Administrator

Administrator

Privacy Statement

Childhood Brain Tumor Foundation (CBTF) respects and recognizes that protection of privacy is one of the most important issues for Internet users. This statement about our information privacy practices is to ensure that users of the Childhood Brain Tumor Foundation’s website (www.childhoodbraintumor.org) understand how personal information that is collected from our website is used.

The Information We Collect
To enable you to receive communications from us, we request that you join our mailing list and share your e-mail address wih us. We may collect personally identifiable information from you if you become a volunteer, request information, or donate to CBTF.  Information collected may include:  your first and last name, street address, city, state, zip code, telephone number(s), and e-mail address in connection with any request and/or donation you choose to make to our organization. We also may collect certain non-personally identifiable information when you visit many of our web pages such as the type of browser you are using (e.g., Firefox, Internet Explorer), the type of operating system you are using, (e.g., Windows 7 or Mac OS) and the domain name of your Internet service provider (e.g., America OnLine, Hotmail, G-mail).  CBTF does not collect personally identifiable information from you unless you provide it to us voluntarily and knowingly. 

How We Use the Information
Childhood Brain Tumor Foundation does not sell, rent, or exchange any information with third parties that is personally identifiable information that you provide about yourself online without first obtaining your permission. Personally identifiable information you provide about yourself is soley used in response to your requests for information about issues concerning childhood brain tumors and to for CBTF to provide information about our organization. We sometimes use this personally identifiable information to communicate with you, such as to notify you of our fundraising efforts or to inform you of changes to our registered user agreements. We also may use such information, combined with information from outside records, to send you our newsletter or to communicate with you via postal mail.
Health-related information is considered privileged and confidential.  CBTF will not share or release your information to any organization or business entity. We have a strict privacy policy.

Information also is used to generate demographic summaries of Childhood Brain Tumor Foundation’s user base. It may be disclosed in summary form only to third party development partners and industry supporters for the expressed purpose of evaluating overall system utilization and funding opportunities. These summaries never contain information that could identify an individual user.

Non-personally identifiable information that we collect is used to analyze site usage and to improve the design and content of our site.

Unless you explicitly authorize us to do so, we do not share personally identifiable information with third parties, other than in response to legal process or when we believe in good faith that the law requires it, for example, in response to a court order, subpoena, or a law enforcement agency’s request.

Links Posted on our Website
Although the CBTF includes Internet links to other websites, the privacy policy above only applies to the use of the CBTF website.  CBTF does not disclose any personally identifiable inforamtion with the links we have provided and we are not responsible for the privacy practices of those sites. Read the privacy statements associagted with those sites to learn about their policies.  Linking to other sites is not intended to imply that CBTF endorses the associated site's materials or policies.  

Cookies
Childhoodbraintumor.org uses "cookies" to enhance your experience with our site. Cookies are text files we place in your computer’s browser to store your preferences. We cannot use our cookies to determine any personally identifiable information about you. We use cookies to understand site usage and to improve the content and offerings on our site.

Your Choices
If you prefer not to receive newsletters from us, please send a request marked “unsubscribe” to This email address is being protected from spambots. You need JavaScript enabled to view it..

CBTF's Commitment to Security
Childhood Brain Tumor Foundation has ppropriate security measures in place to prevent unauthorized access to information that we collect online.

Reviewing Your Information
You may review your personal information that we have collected online and that we maintain in the ordinary course of our operation and/or request correction of any erroneous or outdated information by sending a request to This email address is being protected from spambots. You need JavaScript enabled to view it..

Changes in Our Privacy Policy
If we materially change our practices in handling personally identifiable information as described in this notice, we will notify you by changing this notice and posting the changed notice at our website.

How to Contact Us
If you have any questions or concerns about the privacy policy for childhoodbraintumor.org or its implementation, please contact us at This email address is being protected from spambots. You need JavaScript enabled to view it..

The information on www.childhoodbraintumor.org is maintained by the Childhood Brain Tumor Foundation, Inc. (CBTF).

Every attempt has been made to conform to prevailing w3.org standards. Comments on the style and content of these pages are welcome. We would like to be notified of broken links, out-of-date information, and other content problems using the Contact Us form on the menu.

CBTF assumes no responsibility for the content, performance, or availability of the pages at this site or the information contained therein.

All rights to the design and content of this information are reserved by the Childhood Brain Tumor Foundation except where indicated. The information may not be used without permission except for limited personal use.

CBTF will use reasonable efforts to include up-to-date and accurate information in this internet site, but makes no representations, warranties, or assurances as to the accuracy, timeliness, or completeness of the information provided. CBTF shall not be liable for any damages or injury resulting from your access to, or inability to access, this internet site, or from your reliance on any information provided at this internet site.

