Vivian Rose Weaver Defeat DIPG Foundation Announces $1 Million Donation to DIPG Research, $2 Million 2018 Goal & Lemon Face Challenge

Vivian Rose Weaver Defeat DIPG Foundation, in Husum, WA, is excited to announce that a generous anonymous supporter has donated $1 million that will be used towards DIPG-specific research funding in 2018. Vivian Rose Weaver Defeat DIPG Foundation was inspired by, and established in honor of, Vivian Rose Weaver, who is a smart, articulate, funny, sweet, thoughtful, imaginative, precocious, 3.5-year-old little girl who was diagnosed in February 2018 with a brainstem tumor called diffuse intrinsic pontine glioma (DIPG). DIPG is the deadliest form of pediatric brain cancer.  Vivian Rose Weaver Defeat DIPG Foundation is a chapter of Michael Mosier Defeat DIPG Foundation and part of Defeat DIPG Network.

Co-Founders Katie and Simon Weaver are focusing on Vivian’s care, and her little sister Lucie, as their top priority.  But they are also already making a substantial impact on the field of DIPG research by raising crucial funds to find a cure.

And the Weavers are not stopping with $1 million.

Vivian Rose Defeat DIPG Foundation would like to raise an additional $1 million this year, with an overall 2018 goal of $2 million raised for research.  To put these numbers in perspective, the overall funding for DIPG research in any given year has typically been – at most – $2-5 million in a year.  This is .0005% of the total funding for cancer research.

The funds raised will support the most promising DIPG research initiatives through the Defeat DIPG grantmaking process.  All grant applications go through a rigorous review by a preeminent group of brain tumor experts that serve on the Defeat DIPG Scientific Advisory Council to ensure funds are used efficiently for initiatives with high scientific merit.

We call on everyone to join this effort.  And, it couldn’t be easier.

An initiative called the #LemonFaceChallenge, started by a little girl named Aubreigh who is also fighting DIPG, has triggered worldwide attention to DIPG brain tumors.  It has been heartening to see professional sports teams and coaches, members of the media, and so many others participate. The challenge is in the mold of the Ice Bucket Challenge, which raised $115 million in the summer of 2014 for ALS (amyotrophic lateral sclerosis or Lou Gehrig’s disease), dramatically increasing available funds for research for that disease.

Vivian Weaver, who inspired the $1 million donation to DIPG research, along with her parents Simon and Katie, are asking you to help us generate even more funds to find a cure.  Vivian and the Weaver family are taking #LemonFaceChallenge and calling on you to keep the challenge going.

Here’s what you do:

  1. Take a video of yourself, your kids, your friends, your co-workers – anyone you can who will participate in the #LemonFaceChallenge, which means you take a big bite out of a lemon wedge!
  2. Tell them you are donating to Defeat DIPG and doing the video to find a cure for children facing DIPG, the deadliest form of pediatric brain cancer.
  3. Share the video and tag as many friends as you can and ask them to take the challenge.
  4. Donate to Vivian Rose Defeat DIPG Foundation through the Facebook fundraiser pinned to the top of their Facebook page (which has no processing fees), through their website, or through any member of Defeat DIPG Network.

DIPG is the deadliest form of pediatric brain cancer, with a median survival from diagnosis of 9 months and a near 0% survival overall. DIPG typically strikes children between ages four and eleven. Because of its location in the brainstem where all motor activity is controlled, DIPG is inoperable. The disease progresses by taking over a child’s motor functions one-by-one, typically starting with vision and balance problems, before moving to partial paralysis, followed by the inability to chew, speak, swallow, move and eventually breathe – all of this while the child remains mentally intact.

Raising $2 million through this initiative is a lofty goal.  But, if kids like Vivian can fight hard every single day to beat this brain tumor, we can fight just as hard to make sure there are effective treatments for kids like her.

By supporting Defeat DIPG Network, you have the opportunity to move the needle and help us save lives of our precious children.  Together, we will substantially increase research funding while also greatly increasing awareness of this devastating disease.