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THE WHYNOTDEVIN FOUNDATION TO END DIPG

Supporting families battling Diffuse Intrinsic Pontine Glioma

At The WhyNotDevin Foundation to End DIPG, our goal is to help alleviate a part of the enormous financial burden this diagnosis carries for families. Learn more about what we do, how you can help, and how we can all benefit from acts of kindness.

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OUR STORY

This is Devin Suau. At six years old, after falling off his snowboard in January 2017 and seeing a doctor about a possible concussion, was diagnosed with Diffuse Intrinsic Pontine Glioma (DIPG).  DIPG is a rare pediatric cancer that is aggressive and unforgiving. The tumor is located in the brain stem, and tragically, because of its location, it is inoperable and has no known cure. Devin's family was told that he had just eight months to two years to live. The news was crippling to Devin's family, but they knew, someone would have to be the first to beat DIPG-

Why Not Devin?

 

Devin was the youngest of four brothers. They loved each other in a way that was inspiring to everyone they met. At such a young age, Devin could light up a room with his contagious laugh and brighten your day with his amazing smile and quick wit.

 

DIPG, because of its rarity, gets very little funding, research, or backing from the medical community. That has to change! Our children deserve a chance to grow up. On October 20, 2017 just shy of nine months following his DIPG diagnosis, and just one week before what would have been his 7th birthday, Devin lost his battle with DIPG. The world lost a superhero, and a family lost their baby.

 

In 2020, in Devin's honor, The WhyNotDevin Foundation to End DIPG was formed as a 501c3. With a mission of aiding and supporting families facing a DIPG diagnosis. The WhyNotDevin Foundation to End DIPG provides resources and financial grants to give every child facing DIPG a fighting chance. Together, we will ensure DIPG doesn't steal another child from their family and their future.

 

WAYS WE HELP

The WhyNotDevin Foundation to End DIPG mission is to help families with a child diagnosed with Diffuse Intrinsic Pontine Glioma, both financially and emotionally.  We also take an active roll in spreading awareness for a "rare" disease that gets little to no funding.

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FUNDRAISING

Through our fundraising events we hope to maximize efforts to help support those families in the fight of their life with DIPG.

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ADVOCACY & AWARENESS

We hope through speaking out and creating awareness for DIPG we can help others in their fight and to someday find a cure.

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DIPG FAMILY GRANTS

WhyNotDevin gives grants to families to help offset the many financial burdens that accompany a DIPG diagnosis.

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ACTS OF KINDNESS

We love acts of kindness!!  In Devin's honor and memory do something kind for someone else.

UPCOMING EVENTS

 
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PAST EVENTS

The WhyNotDevin Foundation to End DIPG holds events to raise money to help families battling DIPG, to create awareness and to bring communities together.

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MITCH ALBOM EVENT

Mitch Albom spoke about his book, Finding Chika, a story of a little girl from Haiti with DIPG.  This event was a beautiful night out in Boston.

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BOSTON MARATHON TEAM

Join our team and run the greatest marathon there is.

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DEVIN'S DASH 5K

Devin's Dash is a 5k for all ages and abilities.  This year we added a virtual race so supporters don't have to be in the Metrowest area to participate.

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”The greatness of a community is most accurately measured by the compassionate actions of its members.”

 

Coretta Scott King