This internet site may provide links or references to other sites, but CBTF has no responsibility for the content of such other sites and shall not be liable for any damages or injury arising from that content. Any links to other sites are provided as merely a convenience to the users of this internet site.

The Childhood Brain Tumor Foundation publishes a newsletter three times per year. In addition to information about upcoming events, the newsletters include educational and scientific aticles concerning childhood brain tumors and related research. Other information is furnished upon request. If you have a special interest, would like to receive the newsletter by mail or e-mail, or need detailed information contact the Foundation.

Please send us your mailing information and we will include you on our private mailing list to receive a copy of our newsletter.

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The Childhood Brain Tumor Foundation

20312 Watkins Meadow Drive
Germantown, MD 20876
(301) 515-2900
Toll-free: (877) 217-4166
This email address is being protected from spambots. You need JavaScript enabled to view it.">E-mail the Foundation

For problems using the site please contact our This email address is being protected from spambots. You need JavaScript enabled to view it..

Many children suffer debilitating side effects from their brain tumors and treatments.  Cures are desperately needed. Help us support important research that will lead to cures for children with brain tumors. Donating is made easy through our Give Online button or by mailing us our downloadable donation form. All donations made in honor of or in memory of someone will be acknowledged to the family or loved one. E-mail preferred: This email address is being protected from spambots. You need JavaScript enabled to view it. or call 877-217-4166 with your special interests regarding research and information.

Contact us if you need additional information about pediatric brain tumors; specific and in general.

Mailing Address: CBTF, 20312 Watkins Meadow Dr, Germantown, MD 20876


GIVE2CHARITY is our secure online donation button for CBTF supporters. A special message or instructions may be included in the message box.

Donating via stock option is also available through GIVE 2 CHARITY, or contact us for our broker. Donations may also be made in your will.

Give2DirectWe accept stock donations, contact us for our account information and broker's contact information via TD Ameritrade.

The Childhood Brain Tumor Foundation depends upon public donations to continue its work. Our online donation form provides several donation options to support research and education. Making a donation through our secure server is fast and easy, and when we receive your donation, we will send you an acknowledgment in the mail for tax purposes.

Click on the Give 2 Charity button above to support pediatric brain tumor research/education as a general or event donation, in honor of, or in memory of someone.


Amazon Smile

When you shop at AmazonSmile, Amazon donates 0.5% of the purchase price to Childhood Brain Tumor Foundation. Bookmark the link http://smile.amazon.com/ch/52-2122976 and support us every time you shop.


If you prefer to mail in your donation, you can download and print the donation form (Word) (pdf) and mail it in.

 Provide support to children suffering from brain tumors. Help fund vital scientific
and clinical research. Through research, there is hope for a cure.


CBTF funds top-quality research and accepts applications for all pediatric tumors. We receive applications through our competitive process and each proposal is peer-reviewed by brain tumor experts. Contact us at This email address is being protected from spambots. You need JavaScript enabled to view it. or call 877-217-4166 if you need general or specific information, have any special interests or questions.

        Services Provided by the Childhood Brain Tumor Foundation

  • Annual support for scientific and clinical research
  • Tri-annual newsletter with reporting of funded research, events, educational articles, and personal stories
  • Family Retreat Day and/or conferences
  • Childhood Cancer Ombudsman Program, (CCOP) to help with health insurance analysis and application, employment, and educational difficulties that may arise during or after treatment
  • Related Articles and Stories
  • Fund-raisers, Events
  • Provides additional specific information about brain tumors or treatments upon request
  • Sponsorship for the International Symposium on Pediatric Neuro-Oncology, 1996, 2000, 2002, 2004, 2006, 2008, 2010, 2012, and [2014]
  • Sponsorship for the Society for Neuro-Oncology annually since 2000 for the International Program.

 

The Childhood Brain Tumor Foundation and Children’s National Medical Center partnered again in the collaboration of the Childhood Cancer Survivorship Conference, Focus on Brain Tumors, on Sunday, May 22, 2011.  The comprehensive conference included excellent topics and expert speakers from the region who shared their knowledge.  

If you are interested in any information that was covered, please contact the foundation to inquire about any of the available copies of Power Point presentations,  This email address is being protected from spambots. You need JavaScript enabled to view it..

We look forward to future collaborations that provide vital information to families.

On November 10, 2012, the Childhood Brain Tumor Foundation held its annual fall Casino Gala since inception.  The event included plenty of activity, live band, silent auction, buffet dinner, open-bar, and our casino games.  The CBTF Board of Directors and Advisory were pleased to recognize three oustanding volunteers this year. 

