Tough2gether

Our Mission

Tough2gether Foundation’s mission is to fill gaps in the current pediatric brain tumor system. Our work includes funding DIPG and DMG research, clinical trial access for DIPG and DMG patients, improving use of patient data, advocacy, and support for the emotional and financial needs of families facing childhood cancer. We seek to support those efforts which fall through cracks for. patients within the existing framework.

CANCER YOU
WON’T WIN!!!

Founding Families

Spotlights

NEW!!! Dimple’s “Together” line of jewelry is now available! 10% of every sale benefits Tough2gether Against DIPG DMG.  This high quality jewelry is exceptionally handcrafted to celebrate and commemorate neverending love and connection. We love recommending products to our friends.  Dimples line of jewelry is no exception.  We purchased the fingerprint line jewelry last year from the company and have been thrilled with its quality and unique design. Order now and the company will hand deliver it to CureFest.

Meet Jace

Tough2gether Foundation inspires collaborative groups to share ideas so that all, working together, may best fill the gaps in research and in the needs of families facing pediatric brain cancer.  We push hard for work to be done quickly and efficiently like lives depend on it, because we know first hand, young lives truly do.

Jace Ward

“I can't die

I'm busy”

What We Do

Tough2gether Foundation inspires collaborative groups to engage and share ideas so that all, working together, may best fill the gaps in the needs of families facing pediatric brain cancer. We push hard to evaluate the status quo and to be a thought leader in innovation. We encourage work to be done quickly and efficiently, like lives depend on it, because we know first hand, young lives truly do.

To date we have: (i) helped conceptualized the My DIPG Navigator and continue to fund it as a navigation partner; (ii) founded the DIPG DMG Research Funding Alliance (“DDRFA”) with 60+ foundations and continue to coordinate DDRFA’s grant funding rounds; (iii) organized and co-fund the DIPG DMG National Brain Tumor Board; conceptualized, underwrite and coordinate the national BrainStorm Summit conference for 500+ families, advocates, researchers, clinicians and policy makers in Washington DC; (iv) co-founded and co-fund the LiveBrave2gether DIPG/DMG Support Network, and (v) launched the Tough2gether Fighting Childhood Cancer online app. We’re not done yet.

Locally, we are engaging in the Kansas Cancer Plan, in the best practices for pediatric palliative care in Kansas, and to better streamline family support for local families impacted by kids cancer to make the journey of pediatric cancer less painful.

We participate in, and often speak at, research conferences across the country such as Cancer Moonshot Childhood Cancer Forum, Cancer Moonshot Brain Tumor Forum, Society of Neuro Oncology conference, Pediatric Society of Neuro Oncology conference, NIH Inspire Immunotherapy conference, Phacilitate Gene and Cell Therapy Conference, Coalition Against Childhood Cancer workshops, Children’s Brain Tumor Network conference, CCDI Symposium, ChadTough Defeat DIPG Researcher’s Workshop, Pacific Pediatric Neuro Oncology Symposium, Rare KC conference and many more. In recognition of our work in this area, Tough2gether Foundation was asked to help coordinate the White House Cancer Moonshot Brain Cancer Forum and continues to serve on a resulting working group.

Daily, Tough2gether Foundation receives applications for financial support from families struggling under the financial weight of pediatric cancer treatments and travel. We first get to know the families and their needs, then engage other foundations across the country to join with us to assist as we fund the most immediate needs. For some this may be rent, a car repair, Christmas gifts, airfare for travel, funeral services for a child. We understand it is impossible to think, let alone plan, for the day your child battles cancer.

Tough2gether Fighting Childhood Cancer helps families in Northeast Kansas as well. Our neighbors fighting childhood cancer, of any type, in the Northeast Kansas area must travel far for the best trials and treatments for their children. Tough2gether is committed to support local pediatric cancer families during their child’s fight. Our application for support is open and easy to use.

We advocate nationally and at the state level for additional funding for pediatric cancer research and family support, to reduce barriers to drug approval or travel out of state for care, and to make developing diagnostics and treatments reimbursable by health insurance. Currently, we are intimately involved with the Cancer Moonshot Brain Tumor project, are working on the Give Kids a Chance Act, the Gabriella Miller Kids First 2.0 Act sponsored by our Senator Moran, and an effort to provide federal assistance to every patient diagnosed with GBM or DIPG/DMG from diagnosis and one caretaker per patient. We are also supportive of the Promising Pathways Act.

Whether through thought provoking new conversations at the national or regional level or emotional or financial support for a family, Tough2gether is ready to help. We rely upon a scientific advisory committee to guide our approach to investing in research and trials. We fund grants through DDRFA and as a ChadTough Defeat DIPG Research Partner to bring hope to the families fighting DIPG/DMG now and in the future.

We work with palliative care, holistic medicine, child psychologists and therapists to better understand the best ways to provide education and emotional support available to family members. We keep making the circle bigger to fight childhood cancer 2gether. Tough2gether Foundation co-coordinates the Kids Brain Cancer – Real Talk series, holds a weekly online open hour “2gether in the Battle” for moms in the fight and a “2gether we Heal” for newly bereaved DIPG/DMG moms a monthly support for all bereaved moms, as well as a bi-monthly support group for DIPG/DMG survivors and for DIPG/DMG teen siblings. We underwrite the BrainStorm Summit making sure families can gather annually 2gether to learn, share, connect and heal.

PLEASE COME JOIN US!

