Sarcoma Alliance Networking Group
2021-12-11 11:00 - 13:00 (America/Los_Angeles) | Hyatt Regency LAX, 6225 W Century Blvd, Los Angeles, CA, 90045, United States
Sarcoma Alliance Networking Group

When: 2nd Saturday of the month, 11am-1pm Pacific Time
Where: Zoom
Who: Residents of California or Florida
Do you or a loved one have a diagnosis of sarcoma? Are you feeling alone with this rare type of cancer? Would you like to meet other people facing similar issues? There are strength in numbers. Join the Sarcoma Alliance’s networking group, run by the Cancer Support Community of Redondo Beach California and facilitated by Jill Gray, MA, LMFT! Sessions are free of charge and all are welcome. This free drop-in group is for newly diagnosed sarcoma patients, those in treatment, survivors, caregivers, and family members. To join this online sarcoma group, contact info@cscrb.org.

Learn More!
Contact info@cscrb.org to join or learn more about this group.

Sip to Support the Sarcoma Alliance
2022-06-27 - 2022-07-31 | Hyatt Regency LAX, 6225 W Century Blvd, Los Angeles, CA, 90045, United States
Share Wine. Give Hope.
When: June 27th – July 31st 2022
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.

Sip soundly knowing each glass supports the sarcoma community.
When you buy ONEHOPE Wine, 10% of your purchase—plus a match from the Pajak family—will go to the Sarcoma Alliance.

About the Pajak Family

They’re changing the world one bottle at a time. Each year, 17,000 people in the U.S. are diagnosed with sarcoma. At just six weeks old, Emma Pajak became one of them. After one year and more medical procedures than many have in a lifetime, Emma is now a Ewing sarcoma survivor. Grateful for all of the support they received throughout their journey, Emma’s family sells wine and raises funds to give back. They’re generously matching 10% of each purchase of ONEHOPE Wine you make to support other people facing sarcoma.

Spread the word!
It’s easy to share this fundraising event with your community using our lovely one-page flyer or short and sweet graphic.

Sarcoma Exchange 2022
2022-07-22 - 2022-07-24 | Hyatt Regency Los Angeles International Airport, 6225 W Century Blvd., Los Angeles, CA, 90045, United States
Learn about the Sarcoma Exchange 2022!

When: July 22-24, 2022
Where: Hyatt Regency LAX, Los Angeles, CA and virtually
The Sarcoma Exchange is an educational event dedicated to sarcoma patients and the people who support them. This special meeting is designed for sarcoma patients, survivors, co-survivors, caregivers, patient advocates, and medical specialists to connect with one another and to exchange information about current therapies and available resources. Some of the topics covered in this year’s event will include immunotherapy, integrative medicine, and mental health. Click here to view the schedule and learn more.

Our community’s health and safety are critical to us. Given the global COVID-19 pandemic we have made the decision to require full vaccination for those who want to attend the 2022 Sarcoma Exchange in person, with limited exceptions. To protect everyone’s health and well-being, those who are not fully vaccinated are encouraged to participate virtually. We will also abide by Los Angeles Country’s social distancing and masking mandates if any are in effect at that time. Please prepare accordingly. We will continue to monitor the status of the pandemic and will notify you should we have to make any additional event adjustments. Thank you for your understanding.

Learn More
Review the Event AgendaWe are proud to have a lineup of some amazing speakers for this year’s event. Click the link above to see who will be speaking and the topics they’ll discuss.

Watch Last Year’s EventCurious about topics that have previously been covered in the Sarcoma Exchange? Watch our YouTube playlist with recordings from last year’s event.

Spread the word!
It’s easy to share this event with your community with our printable event flyer.
Special thanks to our 2022 Sarcoma Exchange Sponsors:
Click the edit button to add your testimonial. If you are interested in sponsoring the Sarcoma Exchange, please contact Kalyse Engebretson at kengebretson@sarcomaalliance.org.

13th Annual Wendy Walk
2022-09-18 10:00 - 13:00 (America/Los_Angeles) | Barnard Linear Way Park, 2440 Barnard Way, Santa Monica, CA, 90405, United States
Join us for this year’s Wendy Walk

When: September 18, 2022
Where: Barnard Way Linear Park, Santa Monica and Virtually
Move with us at this year’s 13th Annual Wendy Walk! Hosted by our partner, Wendy Walk, this event is dedicated to raising funds to support sarcoma patients and research. This year’s Wendy Walk will take place both in Santa Monica, California and virtually. If you choose to walk with us in spirit, you can also choose your own course, start time, and walking buddies.
We are honored to have our very own fundraising team for this year’s Wendy Walk. Join Team Sarcoma Alliance in Santa Monica or from anywhere and help us to raise funds to support sarcoma patients seeking second opinions consultations with sarcoma experts.

