that could save the lives of SDS patients because we do not have the money.
So do what you have to - have a garage sale, a car wash, a cake sale, write letters to your friends, have a fun day party, a barbecue - it really doesn't matter.
Each of us needs to take responsibility to help our kids. We cannot expect someone else to do it.
We are trying to save lives. What will you do to help?
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Carmen's Fundraiser
by Christine James
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What do you get when a college student who fought an illness all her life, and gets diagnosed with a rare disease as an adult? Answer - one determined person who raised money for research and spread awareness of her new diagnosis. Meet Carmen, an adult SDS patient. Soon after her diagnosis I sat down with her mom and twin sister over coffee. Quietly they took in all the information and stories I told them. In that meeting, Carmen stated that she wanted to hold a fundraiser for SDSF. One day of Memorial Day weekend, Carmen and her family hosted a family style fundraiser on their farm. There were games,
raffles, crafts, face painting, music, and lots of food. Her family, friends, and community came together to help
and honor Carmen with a successful event. On behalf of SDSF, thank you Carmen, family and friends for all your hard work, and donations.
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5th Annual Tough Mudder Run
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On June 6, 2015, the Kilby family traveled to Mount Snow in Vermont for the 5th Annual run to raise awareness and funding for SDSF, in honor of their five year old daughter, Sarah, so that our organization can fund the research to help fund a cure for SDS. "Sarah's Hitmen" has grown to 15+ of the Kilby's closest friends and family members. They have currently raised over $12,000 in donations for SDSF!
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ARE YOU THINKING OF HOSTING A FUNDRAISER TO BENEFIT SDSF?
Here are ways we can help make your fundraiser a success.
Provide you with bracelets and pens with our logo for giveaways
Help promote your fundraiser using social media and email campaigns
Provide brochures and information about SDS and SDSF
Use of our banner
Reimbursement for costs when providing receipts
Provide 1 on 1 support to make your fundraiser a great success
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Board Member Introductions
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SDSF welcomes our newest board members!
Stephanie Gregoretti
Hi, My name is Stephanie Gregoretti and I was asked to become a board member for The Shwachman-Diamond Syndrome Foundation in October of 2014. I am so excited to join the foundation and help out any way I can; my focus is Family Support. My goal is to offer the best possible support to all our families,new, current and seasoned. Wether your a new family and just looking for local resources and info or a family that has hit a bump in the road or needs help with more complex issues like transplant, I am always here for support and guidance. I always wanted to make a career in social work and just might follow that dream one day! I truly feel there is no better support than from someone who "has been there" and "gets it"and that's me! I have also been working in the dental field for the past 14 years. I just recently went back part time after taking off the last few years to primarily take care of my son. My family and I are from New York. I have two incredible boys, Anthony who was clinically diagnosed at 2 years old, and James who is unaffected. We are a sports loving family and enjoy spending our time together. We attended Camp Sunshine in 2014, and was able to meet other families affected by SDS for the first time and it was an incredible experience. We all became an instant family. I would like to extend that feeling to all of you. I look forward to serving, advocating and helping support, research and find a cure for Shwachman-Diamond Syndrome.
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DON'T FORGET TO REGISTER YOUR SDS PATIENT (YOURSELF IF THAT IS THE CASE) IN THE SDS REGISTRY. IT IS IMPERATIVE TO HAVE THIS DATA AND TISSUE ON HAND FOR ANY FUTURE CLINICAL TRIALS
www.sdsregistry.org
If you are already registered, please remember to send in annual updated medical records and fill out the annual questionnaire obtained from the Registry.
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Contacts:
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PRINICIPAL INVESTIGATOR:
Director
Akiko Shimamura, MD, PhD
INVESTIGATORS:
David Dale, MD
Kasiani Myers, MD
Richard Harris, MD
Stella Davies, MBBS, PhD
Registry Contacts
Call or email to join registry, ask questions and discuss registry issues.
Audrey Anna Bolyard, RN, BS
SDS Registry at the Fred Hutchinson Cancer Research Center
Main: 206-543-9749
Toll-free: 800-726-4463
Joan Moore
SDS Registry at Cincinnati Children's Hospital
ADVISORY COMMITTEE
Johanna Rommens, PhD
Monica Bessler MD PhD
Jeffrey Lipton MD
SCIENTIFIC COMMITTEE
Dan Link MD
Soheil Meshinchi MD
Kathy Sakamoto MD
Sam Kocoshis MD
LAY REPRESENTATIVES
(appointed by the SDS Registry Advisory Committee)-email these reps with any questions or comments you may have to relay to the Registry
Matt Palmer PhD
Former member of the SDSF Board of Directors
[email protected]
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Communicate with Other Families
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Or for more public sharing with your friends and families of your SDS experience,
like our official Facebook page! Feel free to upload pictures of your kids, families, stories, videos, anything!!
