The Chordoma Foundation hosted their biennial International Chordoma Research Workshop July 16^th through 17^th. This year, the workshop was entirely virtual with speakers presenting from their homes, offices, and even their research labs. Researchers, physicians, and advocacy partners joined from around the world to collaborate and share knowledge with the goal of advancing chordoma research and treatment. The first day of the workshop focused on clinical research on chordoma treatment and the second day was dedicated to advances in basic research. A special breakout session hosted by Drs. Mary Frances Wedekind and Brigitte Widemann from our MyPART Network on July 16^th focused on a proposed pediatric chordoma study and gathered valuable feedback from workshop participants. Earlier in the day, they provided an overview of the MyPART Natural History Study of Rare Solid Tumors and the annual Chordoma Clinic, which is held at the NIH in collaboration with the Chordoma Foundation. View the list of speakers and presentations here.

Now more than ever, it’s important to be able to connect virtually. Did you know that the MyPART Network provides updates through the NCI Pediatric Oncology Branch Twitter account? Follow us at @NCI_CCR_PedOnc for news about our research projects, clinical trials, staff, advocacy partners, and more!

To connect with the rest of our network, follow our MyPART advocacy partners below:

• Angiosarcoma Awareness, Inc: @EndAngiosarcoma
• Appendix Cancer Pseudomyxoma Peritonei (ACPMP) Research Foundation: @acpmpresearch
• The Chordoma Foundation: @ChordomaFDN
• Cure Alveolar Soft Part Sarcoma International (iCureASPS)
• Desmoid Tumor Research Foundation: @DTRFoundation
• The EHE Foundation: @fightEHE
• Fibrolamellar Cancer Foundation: @FibroFoundation
• Leiomyosarcoma Support & Direct Research Foundation: @2LMSdr  
• Life Raft Group: @Liferaftgroup
• National Leiomyosarcoma Foundation: @NationalLMSF
• Sara’s Cure: @cure_sara
• Sarcoma Alliance for Research through Collaboration (SARC): @SARCtrials
• Sarcoma Foundation for America: @CureSarcoma
• Thyroid Cancer Survivors Association, Inc. (ThyCa): @ThyCaInc

Dr. Wedekind Malone is a pediatric oncologist and soon-to-be Principal Investigator for the Natural History Study of Rare Solid Tumors. She grew up in Tennessee and loves the Great Smokey Mountains and the Tennessee Volunteers! Her work focuses on developing clinical trials and new treatments for patients with rare solid tumors for which no treatment is currently available. When describing her work, Dr. Wedekind Malone says she has “a passion for developing new and innovative therapies for patients with sarcomas and rare tumors, especially in the pediatric, adolescent, and young adult population.”

She came to the NCI after completing her fellowship in sarcoma at Nationwide Children’s Hospital and Ohio State University. She notes, “[I’m] married to an Ohio State Buckeye fan, so football season in our house is very active!” She joined the MyPART team after she sent a “cold email” to the Pediatric Oncology Branch Chief, Dr. Brigitte Widemann. She explains, “I sent [an] email to Dr. Widemann stating where I had trained, my accomplishments, discussed my passion for sarcoma and rare tumors, and that I would love to work at the NCI.  After some emails, phone calls, and an interview, I got my DREAM JOB!”

She is excited to be part of the MyPART team, she explains, “[because] I knew that I wanted to work on clinical trials and have this aspect be a major part of my career, [and] naturally, I knew NCI would be a dream place.” In addition to developing novel clinical trials for patients, she provides advice for patients with sarcoma and other rare solid tumors. Part of this advice is to make sure patients and their families don’t feel alone. She says, “I try to make a difference in everyone’s life, even it is just a smile or having a heartfelt discussion to let patients and families know that they are not alone in this journey and that someone is always on their side.”

When asked about her favorite aspect of MyPART, she exclaims, “The patients and their families! They are the true inspiration for all things I do.  Each one leaves a footprint on my heart and are never forgotten.  I use the passion and energy from our patients and their families to propel me to continue to try and make a difference.”

Learn more about our MyPART team here.

ThyCa: Thyroid Cancer Survivors’ Association, Inc., or ThyCa, is an advocacy organization dedicated to connecting thyroid cancer patients with healthcare professionals, educational resources, and support. Their website, managed by thyroid cancer survivors, provides medically reviewed information on all types of thyroid cancer and treatment, as well as upcoming ThyCa events, and about local support groups. Materials on the website are also available in several languages for thyroid cancer patients around the world. There is also a section on pediatric thyroid cancer. Each year, ThyCa sponsors Thyroid Cancer Awareness Month throughout the month of September. This year, the organization celebrates 25 years of providing support for thyroid cancer patients. ThyCa officially joined our MyPART Network in February. Visit their website and follow them on Twitter at @ThyCaInc to learn more.

Next Advocacy Spotlight: Angiosarcoma Awareness, Inc.