On July 1, 2023 we pause to celebrate the life of Jace Ward, our co-founder, DIPG Warrior and fierce childhood cancer advocate. In Jace’s spirit to live every day fully, we invite you and our entire community to take part in a FUN DAY enjoying Jace’s favorite holiday season. We’re working hard to fuel research and family support while waiting to celebrate 2gether the day Kids Live Free of Cancer.  

DDRFA Research Grant Awards Announced

Tough2gether is proud to join with 50+ foundations as a member and the coordinator of the DIPG DMG Research Funding Alliance. In DDRFA’s first year, DDRFA remarkably directed $1.6 million towards groundbreaking research, data initiatives, clinical trial expansion and the creation of the ONLY DIPG DMG National Brain Tumor Board.  Only through the generous support and commitment to collaborate of 50+ foundations are we able to fuel discoveries aiming to end DIPG and DMG as quickly as possible.

DDRFA’s 2022- 2023 grant recipients and their respective projects are as follows:

  1. Carl Koschmann, MD, University of Michigan: CLIA certified assays for plasma based disease response monitoring in histone mutant DIPG DMG.
  2. Javad Nazarian, PhD and Sean Mizoguchi, PhD, Children’s National Hospital: In Vivo Studies to Transform DIPG DMG Research & Care through rapid validation of effective combinatorial therapies.
  3. Tim Stuhlmiller, PhD, xCures and Santosh Kesari, MD, PhD, Pacific Neuroscience Institute – A patient centric platform approach for DIPG DMG natural history and efficient clinical data exchange.
  4. John Ligand, MD, University of Florida, Impact of RNA nanoparticle vaccine on immune response to DIPG DMG.
  5. Javad Nazarian, PhD, Children’s National Hospital and Aaron Diaz, PhD, UCSF – Mapping DMG response and resistance to therapy.
  6. Dr. Erin Gibson and Dr. Laura Prolo, Stanford University: Targeting Circadian Regulation of Epithelial – Mesenchymal Transition and Tumor Invasiveness in Pediatric Gliomas.
  7. Dr. Adam Green, Children’s Hospital of Colorado: Adding Bortzomib through Focused Ultrasound to Selinexor and Radiation in Lab Models to Determine Whether There is a Positive Response Against DIPG.
  8. Dr. Anahita Kazerooni, Children’s Hospital of Philadelphia: Prediction of Tumor Progression in Patients with DIPG DMG Using Volumetric Measurements Obtained Via Automatic Deep Learning Brain Tumor Segmentation.
  9. Dr. Stuart Marcus, Sonalasense: Phase 1 / 2 of Sonodynamic Therapy using SONALA-001 and Exablate 400 Type 2 in Patients with DIPG.
  10. Dr. Carl Koschmann, University of Michigan: Mioncoseq Sequencing of Patients for the DIPG DMG National Brain Tumor Board.
  11. Dr. Capucine Van Rechem, MD, Stanford University: Characterizing the Roles of the H3.1K27M and H3.3K27M Mutations to Reveal New Treatments and to Expand the Frontier of Personalized Treatment.
  12. Dr. John Prensner, MD, University of Michigan: Deciphering aberrant RNA translation in DIPG, the purchase of the ultra centrifuge.

Tough2gether is proud to be a member of DDRFA funding grantees of these grant projects as we work together to end the ravages of DIPG DMG as we know it. With each grant, we fuel hope for a future without this tumor’s ravages.  We know all too well #DIPG Won’t Wait.

To date we have: (i) helped conceptualized the My DIPG Navigator and continue to fund it as a navigation partner; (ii) founded the DIPG DMG Research Funding Alliance (“DDRFA”) with 60+ foundations and continue to coordinate DDRFA’s grant funding rounds; (iii) organized and co-fund the DIPG DMG National Brain Tumor Board; conceptualized, underwrite and coordinate the national BrainStorm Summit conference for 500+ families, advocates, researchers, clinicians and policy makers in Washington DC; (iv) co-founded and co-fund the LiveBrave2gether DIPG/DMG Support Network, and (v) launched the Tough2gether Fighting Childhood Cancer online app. We’re not done yet.

Locally, we are engaging in the Kansas Cancer Plan, in the best practices for pediatric palliative care in Kansas, and to better streamline family support for local families impacted by kids cancer to make the journey of pediatric cancer less painful.

LIVE FREE 5K Race

1.5 Mile Walk, Dog Walk and 100M Kids Fun Run

7:30 am at Wamego Sports Complex | 8:00 am Race start followed by walk and fun run.

(in person and virtual registration available)

LIVE FREE Fun Night

Food, Drink, Inflatables, Kids and Adult Games, Raffles, Memorial Lantern Launch and FIreworks

5:00 pm at the Ward Home, 2201 Columbian Rd. Wamego, KS 66547

8:30 Memorial Lantern Launch (broadcast through Facebook Live for virtual participants)
 
9:30 Fireworks
 

Childhood Cancer Awareness Month

During the month of September, EVERY donation made online to Tough2gether will be MATCHED by Seth Wadley Auto Group.  A portion of every car sold in September by Seth Wadley Auto Group will also be donated.  Help us spread the word to raise funds for research, trial access and as needed to support families in a battle with childhood cancer.

Gold For September

Dine Out Against DIPG

BrainStorm Summit

Join us for the BrainStorm Summit by registering Here.

Tough2gether Against DIPG Breakfast

Our Sponsors