FALL 2019 NEWSLETTER
Sarcoma News Corner
Having a leg amputated because of synovial sarcoma did not stop this young
Australian woman from becoming a Paralympian and Reebok ambassador, or
competing on Dancing with the Stars. Read her inspiring story here!
This video interview with Dr. Sandra D'Angelo discusses the clinical trial for sarcoma of combining the immune stimulator NKTR-213 (bempegaldesleukin) with the checkpoint inhibitor nivolumab.
September was Childhood Cancer Awareness Month, and as about one in seven
people diagnosed with sarcoma is a child or adolescent, here’s an appropriately
awesome story! Parents of children with sarcoma often have to learn nursing skills such as giving shots or running IVs at home. This mom went further to became a nurse in the same unit where her daughter was successfully treated for rhabdomyosarcoma.
Recently, there have been a couple of great regulatory advances for new sarcoma treatments!
The FDA has granted breakthrough therapy designation for nirogacestat, a gamma-secretase inhibitor, for desmoid tumors and some fibrosarcomas, based on amazingly good early clinical trial results. All of the patients showed either tumor shrinkage or stable size over the course of treatment.
An immunotherapy agent (SPEAR T-cells targeting MAGE-A4) for soft tissue sarcoma, in particular synovial sarcoma and myxoid/round cell liposarcoma, has been granted orphan drug status by the FDA. This status gives pharma companies incentives for developing treatments for rare diseases.
Sarcoma Awareness Month
Sarcoma Awareness Month this past July was a HUGE success! On and offline, we saw so many sarcoma stories shared and yellow-clad supporters raising awareness—drawing, running, paddling, and doing everything in between.
In honor of Sarcoma Awareness Month, LAWA/LAX Airport lit its iconic pylons the evening of July 10th through sunrise on July 11th. The Sarcoma Alliance received media attention on local news channels and social posts via @flylaxairport, reaching thousands of followers on Facebook, Instagram, and Twitter!
A sunrise gathering was held at the Hyatt Regency LAX from 4-6AM, where 25 early birds attended including SA's local MABs Dr. Charles Forscher and Dr. William Tseng and members of Team Ocean of Hope.
2019 Sarcoma Exchange
The Sarcoma Alliance kicked off its 2nd annual Sarcoma Exchange last weekend at the Miami Airport Marriott. We were overwhelmed by the sheer amount of love and support that radiated throughout this event and are so appreciative of all of the amazing people who were able to take part.
We're thrilled to share that we reached more than 1,800 people online through our live stream and 100+ in-person attendees were from 24 different states, representing 22 sarcoma subtypes that came all the way to attend.
We'd like to give a big thanks and lots of love to:
Our Facilitators
M.D.s Gina D'Amato, Robert Maki, Robert Benjamin, Andrew Rosenberg, Jonathan Trent, Shree Venkat, Neha Goel, Raphael Yechieli, and Mauricio Soares. Physical Therapist Annemay Lelis. Nonprofit Partners Lori Hoffman, Belinda Paulicin, and Kim Praitano. Sarcoma Alliance Board Members Suzanne Schwartz, Jennifer Nellany, Joan Darling, Susan Brown, Marites Tullius, and Dave Murphy. The amazing Musical Performers Negleatha Johnson and University of Miami, Frost School of Music string quartets.
Our Sponsors
Lilly, Eisai, Epizyme, Novartis, Genentech, and Daiichi-Sankyo
...and of course all of the attendees!
View our live feed from the sessions on our Facebook page under videos! https://www.facebook.com/pg/sarcomaalliance/videos/
Save the Date!
2020 Sarcoma Exchange | Los Angeles, CA | July 17-19
Did You Know?
The Sarcoma Alliance has partnered with Angiosarcoma Awareness!
Angiosarcoma Awareness is a patient-driven nonprofit founded by Dr. Corrie Painter and the late Lauren Ryan, both of whom battled angiosarcoma. The organization raises funds for laboratories and research initiatives that focus on angiosarcoma. Through their funding, they aim to support better therapies and research for a cure. To learn more about Angiosarcoma Awareness founder Dr. Corrie Painter, check out this article from the Cancer Couch Foundation!
Angiosarcoma is an extremely rare and aggressive sarcoma in which the inner lining of blood or lymphatic vessels (endothelial cells) grow uncontrollably, creating more blood vessels that combine to form a tumor. This sarcoma can occur anywhere in the body and has a high rate of metastasis.
The Sarcoma Alliance has funds available specifically for Angiosarcoma patients to seek second opinions from experts. For more information, please email us at info@sarcomaalliance.org or apply directly for our Assistance Fund.
In honor of our late founder Suzanne Leider, the Sarcoma Alliance recently partnered with Revive Charitable Jewelry to create handmade pieces inspired by cell images of her subtype synovial sarcoma. Designed to honor loved ones, empower survivors, spread awareness, and change stigmas, this sarcoma-inspired jewelry line celebrates the positives while generating funds to help sarcoma patients. These pieces are more than just jewelry; they're hope strength, awareness, charity & connection to our sarcoma community. Check out them out here!
