Childhood Cancer Awareness Month is recognized every September since 2012 to raise awareness about the children and teens experiencing cancer. Each year, over 11,000 children ages 0-14 are diagnosed with cancer in the US. Childhood Cancer Awareness Month shines a spotlight on childhood cancer to raise awareness, educate the public, and advocate for research and treatment of childhood cancer.

This year, we plan to participate in a Facebook Watch Party on childhood cancer issues on September 23^rd at 3:00 pm EDT. Dr. Lori Wiener will provide answers to audience questions live on the NCI Facebook page. Watch this video of Dr. Wiener from last year’s Childhood Cancer Awareness Month. She answered questions and provided support for families alongside MyPART doctor, Dr. John Glod, and in partnership with The Children’s Inn at NIH.

Follow us on Twitter at @NCI_CCR_POB to learn about our staff and trainees who honor Childhood Cancer Awareness Month every day and work to advance childhood cancer research. We will be featuring our staff, research, and current clinical trials throughout September to highlight our work on childhood cancer and share resources available to patients and families.

Visit our MyPART website to find resources for children, teens, and young adults coping with cancer.

Dr. Margarita Raygada is the genetic counselor for MyPART. She came to the NCI after spending many years at the National Institute of Child Health and Human Development (NICHD) working with two of her mentors, Drs. Owen Rennert and Constantine Stratakis, who were both Scientific Directors of NICHD.  She was asked to work with patients and families participating in the annual GIST Clinic, and was introduced to Dr. Brigitte Widemann, co-leader of MyPART. After working with Dr. Widemann and the Pediatric Oncology Branch team on the GIST Clinic, she joined MyPART.

Dr. Raygada’s passion is cancer genetics and she is particularly interested in the genetics of rare tumors. She studies the changes in a patient’s DNA that can lead to cancer and connects these changes to other physical characteristics of patients. Working with her mentors at NICHD, she gained ample experience working with pediatric patients and studying how the changes in their DNA translate to increased risk of cancer and result in other physical characteristics, such as differences in skin pigmentation. She brings this expertise to MyPART. Through her work, she hopes to identify pathways in the cells of rare tumors that can translate into treatments and better outcomes for patients. She explains, “I hope to empower patients by helping them understand the genetic basis of their conditions, and by educating them on how they can use this information to manage their cancer so that they may decrease the risks associated with the mutations and tumors they carry.”

When asked about her favorite part of MyPART, she exclaims: “The team! Every person is committed, dedicated and determined to find answers.” Her inspiration though, comes from her patients. She explains, “Every one of the patients I see are an inspiration to me, they are the reason we work hard.  It is humbling to witness their resilience and strength. It makes us want to keep helping them reset goals and expectations [and] to keep finding answers for them.”

To learn more about genetic counseling, watch this video featuring Dr. Margarita Raygada!

Angiosarcoma Awareness, Inc. is a non-profit organization that supports research on angiosarcoma, a rare and aggressive cancer that grows in the lining of blood and lymph vessels. On its website, Angiosarcoma Awareness, Inc. hosts a variety of resources for patients, including a document library of scientific articles on angiosarcoma, information on clinical trials, and links to peer support programs. They also coordinate events for angiosarcoma awareness and manage a Facebook support group for patients and families to connect and share information.

In addition to their board leaders, the organization has a scientific advisory committee of experienced physician researchers to provide guidance on angiosarcoma research and the clinical care of patients. They also partner with several other rare cancer organizations.

Angiosarcoma Awareness Inc. President, Dr. Corrie Painter, also holds a position at the Broad Institute of MIT and Harvard and helps coordinate the Angiosarcoma Project, a research project that collects genetic information, tumor samples, and medical information from patients with the aim of discovering new treatments. We are happy to partner with Dr. Corrie Painter and Angiosarcoma Awareness, Inc. to advance rare tumor research and improve the lives of patients.

Next Advocacy Spotlight: iCureASPS

• Thyroid Cancer Awareness Month – Sep: In addition to Childhood Cancer Awareness Month, September is also Thyroid Cancer Awareness Month. Visit our advocacy partner, ThyCa, to learn more.
• Desmoid Tumor Awareness Month – Sep: September is also Desmoid Tumor Awareness Month. Visit our advocacy partner, Desmoid Tumor Research Foundation, to learn more.
• National Post-doc Appreciation Week – Sep 21-25: We will be featuring our post-doctoral researchers and their research on our Twitter account to show our appreciation for all of their hard work – follow @NCI_CCR_POB to learn more!
• NCI Facebook Watch Party – Sep 23, 3:00 pm EDT: Lori Wiener, expert in psychosocial care for children and young adults with serious illness, will be answering audience questions live during a Facebook Watch Party on the NCI Facebook page.
• National Organization for Rare Disorders Rare Summit – Oct 8-9: This year, the NORD Rare Summit will be held virtually. Co-leader of MyPART, Dr. Karlyne Reilly, will speak at the event and MyPART will host a virtual exhibit booth and provide resources, information, and the opportunity to “meet” virtually with fellow meeting participants. Learn more here.