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DIPG Navigator

DIPG Navigator is a free valuable resource for families that gives parents access to one-on-one support from a DIPG/DMG experienced and knowledgeable pediatric oncology nurse navigator. The navigator will help educate, connect, and support you throughout your family’s DIPG/DMG journey. These counselors are specifically trained to offer support and guidance to families dealing with DIPG/DMG. You can get personalized guidance along every step, such as understanding the diagnosis, getting a second opinion, locating and getting connected to medical experts, having biopsy considerations, and exploring possible treatment options. You can connect with DIPG Counselors through their website

DIPG-OneLink

A road map created for families by families to navigate DIPG diagnosis.

DIPG-OneLink is a parent to parent pathway used to link a growing curated set of resources for families fighting DIPG Pediatric Brain Cancer.  This Patient Continuum created by parents includes: nurse navigation, the DIPG  National Brain Tumor Board, financial support for families and now, with this site, fully accessible patient directed entry to share clinical records, imaging, multi modal omics data and quality of life assessments  throughout the journey with DIPG  with researchers while also providing families a securely vaulted site for their records.  

DIPG-OneLink was created in collaboration with AWS, Slalom, CBTN, xCures, Tough2gether, Mithil Prasad Foundation, MyDIPG navigator and Gift from a Child. DIPG-OneLink recently launched during BrainStorm Summit 2023. 

Please see the White House Cancer Moonshot Fact sheet that highlights this initiative here.

Additional Resources

  • Upon receiving the devastating news that their child has cancer, most parents immediately seek help and resources to navigate this challenging journey. We understand the importance of finding support from community groups and foundations focused on DIPG (Diffuse Intrinsic Pontine Glioma) in keeping families united and resilient.
  • While we are not directly affiliated with the organizations mentioned below, we want to share them with you, hoping they will provide the same helpfulness and support they offered our family. It’s essential to note that many of these organizations may require an application process or specific criteria to qualify for their aid. This can be an opportunity to reach out to your loved ones and ask for assistance in finding and contacting organizations that can offer support or financial aid to your family. Together, we can face this journey with resilience and find the necessary support to navigate it. These Organizations can help provide financial support

Hope Portal

The Hope Portal is a searchable database that strives to connect childhood cancer families to the information and vast array of support resources they need–faster than ever.

The Hope Portal provides access to a robust list of organizations around the country that provide resources and assistance to children with cancer, survivors, and their families. Families and caregivers can search the Hope Portal for organizations that provide such support as financial assistance, medical travel options, summer camps, and informational resources.  The Hope Portal also lists organizations that offer special wishes or gifts for their child, or support options available for the siblings of childhood cancer patients.  We continue to add organizations to the Hope Portal that provide resources to address the challenges and meet the unique needs of childhood and adolescent cancer survivors and their caregivers.

How Can You Help

  • Sibling Chapter 
    • Get your kids involved by setting up a lemonade stand 
    • Get your kids involved by setting up a Toy drive
  • Donating blood and plasma on a routine basis! 
  • Signing up for the national bone marrow registry: Bethematch.org They send a swab kit for free with step-by-step directions. You send it back, and could potentially save someone’s life from the comfort of your home. 
  • Social Media Outreach. Sharing information and facts about Childhood Cancer on multiple platforms.
  • Volunteering for events in your area that benefit charities or families in need. 
  • Wearing merchandise that supports cancer organizations by purchasing their t-shirts, bracelets, buttons and pins, hats, etc.
  • volunteering, even remotely. Most foundations have events that could use more help (either day or recruiting sponsors/participants) and some (like us) need help with creating materials for social media (short and long form content).
  • Advocacy work. There are groups that can let them know when legislation is pending and then they can reach out to their elected officials to make sure childhood cancer legislation/funding gets prioritized. Good groups for that would be Kids V Cancer or Smashing Walnuts.
  • Just amplifying the message on Twitter or other social media. Likes, shares, retweets, and most of all meaningful comments on posts are extremely helpful.
  • Form to suggest other ideas that would help us help the families
  • For all the people that don’t engage in social media, I think making flyers, canvassing neighborhoods, yes, people can give money but time giving and having these conversations with just every random person on the street, a worker, print off a flyer with families, there needs and how people could help them.
  • Having people sponsor a family, having multiple people just donate $10 a month to a family. People pay for all sorts of subscriptions. Why not a subscription to helping a family? 
  • Support pediatric cancer legislation and ask your representatives too as well. It doesn’t cost a thing and only takes a few minutes of someone’s time to contact their representative and tell them that certain legislation is important to them and why. Right now that legislation would be the Gabriella Miller Kids First 2.0 and the Give Kids a Chance Act.
  • Donation to a cause is good but not great. The reason is that anything that is built to help pediatric cancer requires sustainability.  This is not limited to cancer research.  This can be in the form of social work, or nutrition supplies for families.  Some sort of salary support mechanisms for families to take time off from work without putting them into financial hardship.  Or maybe something fun like art therapy.  Instead of donating money the best way to help is to create sustainable infrastructure.  Infrastructure for social support.  Or like the patient navigator program.  Or the international tumor board.  Any infrastructure program is better than a one-time donation. This also includes creating an infrastructure like chad tough for constant funding support.  Having an effort to build and sustain infrastructure to support kids and families with childhood cancer will lead to the most benefit in my humble opinion.
  • The first thing I ask people to do is sign up to be an advocate. The reasons I give are that there are many ways public policy has an impact on families like yours. For example, our organization engages state and federal legislatures and public health policymakers to make pediatric brain tumor research and treatment a priority at every level of government. In turn, advocates help build those relationships with policymakers and influence their decisions. 
  • Though the cancer moonshot is a big deal, it won’t translate into meaningful change for kids until states, in particular, make pediatric cancer a priority. 
  • If you’d like to become an advocate, you can sign up at http://curethekids.org/advocate. California is a priority state for us, and we’d love to share your voice as we talk with state legislators and policymakers. 
  • Share the need to share our facts as the most deadly cancer and treatment through a center of excellence for best care. 
  • Contact your Senator with a call or email to cosponsor Gabriella Miller Kids First 2.0 which will find $250M in pediatric data UNLESS it expires due to no action this year. 
  • Donate taxable investments, cash, or experiences (which can be auctioned) 
  • Tell pediatricians and family practitioners to find the facts and a referral site at (insert the tumor board site we are developing)