November 2024: Funding Award Updates
The Ependymoma Research Foundation has funded $100,000 total in direct funding to the labs of Jun Qi, PHD and Mariella Filbin, MD at Dana Farber Cancer institute to investigate the use of protein degradation as a method to target a protein closely associated with PFA ependymoma called EZHIP. Multiple recent peer reviewed articles have identified EZHIP as a possible drug target for the treatment of many types of PFA ependymoma and protein degradation may provide a long sought after targeted therapy. It is anticipated that additional funding will be required for this project and the Ependymoma Research Foundation has started a new fundraising campaign to provide additional funding for this project over the next 12 months.
The Foundation would also like to report that a second $50,000 in grant funding will be provided to Dr. Marcel Kool, PHD at the Princess Maxima Medical Center at Utrecht, the Netherlands to study targeting another protein associated with EZHIP called USP7. USP7 was recently reported as acting as a stabilizing protein for EZHIP. The aim of the study will be to determine if USP7 can be successfully targeted as a directed treatment for PFA Ependymoma.
Based on our current review of published literature, the foundation believes that EZHIP provides the clearest possible drug target for PFA ependymoma and further projects in this area are currently being considered. Please check back periodically for updates.
September 2024: The Ependymoma Research Foundation will be attending the Genesis Battlegreen Run.
Come run (or walk) with us. We will be raising funds for the Ependymoma Research Foundation on Sunday, November 3, 2024 at the Genesis Battlegreen Run, in Lexington, MA.
When: November 03, 2024, 12:15 PM
Where: Lexington High School Field house: 251 Waltham St., Lexington, MA 02420
EVENT DETAILS:
The 25th Annual Genesis Battlegreen Run/Walk is Sunday, November 3th, 2024 at 12:15 PM
JOIN OUR TEAM, Ependymoma Research Foundation!
We are participating in this race to raise money for a cure to ependymoma for a directed research project at Dana Farber Cancer Institute (SEE BELOW). All funds collected will be directly applied to the project.
Sign up here: Sign up for the 2024 Battlegreen Run
When you get to the team selection page make sure you choose "Ependymoma Research Foundation" as your team.
September 2023: The Ependymoma Research Foundation will be attending the Genesis Battlegreen Run.
Come run (or walk) with us. We will be raising funds for the Ependymoma Research Foundation on Sunday, November 5, 2023 at the Genesis Battlegreen Run, in Lexington, MA.
When: November 05, 2023, 12:15 PM
Where: Lexington High School Field house: 251 Waltham St., Lexington, MA 02420
EVENT DETAILS:
The 25th Annual Genesis Battlegreen Run/Walk is Sunday, November 5th, 2023 at 12:15 PM
JOIN OUR TEAM, Ependymoma Research Foundation!
We are participating in this race to raise money for a cure to ependymoma for a directed research project at Dana Farber Cancer Institute (SEE BELOW). All funds collected will be directly applied to the project.
Sign up here: Sign up for the 2023 Battlegreen Run
When you get to the team selection page make sure you choose "Ependymoma Research Foundation" as your team.
May 2023:
The Ependymoma Research Foundation funded $50,000 of a $100,000 project to investigate the use of protein degradation technology targeted toward the novel protein EZHIP. The work will be conducted through the lab of Mariella Filbin, MD and Jun Qi, PhD at Dana Farber Cancer Institute on Boston. This novel technology may yield a long sought after targeted therapy for PFA ependymoma.
April 2023:
Dr. Jeffrey Clayman, President of the Ependymoma Research Foundation was recently invited to the Boston University School of Communication to speak about the foundation, the current state of research into Ependymoma and our plans for funding. You can view the video here.
September 2022: The foundation was recently featured by local news channel WCVB by reporter Erica Tarantal.
September 2022: The Ependymoma Research Foundation will be attending the Genesis Battlegreen Run.
Come run (or walk) with us. We will be raising funds for the Ependymoma Research Foundation on Sunday, November 6, 2022 at the Genesis Battlegreen Run, in Lexington, MA.
When: November 06, 2022, 12:15 PM
Where: Lexington High School Field house: 251 Waltham St., Lexington, MA 02420
EVENT DETAILS:
The 25th Annual Genesis Battlegreen Run/Walk is Sunday, November 6th, 2022 at 12:15 PM
JOIN OUR TEAM, Ependymoma Research Foundation!
We are participating in this race to raise money for a cure to ependymoma for a directed research project at Dana Farber Cancer Institute (SEE BELOW). All funds collected will be directly applied to the project.
Sign up here: Sign up for the 2022 Battlegreen Run
When you get to the team selection page make sure you choose "Ependymoma Research Foundation."
