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July is Sarcoma Awareness Month, an international campaign in which the sarcoma community unites to raise awareness of the deadly disease and show support for those affected by it.  Sarcoma is a relatively rare group of cancers in which malignant cells form in either the bones or the soft tissue of the body.

Spreading awareness of sarcoma symptoms and risk factors is just one goal of Sarcoma Awareness Month.  Organizations like the Sarcoma Foundation of America and the Sarcoma Patient Advocacy Global Network coordinate numerous social media initiatives, fundraising efforts, and advocacy campaigns throughout the month of July to bring attention to sarcoma and raise funds for cancer research.

This year, several organizations are spearheading events both in the United States and worldwide to commemorate Sarcoma Awareness Month.  Here’s a few of those organizations and what they’re up to this month:

Sarcoma Patient Advocacy Global Network

The Sarcoma Patient Advocacy Global Network (SPAGN) launched an international campaign based around a simple theme: “Know. Act. Advocate.”  The idea was to get people to know what “normal” looks like with regards to their bodies, to act on any symptoms as soon as they appear, and to advocate for answers within the healthcare system.

SPAGN encouraged everyone to share campaign materials within their community and online, to engage medical professionals and encourage them to take action, and to join or host local events such as webinars, community walks, and awareness days.  They also encouraged those who have dealt with sarcoma, whether in their own health journey or through that of a family member, to share their stories.  Sometimes, the most powerful form of advocacy is through storytelling, which is why hearing one person’s journey with sarcoma can be enough to spur countless others into action.

Sarcoma Foundation of America

The Sarcoma Foundation of America (SFA) has led the charge in funding and advancing research into sarcoma treatment for the last 24 years.  This month, the organization hosted several events meant to bring attention online and in person to this life-threatening disease.  On July 9th, they hosted Wear Yellow Wednesday, in which members of the sarcoma community posted photos of themselves and their loved ones wearing yellow, the official color of Sarcoma Awareness Month.

Between July 17th and 19th, they went to Washington, DC, for a weekend of advocacy and learning.  Members met with elected officials to share personal stories and advocate for increased research funding and improved access to care for patients with sarcoma.  They also held an education day to learn about the drug development process and how advocacy can expand treatment for sarcoma patients.  On the last day, they had the Race to Cure Sarcoma at the Lincoln Memorial, which helped raise funds for sarcoma research.

jscreen

Companies like jscreen, a national non-profit public health initiative dedicated to preventing genetic diseases and cancer, are also doing their part to spread awareness this month by promoting the benefits of genetic screening.  Genetic screening can identify certain genetic conditions or inherited disorders that are associated with a higher risk of sarcoma, giving people the knowledge they need to take proactive steps to catch the disease in its infancy.  In addition to having a family history of sarcoma, mutations in the TP53 and APC genes can make one more likely to develop sarcoma, making genetic testing the first step in determining one’s risk.

jscreen offers individuals the opportunity to understand their genetic profile through at-home genetic testing kits.  By visiting jscreen.org, individuals can order a Hereditary Cancer Test or Reproductive Carrier Screen to determine whether they have any genetic mutations associated with a higher risk of cancer.  After mailing the kit back, they’ll receive a virtual session with a personalized genetic counselor, who will explain the results to them and help them decide how to proceed.

Take Action Today

Although the next Sarcoma Awareness Month is nearly a year away, it’s never too late to take action and advocate for those living with this life-threatening disease.  By understanding the symptoms and taking proactive steps like genetic testing, one can avoid delays in receiving the right care.  And by advocating for sarcoma awareness, research, and funding, one can do their part to stand with the sarcoma community all year long.