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As the nights grow longer and colder I yearn for the warmth of summer and my SDS family at Camp Sunshine. This year we had an amazing turn out. We had 51 families attend, up from 30 the previous year! For the first time we had many adult patients and customized a few sessions just for them.
We heard from Dr. Seth Corey about his research with zebrafish and SDS. Dr. Elizabeth Kerr presented about neurodevelopement in SDS patients and their accomplishments as teens and adults. Along with presentations from Johanna Rommens PhD, Dr. Blanche Alter, Dr. Akiko Shimamura, Dr. Kas Myers, Dr. Lori Burroughs, Dr. Sabina Sabharwal, Dr. Gary Tobin,and Jenelle Leighton BSN. Dr. Johnson Liu was able to squeeze in a day from his busy schedule to spend with the adult patients. Thank you to all the presenters for caring about our SDS families and taking time to help educate and support our families. I am so grateful for the hospitality and hard work everyone puts in at Camp Sunshine for every session. The volunteers too are invaluable. Many families stay in touch with them year after year. This year the entire Board of Directors attended Camp Sunshine. Thank you for taking time from your families and helping out at the front tables, welcoming families and joining in impromptu meetings. And thank you to Nancy Cincotta, Psychosocial Director at Camp. Nancy remains the keystone of the relationship between Camp and SDS families. It was great meeting new families and connecting with returning families. I am looking forward to summer of 2018 and hoping for another full house.
I am excited to announce we are co-funding with the Shwachman-Diamond Project the research of Dr. M. Raaijmakers, "'Reconstructing ' Leukemogenisis in Shwachman-Diamond Syndrome". An article was recently published in
The Kashmir Monitor about his research
. I am eager to read his research progress updates. His research will be presented at this year's convention of American Society of Hematologists in San Diego.
We are also re-funding the research of Dr. Seth Corey, of VCU, for another year. "We have great confidence that these small fish will illuminate the mechanisms by which Shwachman-Diamond Syndrome arises and, hopefully, lead to drug development to prevent its complications," Dr. Corey writes in a summary in this newsletter about his research with zebrafish. His research was chosen to be presented this year at the American Society of Hematologists annual convention in December. This is a huge honor.
Representatives from SDSF are attending the ASH conference in San Diego, December 3-5. If you or some one from your medical team is attending please stop by our booth, #3122. Joan, Pam and Katya would greatly appreciate meeting you.
Thanksgiving is right around the corner. I am thankful for; my loving husband and his dedication to his military service, my amazing son and his ability to overcome hurdles life has thrown in his path, my son's wonderful health care providers, friends and family for all their support, and the Board for their hard work and passion for SDSF and the families we support. I am thankful for SDSF and the support it has given me when my son was diagnosed with SDS 10 years ago. I was given the tools I needed to become an advocate for my son and help educate his medical team to provide the best care with current treatment plans. I am fortunate I am able to give back by volunteering my time to SDSF and help families as SDSF has done for me.
SDSF is a public non-profit and depends on donations to support and educate families, fund research and spread awareness. Giving Tuesday is the Tuesday after Thanksgiving and Cyber Monday. What are you thankful for? How are you giving back?
Join us on giving Tuesday by sharing what you are thankful for and how you are giving back. Include an unselfie and share on facebook and twitter and don't forget to tag us! #unselfie #givingtuesday #cureforafuture #shwachmandiamond @cureforafuture
Shwachman-Diamond Syndrome Foundation has been accepted into the Combined Federal Campaign, CFC. If you are a federal employee, in the military, or know someone who is, please consider making SDSF your choice for donation. Designate #10799 as your charity. And please pass it on.
I'd like to hear from you. What would you like to see from SDSF? What would you like to see in the newsletters? Would you like to submit and article to the newsletter? Did you have a successful fundraiser? Tell us about it and you could be featured and help others succeed too. Contact me at christine@shwachman-diamond.org.
Looking forward to reading your emails.
Sincerely,
Christine James
President
Shwachman Diamond Syndrome Foundation
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CHARACTERIZATION OF ADULT ZEBRAFISH WITH SDS
Dr. Seth Corey of Virginia Commonwealth University has received funding for a second year from SDSF for his research of zebrafish with SDS. Using a genome editing technique zebrafish with several mutations in SBDS are created and these affected fish can be studied more cheaply than mice. Please read his summary by clicking the button below.
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GRANT RECIPIENT FROM THE NETHERLANDS
Shwachman-Diamond Syndrome Foundation and the
Shwachman-Diamond Project are co-funding the research of Dr. Marc Raaijmakers of the Erasmus MC Cancer Institute in The Netherlands for his work titled; 'Reconstructing' leukemogenesis in Shwachman-Diamond Syndrome . An article in the Kashmir Monitor spotlights Dr. Raaijmakers research with bone marrow inflammation and leukemia which can be read using the button below,
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Camp Sunshine - Attending as an Adult Patient
by Doris Bull
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Camp Sunshine this summer was a wonderful experience! . . .
Andrew and I had attended Camp Sunshine nine years ago when he was 17 years old. That year was different because Andrew spent the majority of his time in activities with the teens. This time around we attended the medical meetings together along with some counseling sessions. Like most of our SDS kids, Andrew is a trooper. He has learned to undergo all his medical treatment without complaint. He rarely opens up and talks about SDS. It was great to have parents ask him questions and give him the opportunity to express what is difficult for him. It was therapeutic for him to have the opportunity to be an adult SDS expert.
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Anthony completed this project in school. It was the first time he has ever spoken publicly about having SDS, especially around his friends. He never liked to talk about it. This year, Anthony really is accepting and has become more confident that this is just part of who he is!
