Shwachman-Diamond America Blog

SDA home Clinical Features SDA Board Medical Advisor Contact Us Grants Donate Research Resources Request Info Help SDA Genetic Testing SDS  News Newsletter SDS Registry Medical Articles SDA Blog

2013 Shamrock Ride Raises $16,375.00 for SDA

May 2, 2013

A letter from John and Nan Galbreath:

 

"Dear Shwachman-Diamond America,

The Off-Road community has again ridden to the occasion. The 2013 ShamRock Ride Sponsored by Hardline Crawlers was held on March 22, 23 and 24, 2013 with over 120 vehicles participating. Neither the cold weather nor the rain stopped these dedicated people from attending this off raod event supporting Shwachman-Diamond Syndrome. Participants had access to Morris Mountain ORV Park on Friday, Saturday and Sunday. On Saturday night, the annual charity auction was held with donations from Morris Mountain ORV, SRRS, Inc, James O'Neal Dodge, Wide Open Design, The Offroad Connection, Blue Torch Fab, Global Merchandising, Redneck Lights, 4 Wheel Parts and Offroad Solutions. The off road community along with Randy Morris of Morris Mountain ORV has made it possible for us to send to you $16,375.00 to be used to help educate doctors aboutSDS and early detection for better and faster treatment.

Sincerely,

John and Nan Galbreath" 

Shwachman-Diamond America thanks all those who donated their time, telent and treasure to the ShamRock Ride! YOU are the reason SDA can continue its work!  If you haven't liked our page on FaceBook, please do: Shwachman-Diamond America on Facebook   We are also...

[More]

Tags: shamrock ride


Posted at: 03:04 PM | 0 Comments | Add Comment | Permalink

Mystery Diagnosis: Shwachman-Diamond Syndrome

April 30, 2013

Shwachman-Diamond America board member, Christina Wells and her family were featured on Mystery Diagnosis many years ago! Click on the links below to watch the episode: Mystery Diagnosis: Shwachman-Diamond Syndrome

 

Mystery Diagnosis: Shwachman-Diamond Syndrome Part 1

Mystery Diagnosis: Shwachman-Diamond Syndrome Part 2

Mystery Diagnosis: Shwachman-Diamond Syndrome Part 3

Mystery Diagnosis: Shwachman-Diamond Syndrome Part 4

Tags: mystery diagnosis, shwachman-diamond syndrome


Posted at: 08:42 AM | 0 Comments | Add Comment | Permalink

Overcoming Needle Anxiety

April 29, 2013

IG Living recently did an article on overcoming needle anxiety. It might be helpful for families whose members struggle with needle anxiety.  Overcoming Needle Anxiety

Tags: needle anxiety


Posted at: 09:39 PM | 0 Comments | Add Comment | Permalink

Bone Marrow Pathology Basics

April 29, 2013

Frequent bone marrow biopsies are par for the course in Shwachman-Diamond Syndrome. Here is a great link that explains some of the bone marrow pathology you might read about on the pathology report. Bone Marrow Pathology Basics

Tags: bone marrow biopsy, pathology


Posted at: 08:52 PM | 0 Comments | Add Comment | Permalink

Alexander's Transplant

April 29, 2013

Today is Alexander's 5th day of chemotherapy. He's in Seattle and will have his bone marrow transplant on May 1, 2013.  If you'd like to follow his transplant journey, his family has a page on Facebook. Alexander's Bone Marrow Transplant Information Page

 

Tags: bmt, sds families


Posted at: 01:47 PM | 0 Comments | Add Comment | Permalink

Shwachman-Diamond America Awards 2 Research Grants!

April 24, 2013

2013 SDA Research Grants have been given to the following researchers:

Sanna Toivianien-Salo, MD. PhD, specialist in radiology, subspecialty in pediatric radiology and neuroradiology, staff neurologist at Children's Hospital, Helsinki Project Title: "Osteoporosis in Shwachman-Diamond Syndrome: Long-term follow-up of bone mineral density and body composition." 

Yigal Dror, MD, FRCP(C), Associate Professor of Pediatrics, Division of Hemtology/Oncology; Head, Hemtology Section; Director, Marrow Failure and Myelodysplasia Program and Senior Scientist, Genetics and Genome Biology Program, Research Institute; The Hospital for Sick Children and University of Toronto. Project Title: "Discovery Leukemia-related DNA lesions in Shwachman-Diamond Syndrome."

Tags: grants, research


Posted at: 10:50 AM | 0 Comments | Add Comment | Permalink

SDA Sponsors the 7th International Congress on Shwachman-Diamond Syndrome

April 24, 2013

Shwachman-Diamond America is a proud sponsor of the 7th International Congress on Shwachman-Diamond Syndrome to be held in Toronto in November.

The call for abstracts is open and the deadline for submission is June 7, 2013. 

 For more information or to register, please visit the website: 7th International Congress on Shwachman-Diamond Syndrome

Tags: international congress


Posted at: 10:47 AM | 0 Comments | Add Comment | Permalink

Mikel's Shwachman-Diamond Story

February 24, 2013

Cincinnati Children's Hospital Channel on YouTube featured Mikel and his family in "Tell me a Story". Mikel has Shwachman-Diamond Syndrome and had a bone marrow transplant a few years ago. Watch his story here.
Posted at: 03:28 PM | 0 Comments | Add Comment | Permalink

Coping With Chronic Illness

September 26, 2012

IG Living recently did an article on Coping with Chronic Illness. It might be a helpful resource for Shwachman-Diamond families.

Tags: chronic illness, coping


Posted at: 09:43 PM | 0 Comments | Add Comment | Permalink

The Impact of Chronic Illness on the Family

July 24, 2012

IG Living just did an article on The Impact of Chronic Illness on the Family. This is definitely an issue that Shwachman-Diamond Syndrome families can relate to!

Tags: chronic illness, coping


Posted at: 09:47 PM | 0 Comments | Add Comment | Permalink

Posts by Date

Recent Posts

Archives