SUMMER 2021 NEWSLETTER
Sarcoma News Corner
The first patient has been dosed in a clinical trial of Annamycin for sarcoma lung mets. This drug appears to have no heart toxicity, unlike other anthracycline drugs, and is much better at targeting lung mets. The FDA has given it Fast Track Status, which speeds development of drugs with great potential.
An oncologist at MD Anderson, Vinod Ravi, whose brother had pediatric sarcoma has teamed up with the Broad Institute to look for targets for new treatment of rare cancers. What a great thing to do!
An early clinical trial of a combination of the targeted treatment olaparib with the chemo agent temozolomide resulted in more responses than other treatments for difficult-to-treat advanced uterine leiomyosarcoma. A larger clinical trial will be coming soon.
Liquid biopsies can be a non-invasive way to diagnose cancer and identify how well treatment is working, but pediatric sarcomas often don't have many distinguishing mutations. Now, researchers have found that cell-free DNA (cfDNA) in blood can be used to detect the presence of pediatric sarcomas. This method might also be used to develop precision treatments.
Researchers developed a gel containing immune-boosting compounds and cancer-fighting immune cells that resulted in shrinkage of tumors in mice. The treatment not only affected the tumor where the gel was applied, it attacked metastatic sites as well. Amazing!
Dogs and cats develop sarcomas more frequently than people, and more and more research is being done on them, which helps humans too. Researchers recently identified two genes associated with histocytic sarcoma in some breeds of dogs. One of the genes, CFA5, was also associated with hemangiosarcoma, which is almost identical to angiosarcoma. Finding these can result in screening tumors for these genetic variants and development of targeted treatments.
What's fresh, new, and designed especially for you?
If you're looking at the photo above and wondering if it's got something to do with that, you'd be correct. Now click the photo for a surprise!
Go on, click away. This newsletter will still be here when you navigate back.
...
Thanks for humoring us. Now that you've discovered the surprise for yourself, we're pleased to officially announce that the Sarcoma Alliance has a new website! Our organization exists to help guide and support people along their journeys with sarcoma. Crafted with care, this website aims to do just that.
We’d like to give a huge thank you to our incredible developer and designer, Sharon Roberts, for listening to us and bringing our ideas to life. Sharon’s thoughtful approach and attention to detail are apparent throughout the site and we couldn’t be happier with this collaboration. You can learn more about her work at Endeavor Marketing Communications.
Thank you to all of the people and organizations who also invested their time, energy, and financial support into making this project a reality:
Our Board of Directors | Special thanks to Susan S. Brown and Kevin Plottner
Courtney Hill | Volunteer
Epizyme | Financial Sponsor
Staff | Alyssa O’Driscoll and Kalyse Engebretson
Together, we created a fresh, friendly space for people to connect and find the sarcoma resources they seek. We hope you enjoy the new website!
Join us for Sarcoma Awareness Month
Nobody should face sarcoma alone.
Help us make sure that doesn't happen.
July is Sarcoma Awareness Month: thirty-one days dedicated to shedding light on the rare 1% of cancers. When you join us in raising sarcoma awareness, you play an essential role in educating others and connecting them to resources and support. Here are a few ways you can get involved this month:
Donate - Add a donation sticker to your Instagram Story, create a Facebook Fundraiser, or donate on our website. You can also browse our donation page to learn about other creative ways to give.
Frame - Put sarcoma front and center by adding our frames to your Facebook profile picture. Just go to your profile picture, click on "Add Frame," search for the Sarcoma Alliance, and select which frame you'd like to use.
Share - Repost our social media content or create your own. How has sarcoma affected your life? What have you learned? Why do you think it's important to raise awareness? Are there sarcoma groups or resources in your community? Share far and wide. You never know who might benefit from your posts.
Spread Sunflowers - Across the globe, the sunflower is symbol of sarcoma awareness and is used to communicate that even on the darkest of days, there is always hope for a brighter future. In addition to incorporating sunflowers into your activities this month, share a post featuring a person who has been your "sunflower" throughout your journey. Use the hashtags below and be sure to tag us!
