Sarcoma Alliance

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