Support Team Sarcoma Alliance!
Visit our event page for more information about the walk and registration.

More About Wendy Walk:
“The first time we heard the word ‘sarcoma’ was when our mom, Wendy, was diagnosed with liposarcoma in 2008. We couldn’t wrap our heads around the severe lack of viable treatment options and research funds for this rare cancer. We lost our mom in 2013, but not before she was able to participate in a new annual tradition, Wendy Walk. We’ve raised over four million dollars for sarcoma research and continuously strive to ensure nobody has to face sarcoma alone.”
– Ali, Matt, & Jackie Landes

16th Annual Putts for Ped
2022-10-07 | Rancocas Golf Club, 12 Club Ridge Lane, Willingboro, NJ, 08046, United States
Join us for a Best Ball Scramble Golf Outing in memory of Michael John Pedrick.
The 16th Annual Putts for Ped golf fundraiser will be hosted by Sarcoma Alliance Board President Jennifer Nellany.
Location: Rancocas Golf Club in Willingboro, New Jersey When: Friday, October 7, 2022. Registration is 11:30 am-12:30 pm and shotgun starts at 1 pm.
For information about Rancocas Golf Club, visit www.rancocasgc.com.For more information about the outing, for sponsorship details, or to register, please email Jennifer Nellany at jnellany@yahoo.com.
Putts for Ped 2022 Flyer

Sully's Run
2022-10-22 08:00 - 14:00 (America/New_York) | Riverbend Park, 9060 West Indiantown Road, Jupiter, FL, 33478, United States
Join Sully’s Run
A 5K race in honor of Lauren Sullivan
When: October 22, 2022
Where: Riverbend Park, West Indiantown Road, Jupiter, FL

Held in memory of Lauren Sullivan, who died of Follicular Dendritic Cell Sarcoma, Sully’s Run is a beautiful 5-kilometer race course in Riverbend Park in Jupiter, Florida. The race event will also include live music, food trucks, live raffles, and much more. Sully’s Run is brought to you by the Pearl Mae Foundation, for which Lauren Sullivan was the founding Executive Director. Join the event as a participant or come out to show your support and cheer everyone on!

Race proceeds benefit the Sarcoma Alliance and the Pearl Mae Foundation.
Visit the following website for more information about the race and registration.

The Pearl Mae Foundation focuses on helping Senior Citizens in Palm Beach County, Florida.

Sarcoma Awareness Month - July 2023
2023-07-01 - 2023-07-31
July is Sarcoma Awareness Month. Follow our Facebook and Instagram for inspiring stories, sarcoma facts, and ways to spread awareness and support for people with sarcoma!

Sarcoma Exchange 2023
2023-10-14 - 2023-10-15
Join us for our virtual Sarcoma Exchange on October 14 & 15 to get the latest on sarcoma research, connect with others affected by sarcoma, and raise awareness. Please register for the event here. We look forward to seeing you!

Sully's Halloween Run 5K - Jupiter, Florida
2023-10-21 08:00 - 14:00 (America/New_York) | Riverbend Park, 9060 West Indiantown Road, Jupiter, FL, 33478, United States
Join the Halloween fun and help raise awareness and funds to support people with sarcoma!
You can register here!

LMS Conference London 2023
2023-10-28 08:30 - 16:00 (Europe/London) | Royal Marsden Conference Centre, Stewart's Grove, London, SW3 6JJ, United Kingdom

Giving Tuesday 2023
2023-11-28
Support the Sarcoma Community this November!

When: November 28, 2023
It’s that time of year again and Giving Tuesday is just around the corner. This day of global giving encourages people to join together to support the causes they care about. There are a number of ways you can support the Sarcoma Alliance on November 30th and beyond—donate, volunteer, share sarcoma information on your social media, drop off Sarcoma Alliance brochures at your local cancer center, or check in on your loved ones facing sarcoma. Regardless of how you choose to engage, you’ll play a part in ensuring that nobody faces sarcoma alone.
Keep an eye on our Facebook, Instagram, and Twitter for more opportunities to get involved.

Give the gift of connection and support.
When you give to the Sarcoma Alliance this Giving Tuesday, you help provide connection, information, and support to people navigating their sarcoma journeys.

More About Giving Tuesday:
Giving Tuesday is a global day of giving. The day presents an opportunity for people to come together to thank, help, give, show kindness, and share what they have with individuals in their communities and causes they care about. This year’s global giving day will take place on Tuesday, November 28, 2023.

