NB Nonprofit Intros


(Kyle Matthews) #1

Hey all! If you are involved in a nonprofit which fights neuroblastoma, this is the thread to introduce your mission, your nonprofit, and let folks know you’re here for them to reach out to.

I’ll start!

Because of Ezra seeks to raise funds and awareness for neuroblastoma cancer research making a difference in kids’ survival today. We want to change the story for the next family by finding viable treatments and ultimately, a cure for neuroblastoma.

We partner specifically with researchers, physicians, and scientists who fit our goal of making a difference in survival today. We are committed to knowing the neuroblastoma research landscape and specifically funding patient-affecting trials and research.


That’s the official mission, vision, and model. :slight_smile: We’re big on getting all the people involved in the neuroblastoma community (nonprofits, families, government, research orgs, scientists, physicians, etc) on the same page. We listen to and participate in the conversations across the world to see what’s happening. We pay close attention to what needs to be pushed forward, or what is spinning wheels without going anywhere, or where improvement can be made.

We’re a younger group, this being our 6th year, but have accomplished a lot and are just getting started. We’re proud to be here as one of the founding nonprofits, and hope we’ll eventually not even need to do any of this, as neuroblastoma will come with a promise of “we know how to beat this.”

My wife Robyn and I lost our first-born son Ezra to neuroblastoma in 2010, and this is how we continue to be his parents.


(Monica Jean Faucheux) #2

Hello! I’d love to share a little bit about the Neuroblastoma Children’s Cancer Society! The Neuroblastoma Children’s Cancer Society is a group made up of volunteers, many of whom have children or relatives who are victims or survivors of this disease. Our organization is an advocate for the children who suffer from neuroblastoma and is dedicated to serving as a support center for their families. The primary focus of the organization is to raise money to assist local research in neuroblastoma cancer, and to raise national awareness to focus additional research and funding until a cure can be found.

The group has donated almost $2 million towards research for a cure so far. It was founded in the early 1990s when an organization did not exist yet for neuroblastoma directly. Though it was founded in memory of Michael Sexton, the group was named NCCS so that any family touched by neuroblastoma can create their own chapter with the same goal - funding research for a cure!
http://neuroblastomacancer.org

We have a support group on Facebook and would love any of you to be a part of it: https://www.facebook.com/groups/109654430257/


(Vikki's George) #3

Hello, we are Post Pals, a U.K charity who aim to ‘Post a smile on a sick child’s face’. We send cards, letters and little gifts to seriously ill children aged 3-17 living in the UK. Anyone from anywhere in the world can send post to the children we feature. We also hold an annual party and arrange special moments. We make siblings smile too.

Our website is www.postpals.co.uk and there is a little video about us (featuring a child with NB) here http://youtu.be/l42sKtdPXrw

Post Pals is run by volunteers who are ill themselves so we can be slow to reply


(Kyle Matthews) #4

Welcome! Thanks for all you do.


(Erica Schneider ) #5

Hello all,
After my son Aiden passed we set up a nonprofit called Aiden’s Army.Our main mission is to provide care bags filled with comfort items to children under 2. My mom and I noticed during Aiden’s treatment that many nonprofits wanted to help but the things they offered weren’t really geared towards his age so we tend to focus on the infant/toddler age. We do however send out cards to any child in the US who is battling cancer and they include something small with them-stickers,tattoos, balloons. We also will send a postcard to children from their favorite Disney character (providing it is one that does signatures and we can find them) to kids going on a trip to Disney World with a note saying we hope to see you soon. Last year we did a toy drive for Florida Hospital for Children (where Aiden was for most of his treatment) that took 3 car loads to deliver and we plan on doing it again this year as well as a pajama collection for children at the other hospitals Aiden was at Women and Children’s Hospital in Buffalo,NY and Roswell Park Cancer Institute. You can find us online at http://www.aidensarmypca.com/home.html and we have a facebook group as well https://www.facebook.com/groups/acsarmy/.


(Kyle Matthews) #6

Hey @AidensArmy! I’ve been following along on Facebook since you founded. Thanks for all you do.


(Ronan Foundation) #8

Hey all! We are The Ronan Foundation! Our mission to fund innovative ways to fight childhood cancer began in 2011, when Ronan Thompson passed away from Neuroblastoma before his 4th birthday. Between 2013-2015, we’ve raised over $1 million for childhood cancer research collectively and continue to fund cutting edge research across the country and internationally. We host events, including an annual Runway Heroes fashion show in partnership with Bloomingdales in NYC and an annual Gold Party in Arizona. In 2012, Taylor Swift co-wrote “Ronan” with our founder, Maya, after reading Maya’s blog, and performed it live during her 1989 World Tour. We believe children like Ronan deserve better odds and outcomes. We’re proud to fight alongside you!

Website
[https://www.facebook.com/theronanthompsonfoundation/]


(Elena Gerasimov) #9

Hello,
We are Kids v Cancer, a nonprofit that promotes pediatric cancer research by identifying structural impediments at key junctures in the research
process and developing strategies to address them.

We have recently created a Compassionate Use Navigator, a new service
to assist physicians and families in the application process for investigational drugs. This is a new initiative of KVC, which we presented two weeks ago at the annual meeting of the American Association for Cancer Research. While our focus is to help pediatric oncology patients, the application process is the same for all indications and ages, and we welcome all physicians and families to utilize the Navigator’s resources.

If you or someone you know needs compassionate use drugs, please contact us for help.

The Navigator is available here: http://www.kidsvcancer.org/compassionate-use/.

Kids c Cancer authored and championed the Creating Hope Act, which was passed into law in 2012. The Creating Hope Act provides a market-based incentive to spur pediatric cancer drug development in the form of pediatric priority review vouchers. We also authored the KIDS Initiative to update the Pediatric Research Equity Act (PREA) to help kids with cancer get access to the most promising therapies available.

We invite you to visit our website, www.kidsvcancer.org and our Facebook page, https://www.facebook.com/kidsvcancer/timeline.

Kids v Cancer Team