SUMMER 2020 NEWSLETTER
Sarcoma News Corner
Interview with sarcoma expert and Sarcoma Alliance board member Dr. Gina D'Amato discusses new advances in sarcoma treatment. Exciting indeed!
A clinical trial compared the European and US standard treatments for Ewing sarcoma. Results showed the US treatment had better outcomes. Links to ASCO abstract.
Researchers have developed a test that may tell which patients treated with doxorubicin (adriamycin) will develop heart problems. This could be game-changing for sarcomas, as doxorubicin or other anthracyclines are common sarcoma chemotherapy drugs. Links to technical article.
Encouraging story about how doctors, pharma, and the FDA worked together to keep a sarcoma patient on an experimental drug, ALRN-6924, that was working. COVID-19 meant that he could no longer travel 1400 miles to take part in the clinical trial, but his team worked to bring the drug, which inhibits proteins MDM2 and MDMX, to him.
Good news! The European Medicines Agency has recommended approval of Rozlytrek (entrectinib) to treat NTRK fusion positive cancers, including sarcomas.
A record-holding college athlete talks about his recovery from Ewing sarcoma and return to athletics, even though this year's competitions didn't happen. Inspirational!
July is Sarcoma Awareness Month
June is coming to an end and that means that Sarcoma Awareness is quickly approaching! We're very excited to announce that this year we will be hosting our next webinar on July 17th at 9:30am PDT. Sarcoma Alliance Medical Advisory Board Member and sarcoma surgeon, Dr. William Tseng will be talking about the importance of expert opinion in sarcoma and raising awareness. To register or receive information about upcoming webinars, please click the button below!
Interested in learning more about how you can raise awareness for sarcoma this July? Check out some of the ideas on our website's Sarcoma Awareness page. More updates on Sarcoma Awareness month are to come—keep an eye out for them!
Sarcoma Exchange
In order to protect our community in the wake of the global COVID-19 pandemic, we have changed the dates for the upcoming Sarcoma Exchange. This year's conference will now take place: October 2-4, 2020. We currently have space for the conference at the Hyatt Regency LAX, and will also host the entire conference online as well. Leaders are currently evaluating making the conference completely virtual this year to protect our participants with a final decision in the weeks to come.
The Sarcoma Exchange is an educational weekend dedicated to sarcoma patients, survivors, and the people who support them. Participants will have the opportunity to attend seminars on topics ranging from the latest in treatments to exercise as medicine. In addition, this weekend will provide people with plenty of time to connect with one another. If you haven't already signed up, we'd love for you to join us! For those who are not able to attend in person, we will be recording live webinars of the event for you to watch from the comfort of your own home. Click below to learn more or to register.
Thank You, Sponsors!
We would also like to give a big thank you to all of our Sarcoma Exchange sponsors who have helped to bring this conference to life. Thank you for your dedication to supporting the sarcoma community.
Peer-to-Peer Program
Facilitating support and connection between people facing sarcoma is an important part of what our organization does, and for the past 15 years, we are honored to have been able to do this through our Peer-to-Peer program.
We're happy to inform you that we are partnering with Imerman Angels, a nonprofit organization that specializes in one-on-one support for cancer fighters, survivors, previvors, caregivers, and their loved ones. As part of this partnership, Imerman Angels will be expanding their program to include one-on-one matches for people facing sarcoma anywhere in the world and at any stage in their cancer journey. Through their unique matching process, Imerman Angels connects people to a “Mentor Angel” who has similar life and cancer experiences. Their staff offer continued support and guidance throughout the process, and even offer all services in Spanish, which is something that we at the Sarcoma Alliance have not had the capacity to do. Our hope is that through this partnership, people in our community will continue to develop meaningful connections with one another while benefiting from more resources and opportunities.
What does this mean going forward?
The Sarcoma Alliance will be transitioning out of administrative support for current peer-to-peer matches and will stop pairing new matches. Current peer-to-peer matches are welcome to continue to keep in touch if they so wish.
Anybody who is looking for one-on-one support for sarcoma will be referred to Imerman Angels, in addition to receiving information about our resources and online Facebook support group.
As they receive more applications from people with sarcoma who wish to give or receive support, Imerman Angels will add them to a database and then work their matching magic from there.
We will be looking for people willing to step forward and register as sarcoma “Mentor Angels.” If this is something you, or somebody you know, would be interested in, more information is available here. Please mention in your application that you were referred to by the Sarcoma Alliance.
As we transition into this new partnership, we would appreciate your support in sharing this information with those who you think may be interested in one-on-one support—and specifically, those who would like to help out by becoming a sarcoma Mentor Angel. Please don’t hesitate to let us know if you have any questions or concerns.
The Sarcoma Alliance and Imerman Angels share the belief that nobody should face a cancer diagnosis alone. Connection is at the heart of everything our organizations do, and we’re excited about the opportunities this partnership will provide for our community.
You Are Not Alone
Visit the Sarcoma Alliance's Online Support Group 24/7:
A community of support for everyone affected by sarcoma
https://www.facebook.com/groups/sarcomaalliance/
The events of this year have had a significant financial impact on many families in the Sarcoma Alliance community and as a result, we've been receiving an increased number of applications for our financial assistance. If you are in a position to help, please consider donating directly to the Assistance Fund today. Your gifts will be given directly to individuals to reimburse the costs they incur while seeking second opinion consultations.