Sarcoma Exchange 2024
2024-10-05 - 2024-10-06
Join us for our seventh annual Sarcoma Exchange!
October 5: 9:00 a.m. – 2:00 p.m. PDT
October 6: 9:00 a.m. – 2:15 p.m. PDT
Click here to Register
This event is specifically crafted for sarcoma patients and their caregivers, offering a unique opportunity to hear directly from some of the top sarcoma specialists in the United States.
The agenda is designed to benefit both newly diagnosed and veteran patients, covering a range of crucial topics. Attendees will gain valuable insights on the importance of second opinions, the role of the immune system and immunotherapy, the benefits of exercise, and strategies for maintaining mental health.
Don’t miss this chance to connect, learn, and empower yourself with knowledge from leading experts.
Click here to see the agenda and confirmed speakers (subject to change)

Sully's Halloween Run 5k
2024-10-26 07:30 - 11:00 (America/New_York) | Riverbend Park, 9060 West Indiantown Road, Jupiter, FL, 33478, United States
Sully’s Run is in honor of Lauren Sullivan, the founding Executive Director of the Pearl Mae Foundation who died of a rare cancer called Follicular Dendritic Cell Sarcoma. Sully’s Halloween 5K Run will not only support the Pearl Mae Foundation’s mission of helping senior citizens in Palm Beach County, Martin County and beyond, but it will also raise money on behalf of the Sarcoma Alliance.

Free Webinar! 🌻 Navigating Desmoid Tumors - Education & Support: Empowering Through Knowledge & Community
2024-11-21 09:00 - 09:45 (America/Los_Angeles)
Join us for a free webinar sponsored by the Sarcoma Alliance and SpringWorks Therapeutics!
REGISTER HERE
Navigating Desmoid Tumors – Education & Support: Empowering Through Knowledge and Community

Why the Patient Perspective is Crucial:
Understanding the patient’s journey with desmoid tumors is essential for improving outcomes, enhancing caregiver support, and advancing healthcare strategies. Educational webinars focusing on patient, healthcare professional, and caregiver experiences provide invaluable insights, fostering collaboration to tackle this rare and challenging disease. This holistic understanding aims to deliver better care, more effective treatments, and, ultimately, a higher quality of life for those affected by desmoid tumors.
Importance for Patients:
Empowerment Through Knowledge: Understanding their journey empowers patients to take control of their health. Knowledge about symptoms, diagnosis, and treatment options helps them make informed decisions.
Emotional Support and Validation: Sharing patient stories provides emotional support and validation. Knowing others have faced similar challenges reduces isolation and anxiety.
Improved Communication with Healthcare Providers: Well-informed patients can communicate effectively with their healthcare team, asking relevant questions and actively participating in their treatment plan.
Importance for Healthcare Professionals:
Enhanced Patient Care: Understanding patient perspectives enables healthcare professionals to provide empathetic and personalized care. This understanding helps tailor treatment plans to meet both medical and emotional needs.
Identification of Gaps in Care: Listening to patient experiences helps identify gaps in care and areas needing improvement. This can lead to advancements in diagnostics, more effective treatments, and enhanced support services for desmoid tumor patients.
What You Will Gain:
Attendees will come away with:

Knowledge: A comprehensive understanding of desmoid tumors, including symptoms, treatment options, and patient perspectives.
Support: Emotional support and connections with others in the desmoid community.
Communication Skills: Strategies for effective communication with healthcare providers.
Professional Insights: Healthcare professionals will gain insights to enhance patient care and identify areas for improvement in treatment and support services.

We HOPE you can join us!

Webinar: Navigating Desmoid Tumors - Long-Term Follow-Up & Survivorship
2024-12-20 09:00 - 09:45 (America/Los_Angeles)

Inaugural 2025 Synovial Sarcoma Virtual Conference
2025-03-01 11:30 - 13:00 (America/Los_Angeles)

2025 Epithelioid Hemangioendothelioma (EHE) 360 Global Patient Conference
2025-04-10 10:00 - 2025-04-11 13:00 (America/New_York)
The EHE 360 Global Patient Conference is the largest gathering of EHE patients, clinicians, and researchers, coming together to connect, explore, and learn. This virtual annual event empowers the EHE community with a deeper understanding of the disease. Participants will hear from leading researchers about efforts to identify effective therapies, gain insight into the latest research and what that means for clinical care, and have the opportunity to engage in live Q&A sessions with expert clinicians.
Last year, people from 25 countries united to become a stronger, empowered community working together to improve the lives of people diagnosed with EHE.
REGISTER HERE

8th Annual Sarcoma Exchange
2025-07-20 09:00 - 12:30 (America/Los_Angeles)
Check out the agenda for this year’s program!
Sarcoma Exchange 2025 – Agenda