"Hi my name is Anthony Gregoretti and I am unique because I am 7 years old and I have Shwachman Diamond Syndrome. That just means that my body works different, we are all different. I take infusions and shots every week and take lots of medicines and stay away from germs. I go to doctors and hospitals too much but that's ok. Sometimes I don't like Shwachman- Diamond Syndrome and sometimes I do and you can too."
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Fundraising Made Easy!!!
by Christian Del Re
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Coming up with fundraising ideas can seem like a very daunting task. It can be overwhelming to decide what type of activity to undertake, who to involve, and how to even get started. Even after you come up with an idea, figuring out where to begin can become the next challenge. With that said, not every fundraiser needs to be an epic annual event, even though those that are do bring in large amount of funds for SDSF.
In the past two years, my family has undertaken a number of fundraising events, big and small, and they did not consume too much of our time, they were easy to plan, and mostly involved our local community, friends, and family. For each event, SDSF was there to support us.
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T-Shirt Fundraiser - Easy Money!
by Jenni Wachter
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We designed and sold t-shirts as a fundraiser for SDSF and it was a very easy way to make money AND help raise awareness for Shwachman-Diamond Syndrome. . . . All of the t-shirt customers are happy to support us and SDSF and while they're wearing their shirt, they are helping us raise awareness for Shwachman-Diamond Syndrome. It's a win-win!
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Kids Making a Difference!
Child friendly Fundraising Ideas
by Stephanie Gregoretti
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The last few weeks of summer, my 10 year old son came to me and told me that he wanted to raise money to find a cure for his brother. He decided he was going to make rubber band bracelets and sell them to our family for $1.00 each. He enlisted the help of his brother, dad, and myself and started making bracelets right away. I was so proud of him and wanted to share his amazing idea with our SDS families so I posted it on the Facebook support page; before I knew it, everyone wanted a bracelet! . . .
The reason why I am sharing this is because my son inspired me to want to inspire other children to help make a difference. There are so many ways to empower our children and get them involved in fundraising. What my children have gained from this experience could never have been taught. Talk to your children and find out what interests them and start planning!
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This year,
on Tuesday, November 29, 2016, SDSF is participating in #GivingTuesday, a global day dedicated to giving. Last year, more than 45,000 organizations in 71 countries came together to celebrate #GivingTuesday. Since its founding in 2012, #GivingTuesday has inspired giving around the world, resulting in greater donations, volunteer hours, and activities that bring about real change in communities. We invite you to join the movement and to help get out and give this November 29. There are many ways to get involved in #GivingTuesday. We encourage you to join the movement and visit www.givingtuesday.org to learn more about how you can make a difference. Be watching on the SDSF Website and our SDSF Facebook Page on how you can join the movement with us.
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Pleasanton, CA
Glasgow, KY
Seoul, Korea
New Market, VA
Cleveland, OH
Doral, FL
Westminster, MD
Surprise, AZ
Nottingham, England
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Thank You For Your Donations
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Donations received between June 21, 2016 - October 25, 2016
Rose & Frank Canonico
Mike Leistner
Patricia McDonnell
Lauren Newman
Kristi Lafiandra
Robert Costello
Rosemarie O'Neil
Marilyn Lee
United Way of Central New Mexico
United Way of Greater Niagara
Thrivent Choice
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In Honor of Jessica Bodron
- Timothy & Joni Bodron, Precision IBC, Inc., Joan Meister & Geri Hand
In Honor of Troy & Kelsey DeBoer - Lois DeBoer
In Honor of Gracie VanBrunt - Paul Rogers & Rose Lasaosa
In Honor of Roman Shen - Ray Whaley, Melissa Ibanez, Susan Cox
In Honor of Collin Brown - Richmond Rotary Club
In Honor of Marissa Avroch - Alyssa & David Diaz
In Honor of Anthony Gregoretti - Karin Mazza
In Honor of Quinlan Kohn - Carf International
In Honor of Anthony Del Re - Richard Kaiser, Antonella Puntillo, Rhea Restivo, Viana Vassallo, Gladys & Donnie Joynes, Karen Hahl (Loring Avenue Block Party), Colby Salzano, GPM Pediatrics, Robert & Nicole Sosa
In Honor of Chris Garfield - Donna Garfield
In Honor of Tavi Erni & Family - Stephanie Lord
In Honor of Emma Taylor - Paul Taylor & Evonne Shea, Julia Tong, Kai Ming & Ivy
In Memory of Michele Ellebracht Mowery - Merielle Peacock, Kelly & Steven Richtarik
In Memory of Carol Burger - Sarah Enos Brown
In Memory of Heather Pendergast - Thomas & Penelope Pendergast
In Memory of Cami Smith - Carl Smith
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Thank you for your monthly donations
Nicole Carpiniello
Steven Kilcrease
Deana & Jeffrey Valiante
Anthony Porrata
Maria Hall
Vickie Cox
Andrea Wolf
In Honor of Wade Wachter - Wade Wachter
In Honor of Marissa Avroch - Dianne Moschetta
In Memory of Michele Mowery - Joan & Greg Mowery
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Fundraisers
T-shirts, Pins, Charms, Bags
Julie Catalano
Greg Fletcher
Mika Cary
Carl Smith
Jennifer Earl
Brian Largent
Christian & Gina Del Re
Julie Walden
Lori Jacobsen
Patricia Kamienski
Vicki Brown
Ashley Via
Robert Kilby
Jennifer Reutlinger
Perkins Restaurant "Dining to Donate" for Anthony Del Re
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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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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 RĂ©, 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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