FALL 2021 NEWSLETTER

Sarcoma News Corner

In September a sarcoma survivor made history as part of the first all-civilian orbital space flight! Hayley Arceneaux is an osteosarcoma survivor who became the youngest American, first cancer survivor, and first person with a prosthesis in space. She was treated as a 10-year-old at St. Jude, and now works there as a physician assistant. Thank you, Hayley, for representing the sarcoma community in so many amazing ways.

Researchers conducted interviews with a number of sarcoma surgeons throughout the world to find out how the COVID-19 pandemic changed decisions to treat sarcoma patients. Balancing protecting the patient from disease exposure while treating the cancer resulted in some unique treatment changes.

The FDA has given a targeted treatment, Vactosertib, Orphan Drug status for osteosarcoma. This status provides incentives for pharmaceutical companies to develop treatments for rare diseases

A new type of radiotherapy is a directional device, CivaSheet, that is implanted during surgery and is shaped to deliver radiation to the tumor bed and margins, while avoiding adjacent tissues. Six retroperitoneal sarcoma patients were treated with this device, and showed no local recurrences and no toxicity during the study.

A small clinical trial of two immunotherapy drugs, ipilimumab and nivolumab, showed a response in 4 of 16 patients with angiosarcoma. Three of the responders had scalp or face tumors.

Model from Northern Ireland and synovial sarcoma survivor Bernadette Hagans is the subject of an upcoming BBC NI documentary, The Girl with the Colourful Leg, which includes a video she took just after her diagnosis. Bernadette doesn't disguise her leg; instead she wears brightly colored prostheses. Her work follows the legacy of models before her, including Mama Cax, who worked to challenge fashion industry beauty standards and ideas of what people with disabilities should be or look like. 

A recent study of cancers in adolescents and young adults (AYA) showed that for bone and soft tissue sarcomas, survival significantly increased from 1975 to 1989 but has not improved since then. In addition, incidence of sarcomas has increased since 1975. New and better treatments are clearly needed.

The Dana-Farber Cancer Institute has received a large grant to establish a liposarcoma research initiative. Sarcoma expert and member of the Sarcoma Alliance Medical Advisory Board, Dr. George Demetri, will lead the initiative. Congratulations and thanks for all you do, Dr. Demetri.

Researchers in the UK are doing a "deep dive" into rhabdomyosarcoma, looking at tumor samples on a cell-by-cell basis to see what genes are expressed, with a goal of finding treatment targets. They have already found that some genes normally expressed only before birth are still expressed in the tumors. These genes could be potential targets for treatments that would not affect normal cells.

Sarcoma Exchange

We are so grateful to have had the opportunity to learn and connect with you at the 4th Annual Sarcoma Exchange, which took place earlier this month. Despite the virtual nature of this event, we had a record-high number of attendees and as talented a lineup of presenters as ever. Thank you to all of the speakers and breakout session facilitators who shared their time, knowledge, and expertise with us. We learned so much!

We'd also like to thank the planning committee and our amazing event planners, Charles and Joseph. You can learn more about them and their services at Synaxis Meetings & Events.

If you missed out on the event, no worries. We've created a YouTube playlist with all of the recorded sessions from this year's event for you to view whenever and wherever you'd like.

Special thanks to all of the Sarcoma Exchange 2021 sponsors, whose gifts and support made this event possible.

15th Annual Putts for Ped

This past weekend, people from all over the East Coast gathered at Rancocas Golf Club in Willingboro, New Jersey for the 15th Annual Putts for Ped golf outing. Sarcoma Alliance Board President Jennifer Nellany established this event to honor her late husband, Michael John Pedrick, who was diagnosed with synovial sarcoma. Over the past fifteen years, the event has raised over $110,000 for the Sarcoma Alliance and our programs to support the sarcoma community. Thank you to everyone who came out for the event or particpated from afar by donating. We appreciate your support. 

Wendy Walk

Nobody should face sarcoma alone.

While we're on the subject of events, did you participate in this year's Wendy Walk? On September 19th, people around the U.S. walked in their communities to raise awareness and support for everyone facing sarcoma.