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Ongoing Fun Fundraising Ideas
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Here are a few examples:
Rubber Bracelets
We have NEW SDSF rubber bracelets. These are a perfect conversation starter about SDS. We would like everyone to have them and wear them. We would also like to suggest that you either give or sell them to everyone you know. Or give them to your family and friends and ask that they make a donation to SDSF. Or if you prefer, you make the donation and give them as gifts. Contact us at [email protected] to order them.
T-Shirts
SDSF T-Shirts are available Show your support for SDSF and SDS by ordering one today!
$15 adult $12 children
Sizes Available:
Adult XXXL, XXL, XL, L, M, S
Children's XS, S, M, L
Shipping $5 for 1 to 3 shirts.
Contact us at [email protected]
to order them. Payments can be made through our donate button and specify number, sizes and address to be mailed in the notes section.
Letter Writing Campaign
Perhaps the easiest of all! Go to our
website to see sample letters. You can mail/email to family/friends, business assocaites and include our Donate page link in the email for fast and easy giving.
Flash Drive Fundraiser
 In her own effort to increase awareness of Shwachman Diamond Syndrome and to fund ongoing research and family support, Donna Garfield, is conducting a flash drive fundraiser. All funds raised will be donated to the Shwachman Diamond Syndrome foundation. The flash drives sell for $15.00 and are 2GB, the perfect size to hold family medical records, or schoolwork for your budding scholar. Order one for yourself, or many to resell!
To place an order simply send SDSF an email,
[email protected], letting us know how many flashdrives you would like. Payment can be made through our
donate button on the SDSF website.
You can also send a check to:
SDSF
P.O. Box 40
Avon, NY 14414
Recycle Old Cellphones
 How many old cellphones are lying around your house and your family, co-workers and friends' houses? We have a way that you can help the ecosystem and help SDSF at the same time. And we can all do it. It's an easy way that everyone can help raise money to support research and all of the other work SDSF does.....recycle cellphones. SDSF has been registered with
www.recyclingfundraiser.com. Start a recycling campaign by contacting family, co-workers and friends. When you have collected the cellphones go to this company's website. They will give you instructions on how to download and print a FREE shipping label.
To make sure SDSF gets a check for your shipment, please put the SDSF return address on the shipping label.
Shwachman-Diamond Syndrome Foundation
P.O. Box 40
Avon, NY 14414
This is easy-has no cost to you--and most importantly will help SDSF continue it's work to help our kids.
Please contact
Joan Mowery with questions.
On-line shopping
Do you shop on Amazon.com? You can support SDSF by shopping at AmazonSmile. Amazon donates 0.5% of the price of your eligible purchases to the charitable organization of your choice. AmazonSmile is the same amazon you know. Same products, same prices, same service. Support SDSF by shopping at AmazonSmile.
Matching Grant Program
Does your employer have a matching grant program? Ask them to include SDSF in their Giving Program. You can also inquire if they will match your donation. SDSF is in the Morgan Stanley Employee Giving Program database.
Thrivent Choice Dollars®directions can help Shwachman-Diamond Syndrome Foundation Are you a member of Thrivent Financial who's eligible to direct Choice Dollars®? Choice Dollars charitable grant funds can make a world of difference to SDSF as we work together to support and educate families about SDS. By directing Choice Dollars, eligible Thrivent members recommend where they feel Thrivent should distribute a portion of its charitable grant funds. Directing Choice Dollars is easy. Simply go to Thrivent.com/thriventchoice to learn more and find program terms and conditions. Or call 800-847-4836 and say "Thrivent Choice" after the prompt.
If you have any questions and would like to contact the representative from SDSF about Thrivent contact Jenni Wachter at
[email protected].
Bravelets Do you know someone that needs some encouragement? Give them a gift that gives back. With each purchase of a Bravelet $10 will be donated to SDSF. These bracelets' and necklaces' mission is to help people to BE BRAVE. Consider purchasing a Bravelet and help SDSF and a special someone. https://www.bravelets.com/bravepage/shwachman-diamond-syndrome-foundation
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Thank You For Your Donations
(January 24, 2015 - August 8, 2015)
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Rose & Frank Canonico
Nicole Carpiniello
Deana Valiante
Steven Kilcrease
James Conroy
AmWins Brokerage
Morgan Stanley, Cybergrans, Inc.
Alison White
Dominick Darcangelo
Jennifer Terranova
Erin Healy
Roberta Russey-Goldstein
Ashley Lilly
Donna Garfield
Bryan Feiler
United Way of Greater Niagara
In Honor of Carmen Puma -CEI Investments, Inc., Jay's Concrete Inc. & Terry Lunch
In Honor of Brian & Kelse Richards - Melissa Richards
In Honor of Frank & Rose Canonico and Jen & Bryan Avroch - Steven Avroch
In Honor of Roin Porrata - Anthony Porrata
In Honor of Wade Watcher - Jennifer Watcher, Terry Duvall
In honor of Marissa Avroch - Dianne Moschetta, Harriet Drucker
In Honor of Brickelle Ballenger - Linda Kelso
In Honor of Lukas Fletcher - L. Gay Davison
In Honor of Jessica Bodron - IBC Precision Inc.
