Patient & Family Photo Wall is Here!

To all those who graciously provided photos of their families whose lives have been touched by cancer, we are grateful.  The "Photo Wall" is now up. We received more than 300 photos from more than 70 families.  We will rotate pictures to include ones not shown here.  We also are working to see if 3-4 large digital signs can be made available, so that pictures are shown in a "digital picture frame" presentation format.
   

The strength of spirit, and experiences of these children with cancer, their siblings, parents and other family members motivate our team to strive for better breakthroughs and more effective therapies.  We appreciate all those families who are the inspirational "part of our team".     
  

Our thanks to the Ethan Jostad Foundation

I am grateful to Chris, Kim and the community of Eagle Point for their support of our alveolar rhabdomyosarcoma research.  Yesterday's golf tournament had 160 attendees... we'll make sure your commitment to us is matched by tangible results.  Charles

(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 www.curesarcoma.org. For more information about NDRI, please visit http://ndriresource.org/.

Matthew Alsante

Executive Director

Sarcoma Foundation of America

malsante@curesarcoma.org

P: 301-253-8687

F: 301-253-8690

www.curesarcoma.org

Keep Fighting the Good Fight!

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.

  

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 www.ccurefast.org 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!

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.  

We are so proud of Lance

Congratulations to Lance Burrell, an undergraduate member of our rhabdomyosarcoma research team (back in the Capecchi lab days) who has graduated from Weber State University with a Master of Science in Radiological Sciences, Emphasis in Cardiology.  Lance has always been dedicated to patient care, and to have completed graduate school while working is an impressive accomplishment for Lance and his whole family.