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Cure ATRT

 

Avalanna

 

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1 Colonial Drive,

Merrimac, MA 01860

 

 

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© 2015 by Cure ATRT Now

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877-481-3300

 

Dedicated to winning the fight against atypical teratoid 

rhabdoid tumors.    

Avalanna Routh, age 5

ATRT
Avapalooza

 

 

The annual festival to suppport pediatric brain cancer research. Join us in person or host your own local event

ATRT
FroYo
Makes Me Happy

 

Cure ATRT Now has partnered with Orange Leaf Frozen Yogurt to deliver delicious FroYo to brave children battling cancer. Delivering smiles one

FroYo at a time.

ATRT
Get Involved

 

 

Join the fight against pediatric brain cancer. No matter where you live, what you do or who you are, you can help make a difference. Contact us to learn how

News

Amazon Smile Update

Amazon Smile is a great program for Amazon shoppers to support Cure ATRT Now. Same products, same prices. Just register and select Cure ATRT Now as your charity. A portion of most purchases will be automatically donated to Cure ATRT.

You can add a browser plugin to automatically ensure you're ordering from Smile each time you visit Amazon.

Chrome

Safari: With the release of Safari 12.0, many of the Amazon Smile plugins no longer function. The SmileAllDay plugin, available in the App Store continues to function properly.

Firefox

Research Update

We continue to fight to find a cure for ATRT. This is a long & complicated fight but we are making progress, albeit slowly. This is the research that you & all our generous donors have helped to support over the past few years. We couldn't do this without you. 

Epizyme recently announced results of their Phase I data on patients who have INI1-deficient tumors. Recall that phase I is a dose escalation to ensure safety so most patients get a dose that is substantially below the final dose. That said, the results are quite encouraging – they even had three complete responses. This is quite unusual in a phase I trial and it is now going on to phase 2.

We know this isn't yet the cure we need but we will keep working until we get there. 

To those families that are struggling daily with AT/RT, let this be your Hope.

 

To families that have lost their beloved child to this disease, we do this to honor your brave babies.

Epizyme to Present Pre-Clinical Data

Data will also be presented from preclinical studies demonstrating synergistic activity following the addition of tazemetostat to current small molecule treatments for malignant rhabdoid tumors and atypical teratoid rhabdoid tumors, both rare and aggressive forms of cancer with high unmet medical need.

UK charity abseil for Cure ATRT Now

On September 24th, an abseil event to benefit Cure ATRT Now was held in Derbyshire, United Kingdom. The successful event was organized by the family of Lucy a three-year old girl who was diagnosed with AT/RT at just 10 months of age. Congratulations to everyone involved!

Donations in Lucy's honor can be made on Lucy's tribute page.​

Avapalooza Thank You!

Thank you to everyone who made Avapalooza 2016 another huge success!

As part of this year's event, Cure ATRT Now was pleased to present Dr. Charles Roberts with a check for $106,000 for AT/RT research at St. Jude's Research Hospital.

If you're interested in supporting Cure ATRT Now in its fight against pediatric brain cancer, you can donate here:

Brave Childrens 5k

On April 16 the inaugural Brave Childrens 5K and Princess Sophiella Kid's Dash was held in Riverbend Park in Jupiter, FL. Sophiella's father, Michael Kukie who organized this successful event to benefit Cure ATRT Now provided an overview:

"The park is beautiful with nature trails and many native animals, including peacocks! Approximately 200 people participated, a great turnout for the first year, and I hope to have twice that number next year. When I tally the final figures, close to $8000 will be donated to CureATRT.org. Thanks to all who participated and donated, from the bottom of my heart."

Avapalooza 2016 is on May 21. Join us in person, donate, or register as a satellite spinner to raise funds help fight pediatric brain cancer. All funds go directly to pediatric brain cancer research.

Newly Published Research

Recently published research by Johann et al. show that ATRTs are composed of three epigenetic subgroups that have different clinical characteristics, and identify subgroup-specific regulatory networks that suggest potential therapeutic targets.

Epizyme announces first patient dosed in global clinical program. Dana Farber Cancer Institute and Cincinnati Children's Hospital are the first sites activated for pediatric enrollment.

From October 25th (Avalanna's birthday) through November 26th Cure ATRT Now is sponsoring Let's Nail Cancer, a global social media campaign to bring awareness and raise research funding for pediatric brain cancer.