#sarcomasunflowers #showusyoursunflowers #whoisyoursunflower
Want to learn about other ways you can raise awareness this July and beyond? Visit our Raise Awareness page to browse ideas and get connected to an activity that suits you.
Planning to share stories and statistics on social media this month? Don't forget to tag us so we can see!
Our Ambassador Brandi Benson is hard at work raising awareness and sharing her story of surviving Ewing's sarcoma. Check out her recent feature on an episode of the Pretty Wellness Happiness Through Hardship podcast and keep an eye out for some of her upcoming speaking engagements including an Instagram Live interview with Pretty Wellness, an interview with Connect Network, and an episode on But Seriously: The Cancer Podcast.
You can also follow Brandi on Instagram to see her content for Sarcoma Awareness Month, including lovely photos of her sporting Sarcoma Alliance merchandise like the one above. Visit our online shop to get your gear.
Join Brandi's mission to raise sarcoma awareness.
Follow her activities via the buttons below.
Share Wine & Give Hope
Looking for a fun way to give back this Sarcoma Awareness Month? Look no further. We've partnered with ONEHOPE Wine and their incredible entrepreneur, Jessica Pajak, to bring you a special way to support the Sarcoma Alliance this summer and beyond.
What does this have to do with sarcoma?
You might be asking yourself how we partnered with Jessica Pajak and ONEHOPE Wine, and more importantly, why.
A few months ago, our Ambassador, Brandi Benson, received a message from Jessica Pajak of ONEHOPE Wine inquiring about the Sarcoma Alliance and how to get involved. We set up a meeting and learned that ONEHOPE Wine is a social enterprise that raises awareness and funds for charitable causes with every bottle of wine they sell. We also learned that Jessica's daughter, Emma, was diagnosed with Ewing's sarcoma at just six weeks old.
After one year and more medical procedures than many have in a lifetime, Emma is now a sarcoma survivor. Grateful for all of the support they received throughout their journey facing sarcoma, Jessica and her family are now on a mission to change the world one bottle at a time. Watch the video below to learn more:
Register for the Sarcoma Exchange
Registration for this year's Sarcoma Exchange event is officially open. Join us September 10-12th in Los Angeles, California (or virtually) for a weekend of learning and connection. This event will include breakout sessions, a panel on pediatric sarcoma, presentations from renowned sarcoma experts, and plenty of time to exchange with others. Click the photo above to register or learn more. We hope to see you there!
Tune in to learn about sarcoma
Let’s face it, learning about sarcoma can be tough. There is a lot of information out there and sometimes it feels like you have to have a medical degree to understand any of it. If browsing websites and scrolling through research papers isn’t your cup of tea—or even if it is—give Sarcoma Insight a listen.
Hosted by Dr. Elyse Brinkmann and Dr. Izuchukwu Ibe, Sarcoma Insight is an engaging and informative podcast that aims to make sarcoma education more accessible for patients and their loved ones. Each episode tackles a different topic, discussing the latest related research and introducing you to other experts in the field. With Sarcoma Insight, you can learn more about sarcoma on your commute, in waiting rooms, running errands, lounging in your favorite spot, or really anywhere. No matter where you are in the world, when, or how you listen, Dr. Ibe and Dr. Brinkmann are here to guide you in your sarcoma learning and shed light on topics that may be useful to you on your journey.
We’re so thrilled about this initiative and are grateful to Dr. Ibe and Dr. Brinkmann for creating this wonderful resource for sarcoma patients and their loved ones. Tune in later this month to hear their discussion with sarcoma surgeon and founder of Sarcoma Strong, Dr. Matthew R. DiCaprio, as well as a highlight of the Sarcoma Alliance!
Sarcoma Insight is available on Apple Podcasts, Listen Notes, Soundcloud, and Spotify. You can also follow them on Instagram.
Thanks for being our sunflowers
Thank you for reading our newsletter and being a part of the Sarcoma Alliance community. Whether you've been with us for a long time or are brand new, your participation strengthens our mission to provide people with the resources they need to navigate their sarcoma journey. Like sunflowers, you all bring light to this sarcoma space and give us hope. We hope you have a wonderful summer and Sarcoma Awareness Month.
Follow us on social media for more sarcoma updates!
