See also our related blog for the Pediatric Preclinical Testing Initiative.

Wednesday, May 23, 2012

(reposted from RH-KIDS) Tissue Donation - Sarcoma Foundation of America Announces Partnership with NDRI

(all content below is from Matthew Alsante, SFA, although this is indeed a great initiative!)
The Sarcoma Foundation of America (SFA) is pleased to announce a new partnership with The National Disease Research Interchange (NDRI), a non-profit organization based in Philadelphia, PA. The NDRI coordinates the collection and dissemination of human cells, tissues and organs to researchers and scientists. The SFA has partnered with NDRI to provide sarcoma patients with the opportunity to donate tissues, and have those tissues distributed to scientists who are studying sarcoma. Sarcoma patients will be able to donate samples of all forms of sarcoma obtained from biopsy procedures or other medically necessary surgical procedures. NDRI coordinators will discuss donation opportunities, either from a surgical procedure or post mortem (after death, like in donation for transplant), to aide sarcoma patients and their families in making the appropriate donation decision.
Patients interested in organ and tissue donation for sarcoma research can learn more about registering with NDRI as a donor by contacting a NDRI coordinator today, by calling 1-800-222-NDRI (6374). NDRI Coordinators are available to speak with patients 24 hours per day.
You can learn more about the Sarcoma Foundation of America at For more information about NDRI, please visit

Matthew Alsante
Executive Director
Sarcoma Foundation of America
P: 301-253-8687
F: 301-253-8690
Keep Fighting the Good Fight!

Sunday, May 20, 2012

Our thanks to the Biopathology Center!

We are grateful to the Biopathology Center, which is also the pediatric division of the Cooperative Human Tissue Network (CHTN), for the many ways in which they facilitate our research on Childhood Muscle Cancer (rhabdomyosarcoma) and Childhood Brain Tumors.  With high quality but ‘rare’ samples provided by the Biopathology Center, we have been able to publish dozens of studies.  The unique aspect of many tissues at the Biopathology Center is that samples can be cross-correlated to treatment outcome via the Biopathology Center’s other role as the Children’s Oncology Group Biorepository.  Simply put, we can tell if a potential drug target of interest is linked to survival of patients and we can prioritize our research accordingly.
The Biopathology Center is always also on the cutting edge of advances, including rapid yet user-friendly sharing of high resolution slides in an electronic scanned format and specialized, annotated tissue microarrays for specific diseases.  For autopsy-derived tissue, which may be the most important kind of tissue for scientists to study (see our peer-reviewed paper), the Biopathology Center has been a key strategic partner.

Saturday, May 19, 2012

Jen presents Autopsy Barrier study results at APOSW

This year’s Association of Pediatric Oncology Social Workers topic was Exploring Sustainability: Promoting Pediatric Oncology Social Work in the Changing Healthcare Environment
12 posters were selected for the conference – during the two hours poster presentation many people stopped by and were impressed with our work and the idea of a Legacy Gift, saying that they have many patients whose family could benefit from leaving such a gift. Attendees had a lot of great questions and many asked for further information or planned to check our website for more information on guidelines/how to’s and our handouts. Melissa Hill of the Northwest Sarcoma Foundation joined in the poster presentation of our joint work. 

Other topics of discussion/workshops were: 
Sustaining Ourselves: Healing Ourselves While Healing Others
The CARES Program:  Utilizing the Community to Increase Sustainability of Patients and Families
Social Skill Training For Adolescent and Young Adult Brain Tumor Survivors
Establishing Skill Sets:  Staying the Course When Faced With Pediatric End of Life Challenges
our thanks as always to Nancy Goodman, the inspiration for study and efforts!

Friday, May 18, 2012

Our thanks to the Faith Fulmer Foundation

We are grateful to JoLayne, Lou and the Medford community supporting the Faith Fulmer Foundation for their advocacy of our personalized therapy clinical trial project for dogs with osteosarcoma.  It is an honor to be part of Faith's rememberance.