June 2022:
The Ependymoma Research Foundation has decided to move forward with funding of a $100,000 project to investigate the use of protein degradation technology targeted toward the novel protein EZHIP. The work will be conducted through the lab of Mariella Filbin, MD at Dana Farber Cancer Institute on Boston. This novel technology may yield a long sought after targeted therapy for PFA ependymoma. We are currently fundraising for this project are currently at 30% of out goal. Please contact us if you are interested in contributing.
April 2022:
The Ependymoma Research Foundation has received some preliminary findings from the Taylor Lab regarding a project funded through StopHersentumor.nl in March of 2021. The funded project was to investigate the use of perflurocarbon nanoparticles (PFC) to deliver a high oxygen concentration to an Posterior Fossa A Ependymoma Tumor Bed to determine if the known insensitivity of Ependymoma to a high oxygen environment could be translated into a therapy. With the funding received, initial experiments have been completed to determine the stability of PFC particles on a culture system and a system has been developed to reproducibly deliver nano particles into an animal model. Please check back for updates.
November 2021:
The Ependymoma Research Foundation has funded USD $50,000 to the lab of Mariella Filbin, MD, PHD and Bernhard Englinger, PHD, to complete a translational project related to the use of fibroblast growth factor inhibitors as a treatment for posterior fossa type A ependymoma (PFA) in a mouse model. Recent work in Dr. Filbin and Englinger's lab has revealed that fibroblast growth factor receptors 1 and 3 are over expressed in ependymoma and that they are both critical for PFA stemness and inhibition inhibits growth in in vitro models. This in vivo experiment will particularly focus on PFA in a mouse model to examine the ability of these drugs to cross the blood brain barrier and to assess their overall effectiveness to inform a future human trial of this class of medications.
October 2021: The Ependymoma Research Foundation will be attending the Genesis Battlegreen Run.
Come run (or walk) with us. We will be raising funds for the Ependymoma Research Foundation Sunday, November 3, at the Genesis Battlegreen Run, in Lexington, MA.
When: November 07, 2021, 12:15 PM
Where: Lexington High School Fieldhouse: 251 Waltham St
EVENT DETAILS:
The 25th Annual Genesis Battlegreen Run/Walk is Sunday, November 7th!
JOIN OUR TEAM, Ependymoma Research Foundation!
We are participating in this race to raise money for a cure to ependymoma.
Sign up here: Sign up for the 2021 Battlegreen Run
When you get to the team selection page make sure you choose "The Ependymoma Research Foundation."
After you complete your registration you can begin to fundraise for our team. Please use and share the following link: Fundraising Link! https://charity.gofundme.com/o/en/campaign/ependymoma-foundation1/battlegreen-run-foundation-inc?modified=1
April 2021: This Saturday, April 10th is #nationalsiblingsday and to celebrate we will be hosting an online book reading with our co-founder Samarrah Fine Clayman! We will be partnering with the Ronald McDonald House Charities (RMHC) and Christopher's Haven ! Join us with your family to read the book! Register Here
April 2021: The Ependymoma Research Foundation is beginning a new funding cycle and will shortly be sending out new invitation only requests for research proposals offering $55,000 USD of support.
The successful applicant would present a project to us that would build on the existing database of knowledge leading toward a cure for PFA and PFB ependymoma which could be deployed quickly to allow an improvement in the current standard of care and be life extending or curative. We are most interested in high risk projects which would otherwise not be funded by traditional funding mechanisms which could rapidly propel treatment forward.
To apply, we require a two page (maximum 500 words) memorandum outlining a specific project related to the above research (with supporting references) and how the funds would be applied. The deadline for the application is currently 4/20/21. Funds will be made available to the successful application at latest 6/15/21. Please either mail or email your proposal to jclayman10@gmail.com in .pdf form. We will then review that application and contact you with any questions that our foundation members and partners may have.
March 2021: The Ependymoma Research Foundation has completed its first funding project. Between August and December of 2020, The scientific committee of the Ependymoma research foundation led by Dr. Jeffrey Clayman, solicited proposals for research based on recent research and brokered financing from private citizen Sanne Deurvorst in the Netherlands and the Dutch tumor foundation, STOPHersentumor.nl to provide $97,596.17 CAD for the Michael Taylor Lab in Toronto, Canada. All proposals underwent rigorous review by the Ependymoma Research Foundation and the review board of STOPHersentumor.nl before selection of the winner. The sponsored research is related to recent research suggesting that PFA Ependymoma is dependent on hypoxic conditions for growth. The research will investigate the use of high oxygen affinity perflurocarbon compounds as a medium to impede growth of PFA Ependymoma (and possibly other tumors) in a live mouse model. The hope is that that these compounds could potentially be used to manipulate the microenvironment of PFA Ependymoma to impede or stop growth. Progress related to this project will be periodically reported here.
