SPRING 2020 NEWSLETTER
Sarcoma News Corner
Every day we post two sarcoma-related news items on our Facebook news page. Here are a few recent posts, but be sure to visit us for much more sarcoma news.
We've made some small but important updates to our application for grants from the Hand in Hand Assistance Fund, which reimburses expenses for seeking a second opinion from sarcoma experts. Lots of info about the grants here, as well as the new application form!
Cancer patients and survivors who are immunocompromised have concerns about how to avoid the coronavirus. The Fred Hutchinson Cancer Research Center has a good discussion of risks and ways to minimize them.
The very important results have just been published for the first CRISPR gene-editing immunotherapy trial for three cancer patients, including a myxoid/ round cell sarcoma patient, whose tumor shrank. This has a link to the full technical article (in which the #sarcoma patient is UPN39). Potentially a huge step forward in clinical research!
A large grant has been given to a UK sarcoma database to identify biological markers that can be used to find new treatments, and determine how well existing treatments are working. As the article emphasizes, international cooperation is key to developing better treatments for rare cancers like sarcoma.
In January, the FDA approved the first drug specifically for metastatic or advanced epithelioid sarcoma, tazemetostat. Great news!
Our Leadership
This January, our incredible Board members met in Southern California to celebrate a successful 2019 and plan for the year ahead. At this meeting they also had the occasion to celebrate our new Board President, Jennifer Nellany and the honoring of David Murphy as Board Emeritus. We feel so happy to have such passionate and dedicated leaders on our team, and are inspired by everything they do to support those affected by sarcoma.
Thank You!
We are also thankful for each and every one of you, and all you've done for us in 2019. As part of our community, you have enabled us to grow and continue to serve as a resource for those facing a sarcoma diagnosis. Your support has strengthened us so that we are able to provide the education, guidance, and support to everyone affected by sarcoma ̶ even during these unprecedented times!
We'd also like to give a big shout-out to our top donors in 2019, whose funding fueled our mission to ensure that everyone facing a sarcoma diagnosis has access to the resources and support they need.
Gina D'Amato, M.D.
Susan Frunzi
Sharon Leider
Sarcoma Exchange 2020
Preparation for the third annual Sarcoma Exchange has been well under way, and please know that we are staying abreast of the potential impacts that COVID-19 may have for this year's conference. The safety and wellness of participants, especially those who are immunocompromised, is of utmost importance to us, of course! We'll keep you up-to-date on any changes in this year's program. Until then, please visit our website for the most current information on our website.
Sending Love
We know that these are uncertain times right now for everyone and COVID-19 adds to everything else you already had going on. We recently read this article on practical techniques for grounding and really liked it, so we thought we'd share it with you all. Sending you all much love. Take care!
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 pandemic has not only impacted our Sarcoma Alliance community from a health perspective, but also financially for many families. We've seen a significant increase in the amount of Assistance Fund applications we are receiving, so if you're in the position to help, please consider donating directly to the Assistance Fund today.
Gifts to this fund are granted directly to individuals to reimburse expenses related to travel, costs of the evaluation, and related expenses for second opinion consultations.
