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Joseph, lives with pLGG

Community connections

Continued support from the pediatric low-grade glioma (pLGG) community

Connecting with a community of others going through similar experiences can be a great source of comfort and inspiration.

Here are a few pediatric cancer advocacy foundations that can provide resources and help connect you to families like yours. Sharing your stories and experiences may help you feel less alone and better supported.

Finding connections through any of these groups is simply a tap away.

These are only a few of the many pediatric cancer advocacy foundations in the US. Reach out to your child’s care team for a more comprehensive list, including local groups.

Focusing on improving the quality of life for children and their families while supporting work for a cure

Visit Children's Brain Tumor Foundation

Funding research and raising awareness

Visit The Lilabean Foundation

Caring for families, helping survivors, and finding a cure

Visit Pediatric Brain Tumor Foundation

Peer support, education, and community for caregivers of children with cancer

Visit Momcology

Funding a cure for childhood brain cancer through fundraising, advocacy, and awareness

Visit Team Jack Foundation

“The brain tumor community is like a family. They support you no matter what and understand things that nobody else can.”

—Kendra, mom of Breslyn, who lives with pLGG

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IMPORTANT SAFETY
INFORMATION

INDICATION

Before taking or giving OJEMDA, tell your healthcare provider about all of your or your child’s medical conditions, including if you:

have bleeding, skin, or liver problems
are pregnant or plan to become pregnant. OJEMDA can harm your unborn baby.

Females who are able to become pregnant:

You should use effective non-hormonal birth control (contraception) during treatment with OJEMDA and for 28 days after your last dose of OJEMDA.

Males with female partners who are able to become pregnant should use effective non-hormonal birth control (contraception) during treatment with OJEMDA and for 2 weeks after your last dose of OJEMDA.

are breastfeeding or plan to breastfeed. Do not breastfeed during treatment and for 2 weeks after your last dose of OJEMDA.

Tell your healthcare provider about all the medicines you take, including prescription and over-the-counter medicines, vitamins, and herbal supplements.

What should I avoid while taking OJEMDA?

Limit the amount of time you spend in sunlight. OJEMDA can make your skin sensitive to the sun (photosensitivity). Use sun protection measures, such as sunscreen, sunglasses and wear protective clothes that cover your skin during your treatment with OJEMDA.

What are the possible side effects of OJEMDA?

OJEMDA may cause serious side effects, including:

bleeding problems (hemorrhage) are common and can also be serious. Tell your healthcare provider if you develop any signs or symptoms of bleeding, including:
- headache, dizziness or feeling weak
- coughing up blood or blood clots
- vomiting blood or your vomit looks like "coffee grounds"
- red or black stools that look like tar
skin reactions, including sensitivity to sunlight (photosensitivity). OJEMDA can cause skin reactions that can become severe. Tell your healthcare provider if you get new or worsening skin reactions, including:
- rash
- bumps or tiny papules
- acne
- peeling, redness, or irritation
- blisters
liver problems. Your healthcare provider will do blood tests to check your liver function before and during treatment with OJEMDA. Tell your healthcare provider right away if you develop any of the following symptoms:
- yellowing of your skin or your eyes
- dark or brown (tea-colored) urine
- nausea or vomiting
- loss of appetite
- tiredness
- bruising
- bleeding
- pain in your upper right stomach area
slowed growth in children. Growth will be checked routinely during treatment with OJEMDA.

The most common side effects of OJEMDA include:

rash
hair color changes
tiredness
viral infection
vomiting
headache
fever
dry skin
constipation
nausea
acne
upper respiratory tract infection

OJEMDA may cause fertility problems in males and females, which may affect your ability to have children.

These are not all the possible side effects of OJEMDA. Call your healthcare provider for medical advice about side effects. You may report side effects to FDA at 1-800-FDA-1088.

Please see full Patient Information, including Instructions for Use, for more information.

INDICATION

What is OJEMDA™ (tovorafenib)?

OJEMDA is a prescription medicine used to treat certain types of brain tumors (cancers) called gliomas in patients 6 months and older:

that is a pediatric low-grade glioma (LGG), and
that has come back after previous treatment or has not responded to previous treatment and
that has a certain type of abnormal “BRAF” gene.

These are not all the possible side effects of OJEMDA. Call your healthcare provider for medical advice about side effects. You may report side effects to FDA at 1-800-FDA-1088.

Please see full Patient Information, including Instructions for Use, for more information.