This year, we had the opportunity to create our very own team for the event. From Miami to Los Angeles, Team Sarcoma Alliance members raised funds, awareness, and moved for a cause that matters to all of us. We'd like to give a big shout out to our incredible board members who donated and participated—we feel so lucky to have y'all on our team. Donations raised by our team members will go directly towards Hand in Hand: The Suzanne Renée Leider Assistance Fund to provide sarcoma patients with grants to seek second opinions from experts. If you'd like to donate, there's still time!

Sarcoma Wellness Blog

Your space for sarcoma wellness content

Our incredible volunteer and Board Member Courtney Hill, MSN PMHNP-BS has led the way in starting our Sarcoma Wellness Blog! As a Psychiatric Mental Health Nurse Practitioner and osteosarcoma survivor, Courtney currently writes Mental Health Monday posts. Cancer not only impacts our bodies but also our minds and emotional health. Unfortunately, this isn't something that's always talked about, recognized, or treated. 

Through this blog, we aim to share more conversations about mental health, wellness, and cancer. For now, we'll be talking about a variety of topics related to mental health including  symptoms, family wellness, and skills for easing anxiety, fear, and pain. If you have ideas for topics related to mental health or wellness in general, please get in touch to let us know by messaging us at info@sarcomaalliance.org. 

You are not alone in your diagnosis and wellness. 

Give & Receive Support 

Talk to someone who understands. 

Everything that we do at the Sarcoma Alliance is centered around the belief that nobody should face sarcoma alone. For fifteen years, we hosted a peer-to-peer program that provided people with the opportunity to connect with someone who faced a similar sarcoma diagnosis and journey. 

Last year, we made the decision to transition our program through a partnership with Imerman Angels—a wonderful organization that focuses solely on one-to-one support. Imerman Angels has since expanded their programming to include people facing sarcoma no matter where they are in the world or their journey. Those who wish to give or receive support undergo a personalized matching process and are paired up with someone who has a similar diagnosis and experiences.

Collectively, more than 2,000 people in the sarcoma community have signed up to give and receive support. Imerman Angels does their best to match people with similar sarcoma subtypes and experiences. Currently, there are a few people who are still waiting to receive mentors. Check out their information below to see if you might be the match they're looking for. 

Sarcoma caregivers of any sarcoma subtype.

Survivors of: 

• Kaposi Sarcoma who are also living with HIV
• Leiomyosarcoma Uterine Cancer  
• Stage 4 Leiomyosarcoma  
• Leiomyosarcoma who are Spanish speaking
• Pleomorphic Rhabdomyosarcoma  

If giving support to a fellow sarcoma community membor resonates with you, why not consider signing up as a mentor with Imerman Angels today?  

Fall FUNdraising

'Tis the season for fall, friends, and, dare we say, fundraising.

Though our sweet summer days have been waning, there are a lot of fun ways to stay involved with the Sarcoma Alliance this fall. Here are just a few:

• Pop open a bottle of ONEHOPE Wine for a cozy night in or dinner with loved ones. Not only is the wine delicious, but for every purchase you make 10%—along with a match from the Pajak family—is donated to the Sarcoma Alliance. If wine's not your thing, consider giving a bottle as a gift or hanging up our flyer around your community. 

• Create a Facebook Fundraiser for any occasion you've got coming up this fall. Hosting a get together with loved ones? Ask them to skip bringing an extra dessert and donate to your fundraiser instead. Have a fall birthday? Leverage your day to ask your friends and family to gift donations to the Sarcoma Alliance. Is there someone special you want to honor? Start a fundraiser on Facebook and ask people to donate on their behalf. 

• Gather friends and family around the table for a home-cooked meal with recipes from the Sage Cuisine Cookbook. A labor of love from our founder, Suzanne Leider, this cookbook features recipes she collected from family, friends, and colleagues. Sage Cuisine blossomed into a collaborative and multicultural effort that not only raised money for cancer patients but also brought people together. In Suzanne's words, "It is my firm belief that sharing a wonderful meal with loved ones is as important as any other treatment in the process of healing." 

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