September 2020: The Ependymoma Research Foundation will be attending the 2020 Genesis Battlegreen Run. Come run (or walk) with us virtually! We will be raising funds for the Ependymoma Research Foundation Sunday, November 1, 2020 at the Genesis Battlegreen Run, in Lexington, MA. You can sign up through the Battlegreen Run Foundation, Inc. and choose team, "Ependymoma Research Fdn." - https://battlegreenrunfoundation.org Or if you rather support the cause without leaving home, you can donate using the link: https://www.crowdrise.com/o/en/campaign/ependymoma-research-foundation
August 2020: The Ependymoma Research Foundation has joined forces with the STOPBrainTumor foundation of the Netherlands and Sanne Deurvorst, also of the Netherlands, to offer $75,000 total in funding for directed brain tumor research to aid in finding a cure for posterior fossa ependymoma Type A/B. The application for the funds is by invitation only.
The successful applicant would present a project to us that would build on the existing database of knowledge leading toward a cure for PFA and PFB ependymoma which could be deployed quickly to allow an improvement in the current standard of care and be life extending or curative. We are most interested in high risk projects which would otherwise not be funded by traditional funding mechanisms which could rapidly propel treatment forward.
To apply, we require a two page (maximum 500 words) memorandum outlining a specific project related to the above research (with supporting references) and how the funds would be applied. The deadline for the application is currently 10/15/20. Funds will be made available to the successful application at latest 12/1/20. Please either mail or email your proposal to jclayman@massmed.org in .pdf form. We will then review that application and contact you with any questions that our foundation members and partners may have.
April 2020: Samarrah Clayman's book has attracted additional media attention from the National Association of Social Workers and the Lexington Colonial Times.
January 2020: The Collaborative Ependymoma Research Network, also known as CERN, has published on online article about Samarrah Clayman and her recently published book, "Will Jax be Home for Thanksgiving." You can find a link to their website here: CERN LINK
December 2020: The first shipment of "Will Jax be Home for Thanksgiving" has arrived! This groundbreaking children's book fulfills an urgent need for a book for young children who are afflicted with pediatric brain cancer to understand their disease and treatment. Books are available here: Order Now. All proceeds from the sale of the book will be applied toward our goal of finding a definitive, side effect and inexpensive cure for ependymoma. Consider buying your book and sending a donation today.
November 2019: The Battle Green Run was a great success for the Ependymoma Research Foundation. 42 walkers/runners from all walks of life showed up for a morning of exercise and food. We do not yet have a final tally of the total amount raised, but will post the amount when we can confirm it. Thank you everyone for making the effort. Your fundraising will make an impact on funding research to end Ependymoma. We are planning on participating again next year.
October 2019: Krystal Leon has published a self care article by Samarrah Clayman for the parents of ill children on "A Sailor's Wife Blog."
October 2019: You can also find a book review by Pamela Brunskill of Samarrah Clayman's "Will Jax be Home for Thanksgiving?" here.
October 2019: The Ependymoma Research Foundation will be attending the Genesis Battlegreen Run.
Come run (or walk) with us. We will be raising funds for the Ependymoma Research Foundation Sunday, November 3, at the Genesis Battlegreen Run, in Lexington, MA.
You can sign up through the Battlegreen Run Foundation, Inc. and choose team, "Ependymoma Research Fdn." - https://battlegreenrunfoundation.org
Or if you rather support the cause without leaving home, you can donate using the link: https://www.crowdrise.com/o/en/campaign/ependymoma-research-foundation
September 2019: Samarrah Clayman has released a preliminary cover for her upcoming book "Will Jax be Home for Thanksgiving?" which is to be published this Fall. The art was created by Amy Preveza. The book deals specifically with how a child and sibling deal with a a brain tumor diagnosis highlighting hope and love. A truly uplifting tale! The book will only be available through the Ependymoma Research Foundation website for a minumum $25 donation. All proceeds from this donation will be directed toward a currently funding project which you can read about here.
August 2019: Samarrah Clayman has agreed to donate all proceeds of her upcoming children's book to the Ependymoma Research Foundation. The book is specifically written and designed to help children and their siblings cope with pediatric cancer. The book is entitled, "Will Jax be Home for Thanksgiving?" An early sketch (c) from the book, drawn by acclaimed artist Amy Preveza, is posted below. The book is expected to be available directly through the Ependymoma Research Foundation Website by November 2019.
*Copyrighted Image, Amy Prevaza, 2019
July 2019: The Ependymoma Research Foundation has been approved as a recognized charity by the Attorney General's Office, State of Massachusetts.
April 2019: The Ependymoma Research Foundation has acquired 501(c)3 status with the IRS.
Available Now!
All profits from the purchase of the book will be directed to pediatric brain tumor research.