Resources
Helpful resources, support, and community are available throughout the journey
Lily, lives with pLGG, and her family.
Webinar #4: Supporting Siblings – Navigating the impact of pLGG on the entire family
When a child is diagnosed with pLGG, the effects ripple throughout the entire family, deeply impacting siblings as well. This crucial conversation will address siblings' unique challenges and offer practical advice on how families can provide vital support to them. Jennifer Kelley, from the Pediatric Brain Tumor Foundation, leads the discussion featuring Darcy Burgers, PhD, and Larissa Hewitt, MSW, LICSW from the Dana-Farber Sibling Program, and Patrick Bower, who has a sibling living with pLGG.
Webinar #3 – Part 1: Empowering Your Voice – Advocating for your child living with pLGG
Watch an online panel discussion designed to empower caregivers with effective and heartful advice to help advocate for children living with pLGG. The first session of this 2-part webinar will feature Stacia Wagner, President of the Children’s Brain Tumor Foundation, and Alistair J. Robertson, Pediatric Oncology Social Worker at Valley Children’s Hospital.
Webinar #3 – Part 2: Empowering Your Voice – Advocating for your child living with pLGG
Watch part 2 of our online discussion with more heartfelt advice and words of encouragement to help advocate for children living with pLGG. This webinar features a question-and-answer session with 2 families living with pLGG, moderated by Alistair J. Robertson, Pediatric Oncology Social Worker at Valley Children’s Hospital, and Stacia Wagner, President of the Children’s Brain Tumor Foundation.
Webinar #2: Advocating For Your Child's Educational Needs
Watch an online panel discussion about the importance of advocating for children living with pLGG in school. The panelists include Kim Buff and Cat Paciente from Momcology, with special guests Dr Cynthia Gerhardt and Dr Kathryn Kirkpatrick from Nationwide Children’s Hospital.
Webinar #1: From two moms to other mothers: Caring for a child living with pLGG
Watch an online discussion, led by 2 mothers of children living with pLGG and founders of 2 pediatric brain tumor foundations, Nicole Giroux from the Lilabean Foundation, and Bri Hoffman from the Team Jack Foundation. They discuss personal experiences, learnings, and perspectives that they have collected along the way while caring for a child living with pLGG.
Doctor Discussion Guide
Use this guide to start an informed discussion with your healthcare team about topics such as Genomic testing = Sometimes referred to as genetic testing, and used to identify types of alterations in genes including those in BRAF and treatment planning.
Download Discussion Guide
The ABCs of Educational Advocacy: Supporting your child living with low-grade glioma at school
Download this brochure to see helpful tips for advocating for your child in school and guidance on how to support his or her educational needs.
Download Brochure
A deep dive into pLGG
Educate your child, your family, and yourself on how the biology of BRAF = a gene that, when altered, may be a driver of pLGG growth-driven pLGG may inform treatment planning.
Play the VideoConnecting with a community of others going through the same experiences can be a great source of comfort and knowledge. Exchanging perspectives and sharing concerns may help you and your family feel less alone and better supported.
Community members can be a great source of advice for topics such as how to talk to your healthcare team. It can be helpful knowing that there are people to turn to for advice who know what you are going through.
A few patient organizations include*:
Children’s Brain Tumor Foundation
Focusing on improving the quality of life for children and their families while supporting work for a cure
Lilabean Foundation
Funding research and raising awareness
Momcology
Peer support, education, and community for caregivers of children with cancer
Pediatric Brain Tumor Foundation
Caring for families, helping survivors, and finding a cure
Team Jack Foundation
Funding a cure for childhood brain cancer through fundraising, advocacy, and awareness
Some of these groups run private social media/Facebook groups that include families with children living with pLGG. Finding connections through any of these groups is simply a tap away.
*This is not a comprehensive list of resources and is provided for reference only.
Knowing who’s on your care team
It’s important to get to know the various members on your child’s healthcare team.
Each person has a different role.
Oncologist
doctor who diagnoses and treats cancer and tumors
Child Life Specialist
healthcare worker who helps families cope with health challenges
Surgeon
doctor who performs surgery
Radiologist
doctor who specializes in MRIs, X–rays, and other imaging procedures used to diagnose and monitor tumor growth
Pathologist
doctor who examines tumor tissue
Nurse
healthcare worker who cares for patients under doctor supervision
Pharmacist
healthcare worker who makes sure medications are being prescribed appropriately
Glossary
Alteration = a type of genomic change (mutation or fusion) in the BRAF gene that may contribute to cancer development
Biopsy = sample of tissue collected for analysis under a microscope and/or for comprehensive genomic testing
BRAF = a gene that, when altered, may be a driver of pLGG growth
BRAF fusion = 1 of the 2 most common types of BRAF alterations in pLGG (ie, KIAA1549-BRAF fusion)
BRAF inhibitor = type of targeted therapy that works on the BRAF protein to inhibit or slow the growth of tumor cells
BRAF point mutation = 1 of the 2 most common types of BRAF alterations in pLGG (ie, BRAF V600E)
FDA approval = treatment has been tested in clinical trials and approved by the US Food and Drug Administration
Genomic testing = Sometimes referred to as genetic testing, and used to identify types of alterations in genes including those in BRAF
Glioma = brain tumor
Grade 1 = low-grade tumor
Grade 2 = low-grade tumor
Low grade = slow growing
MEK inhibitor = a type of targeted therapy that works on the MEK protein to inhibit or slow the growth of tumor cells
Targeted therapy = type of treatment that targets and attacks tumor cells with certain characteristics
