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 [email protected].

Looking forward to reading your emails.