 

#Let'sNailCancer

Epizyme European Cancer Conference Recap Presentation

This presentation contains a lot of information, much of it very technical. The study is not specific to AT/RT, but does include AT/RT patients and could offer a promising new treatment for AT/RT.

Going Bald for Brennan

In January 2014, Krista lost her beautiful son, Brennan, at 6 months old, to AT/RT. Brennan was a sweet, gentle boy who brought so much happiness and joy to his family.

 

Krista has committed to raising $5,000 for pediatric brain cancer research. When she reaches this amount, she will shave her head in honor of Brennan. In addition, Krista will donate her hair to Wigs for Kids. We are honored to have Krista join Cure ATRT in our fight against AT/RT. Brennan will be forever loved & missed - always.

 

If you'd like to support Krista and Cure ATRT Now, please visit Brennan's Tribute page.

 

Epizyme Announces FDA Acceptance of IND for Tazemetostat for Treatment of INI1-Negative Tumors

Epizyme, Inc. (NASDAQ: EPZM), a clinical stage biopharmaceutical company creating novel epigenetic therapies for patients with cancer, today announced the U.S. Food and Drug Administration (FDA) has accepted the company’s investigational new drug (IND) application for tazemetostat for the treatment of adults and pediatric patients with INI1-negative tumors or synovial sarcoma. In the second half of 2015, Epizyme plans to initiate a multi-center phase 2 study in adults and a multi-center phase 1 study in children to evaluate tazemetostat in patients with relapsed or refractory INI1-negative tumors or synovial sarcoma.

Tributes Page

Please visit the new Tributes pages to make a donation on behalf of a child afflicted with AT/RT.

Avapalooza Update

Update: the official total raised by at 4th Avapalooza is $126,000 for AT/RT research. Thank you to everyone who participated!

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Upcoming Events

6th Annual Avapalooza

April, 7, 2018

We are excited to announce the date for the 6th Annual Avapalooza: Saturday, April 7th, 2018. 💜💛

 

This year, we are changing things up a little.  Avapalooza will be held in multiple locations in Massachusetts & Connecticut.  Some gyms are offering rock climbing, some are offering barre, others max-shred classes. CREW Barre & Cycle will be the host for our Spinathon portion of Avapalooza 2018. 🚴🏼‍♂️

 

To date, Avapalooza has raised nearly $1 million to help fund critical research that is starting to show promise in the fight against AT/RT. 

 

It has now been five years since we lost Avalanna. With each passing year it gets harder to raise funds for research without the best little fundraiser, Avalanna, leading the way. We need your help this year to make this year a huge success. This is our 6th Avapalooza & we all know Av’s fav number is 6. 💜💛

 

If your gym would like to participate in Avapalooza or host a donation class, we would love to assist you in getting started. 

 

Team Captains, let’s get registered, start fundraising & continue our fight for a cure, in honor of Avalanna. 

 

Your support makes it possible to keep Avalanna’s legacy shining bright & this means the world to us.  Help us make the 6th Annual Avapalooza the best one yet. 

 

Thank you 💛💜

Avapalooza 2016

May 21, 2016

2016 will be the 5th year of Avapalooza. It brings together hundreds of people to spin & taste food from great local restaurants. Join us in person for this great event to support pediatric brain cancer research. If you can't join us, ride remotely or donate to support research.

Saturday, November 21

We are pleased to announce the 1st IRCC Holiday Gift Show featuring several local vendors, silent auction items, children performing holiday show tunes, light refreshments, cash bar, surprise guest appearances and much more! The event will also feature a kids nail-painting table in support of #LetsNailCancer (LNC).

 

ENTRANCE FEE: $10 at door. (kids have free admission) This event offers the public and Indian Ridge Country club members an enjoyable day of pre-holiday shopping featuring a number of local businesses while raising funds for Cure ATRT Now's research and patient/family support programs.

October 25, 2015

Between October 25th (Avalanna's birthday) and November 26th Cure ATRT Now will launch Let's Nail Cancer, a global social media campaign to bring awareness and raise research funding for pediatric brain cancer.

 

#Let'sNailCancer

Coming Soon LLL Vacations

TBA

Cure ATRT Now is pairing vacation homeowners and families with children undergoing cancer treatment to provide a much-needed relaxing family experience. Please contact us if you would like to help.

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