In Honor of Anthony Gregoretti - Ronnie Caccio
In Honor of Anthony Del Re - Christian & Gina Del Re
In Honor of Bordelon Family - Wardette Ducote
In Honor of Chilton Price - Larry & Alice Brown
In Honor of Michelle Ellebrecht - Robert & Caralmae Knickmeyer
In Honor of Roman Shen - Susan Cox
In Honor of Gracie Van Brunt - Gracie Fund
Wall Writing Campaign
In Honor of Joe & Jonathan Wall
William & Maricely Kline, Louis & Deborah Giorgio, Jean Ktrudesdale, Deborah & James Risotti, Richard & Jean Serino, Barbara Wall, Cummings Properties LLC,
John & Katleen Rogers, David & Nancy Patrick, Kevin & Mary Hellrigel
Rohe Fundraiser
In Honor of Danny Rohe
Pete & Vicki Scalia, MaryAnne Hathaway, Melissa Wittich, Karen & David Bernard, Randall & Cindy Houser, Jeffrey & Kristi Eberhart, Cincy Dream Moms, Inc.
5th Annual Tough Mudder Run
In Honor of Sarah Kilby
Jennifer Watcher, Julie Alfano, Stephanie Norris, Wendy Goldstein, Robert Kilby, Robert Kenton, JoAnn Durette, Thomas Qualey, Roger Ward, Mark Siegel, William Collins,
Judith Bassignani, Eric Martin, David Leone, Eric Steenstra, Douglas Williams, Michael Cerasuolo. Fitness Brokers USA, Inc., Carol Sacchetti, Anne Ferara, Mark Flynn, John Leahy, Chris Daigle, Steven Melaragno, Dale Fogg, Matthew Ludwig, Millie Cassidy, Ken Morrell, Tracy Manford, Kerri Saucier, Jaime Wolfe, Tanis Maher, Kathleen Grugan, Nancy Murphy, Midge & Greg Gallagher, Edward McMellen, Kathleen Wylie, James Sullivan, Jennifer DeLuca, Sean Daly, Ersson Zapata, Stephanie Kilby, James Finucane, Michele Sheppard, Kristina Nadeau, Christopher Bishop. Stephen Shortlidge, Kathleen Bignali, Sean Finucane, Rick Doman, Matt Santos, Francis Sheehan, Mary Murphy, Lee Bingham, Matthew Slowik,
Louis Paciello, Gary Senecal, Paul Dolan, Karen Hopkirk, Mary McVeigh, Keith Fogarty, Kenneth Martin, Kent Matn, Mary Ellen & Rusty McGranahan, Patrick Rielly, Michael Cochran, Michael Sechrest, Stephen Flanagan, Ronald Krieger, Ted Stenovitch, Thomas Cianciola, Derek Davey, Heather Stavens, Barbara Cioffi, Adam Sherman, Lisa Taylor, Debbie Paquette, Michelle Lozeau, Kristen Cramer, Joseph Mills, Jeff Capron Inc., Daniel Minerva, Matthew Way, John Mazzucco, Kelly Thompson, Donna Flannery, Marie DiGiulio, Dolores Mazzucco, Mary Contino, Cathleen Jacobson, Michael Gallaher, Frank & Beverly Hounsell, Karen Krentz, Stephanie Taylor
In Loving Memory of Michele Ellebracht Mowery
The Mowry Family, Robert & Caralmae Knickmeyer, Marisa Figueiredo, Sharon Lamb, Kristen Krausen, Cornelius DeBoer, Natalie Stephenson, Kimberly Robbins, Christine James, Jennifer Avroch, Roy Hohn, Jennifer Watcher, Thomas Pendergast, Doris Bull, Joyce Wall,
Edwin & Donna Fattes, Karl & Flora Spuhl, Nancy & Gary Ruick, Shirley Schlett, Panache Plus LLC, Kimberely & David Pentland, Kay Kay, Julie Kreidler, Patti Mowbray, Joni Bodron,
Karen May, Caol Reed, Joan Garrison, Christian Del Re (Ludlow Street Block Party), Darrell Stewart, Jean Burke, Pat Giacin, Nancy Carson, Luther & Antoinette Launius, RoseMary Baker, Jams & Mary Murray, Paul Fischer,
Rick & Laura Wrisinger, Collen & Chuck Appel, Julia appel, Sharon Goodman, Chris Tobnick,
Jerry Tobnick, Stacy & Brian Tobnick, St. Louis County Division of Communicable Disease Services, SDS Canada, Inc., Shwachman Diamond Project
Bracelet Purchases
Lynn Wyker
In Honor of Danny - Alma Valdez
In Honor of Tyler - Amanda Ratliff
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Anderson, SC
Cincinnati, OH
Metairie, LA
Key Largo, FL
Fort Hood, TX
Arlington, TX
Madera, CA
Cambridge, OH
Isabela, MA
Kingsland, TX
St. Clair Shores MI
Laredo, TX
Warren, MI
Humble, TX
Wakefield, RI
Kissemmee, FL
Calgary, Canada
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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, Family Support
Jenni Wachter, Webmaster
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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