We are deeply appreciative for the sponsorship support given by Whittles Physical Therapy, Second Chance Band/UVFD/JKS Spirit Fund, Children's National Foundation, and other anonymous sponsors.  It is through the support of businesses, friends, families, medical professionals, and general supporters that we will continue forward with our vital program initiatives.  Together, with all of our supporters, we will make a difference and we will help fund important research initiatives to find a cure.

Thank you to all of our event supporters! Thanks to all who support our organization every day!

Please click on the following links to read about CBTF funded grants (Unless otherwise noted, most studies are funded for up to two years):

Additional summaries are available in our fall newsletter editions.

Clinical and biological relevance of PI3K/AKT/mTOR

pathway activation in pilocytic astrocytoma

Fausto J. Rodriguez M.D., Johns Hopkins School of Medicine

(Report from funding, 2011-2012)

This study has been published in two journals.

 

Pilocytic astrocytomas (PA) are low grade neoplasms that represent the most frequent gliomas in children and your adults. Most of these tumors have an excellent outcome after gross total resection. However a subset progress clinically despite standard treatments, particularly those that arise in anatomic locations where a complete resection is not possible. Therefore, a basic understanding of the molecular mechanisms responsible for PA biology is needed in order to provide novel curative treatments.

 

The most frequent, consistent molecular abnormality in PA is activation of the MAPK pathway, usually as a result of activation of BRAF. However, several lines of evidence    suggest that other signaling pathways may also play a role in the biology of these tumors. One such pathway is PI3K/AKT/mTOR which contributes to cellular proliferation and growth, and may be targeted with currently available drugs. In the past year, with the support of CBTF, we have tested numerous components of the mTOR pathway using tissue microarrays of surgically obtained PA tissue (n=114). Our data suggests that mTOR is active in a significant subset of these tumors, based on moderate to strong pS6 immunostaining in up to approximately 60% of tumors tested.

 

We currently know that mTOR in the cell exists in association with other proteins in two   different complexes: mTORC1 and mTORC2. One of our preliminary observations is that   Raptor (a component of mTORC1) is increased to a greater extent than Rictor (a component of mTORC2) in sporadic PA, while the converse was noticed in diffuse and high grade gliomas. In follow-up studies, we are analyzing the prevalence of these alterations by clinicopathologic subgroups, including tumors arising in different parts of the brain.  Additionally we are studying the mechanisms responsible for mTOR activation in pediatric low grade gliomas, and the effect of pharmacologic inhibition of the pathway on tumor growth in model systems. 

 

We are grateful to the CBTF and Tennis for Tumors for their kind support for these studies.                                             CBTF thanks Dr. Rodriguez for his very informative progress report.

 

 

Clinical and biological relevance of PI3K/AKT/mTOR pathway activation

 in pilocytic astrocytomas

 (new 2011-2012, one-year)

PI:  Fausto J. Rodriguez M.D., Johns Hopkins Medical Institute

 

Patients with pilocytic astrocytoma (PA) generally have favorable outcomes following surgical intervention, although a subset may cause significant morbidity or mortality, despite lack of atypical histologic features. Unlike diffuse gliomas, increased proliferation, invasive growth pattern, and/or necrosis do not always predict aggressive behavior in PA, although we have previously shown that frank anaplastic histologic change in the form of brisk mitotic activity with or without necrosis may portend a worse survival. Insight into the molecular alterations and pathways underlying aggressive behavior in pediatric low grade gliomas is needed, to decrease the morbidity and mortality associated with these tumors and conventional therapies. The importance of the PI3K/AKT/mTOR signaling axis has been highlighted in diffuse and high grade gliomas, and there is increasing interest in pharmacological targeting of this pathway in the pediatric setting, given recent successes reported with some low grade gliomas such as subependymal giant cell astrocytoma.    However, little is known about the role of AKT/mTOR signaling in PA, the most common primary glioma in children. Some studies have highlighted a role for mTOR activation in NF1-associated PA, and we have also reported preliminary data suggesting that it mediates phenotypic variations in NF1-associated low grade gliomas with unusual morphologies.  In addition, we have recently documented an association with phospho-AKT (ser473) and specific aggressive PA subtypes, but its clinical significance, in particular relationship to outcome, remains to be tested in a formal manner to justify specific therapeutic approaches. The goal of this proposal is to examine the role of PI3K/AKT/mTOR signaling in PA to determine if therapies targeting this pathway should be tested in children.

We are grateful to the CBTF and Tennis for Tumors for their kind

support of this grant.

Thanks to Our Sponsors