Resources

Helpful resources, support, and community are available throughout the journey

Lily, lives with pLGG, and her family.

Video thumbnail: Advocating for your child's educational needs in pediatric low-grade glioma (pLGG)

Webinar Series—Episode 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.

Video thumbnail: From two moms to other mothers caring for a child with pediatric low-grade glioma (pLGG)

Webinar Series—Episode 1: From 2 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.

Thumbnail: pediatric low-grade glioma (pLGG) Doctor Discussion Guide

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
Thumbnail: The ABCs of Educational Advocacy: Supporting your child living with low-grade glioma at school

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
Video thumbnail: A deep dive into pediatric low-grade glioma (pLGG)

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.

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Connecting 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*:

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

Your healthcare team, in addition to your pLGG community members, are important resources for support.

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