2024-08-12T11:54:26-00:00 2023-09-30 331037531 Outfitters4 Inc 717 Coliseum Dr NW Winston Salem NC 27106 990 2022-10-01 581966822 Pediatric Brain Tumor Foundation of the United States Inc PEDI 8002536530 380 Knollwood St STE H 125 Winston Salem NC 27103 Larry Little Secretary 8002536530 2024-08-08 true Brittany Emery P02119496 8889299499 2024-08-08 2022 2024-08-08 14:25:15Z X Courtney Davies 380 Knollwood St STE H 125 Winston Salem NC 27103 5058429 false X www.curethekids.org X 1992 GA Eliminate childhood brain tumors and support families living with this devastating disease. 12 11 27 375 0 6000577 4929228 0 21568 129201 0 6022145 5058429 2492677 2397216 0 2189489 2485381 0 668371 1505808 1685929 6187974 6568526 -165829 -1510097 5993060 5390187 727999 1633344 5265061 3756843 X Vision A world without childhood brain tumors. Mission Care. Cure. 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X 2 The Foundation is exempt from federal income taxes under Section 501c3 of the Internal Revenue Code accordingly, the accompanying financial statements do not reflect a provision or liability for federal and state income taxes. The Foundation has determined that it does not have any material unrecognized tax benefits or obligations as of September 30, 2023. XI 2d Donor incentives expense included in revenue for audit reporting purposes. XI 2d Donor incentives expense included in revenue for audit reporting purposes. true Europe Including Iceland and Greenland Research Grant 10000 Wire 1 true Brenner Children's Hospital 1 Medical Center Blvd Winston Salem NC 27157 223849199 501C3 9920 Vs. Cancer Grant Children's Hospital of Philadelphia 3401 Civic Center Blvd Philadelphia PA 19104 232237932 501C3 245000 Research Grant Geisinger Janet Weis Children's Hospital 100 N Academy Ave MC 40-36 Danville PA 17822 240795959 501C3 18719 Vs. Cancer Grant Levine Children's Hospital 208 East Blvd Charlotte NC 28203 566060481 501C3 11072 Vs. Cancer Grant Noah Brave Foundation 813 Charming Court Franklin TN 37064 862429764 501C3 10072 Vs. Cancer Grant Children's Hospital and Medical Center Omaha 8200 Dodge St Omaha NE 68114 470979754 501C3 6801 Vs. Cancer Grant OSF Children's Hosptial of Illinois 530 NE Glen Oak Ave Peoria IL 61637 370813229 501C3 6873 Vs. Cancer Grant Tampa General Hospital 1 Tampa General Circle Tampa FL 33606 232354477 501C3 5251 Vs. Cancer Grant UNC Lineberger Comprehensive Cancer Center PO Box 1050 Chapel Hill NC 27514 566001393 501C3 6456 Vs. Cancer Grant Central Brain Tumor Registry of the United States 625 South County Line Road Hinsdale IL 60521 363918407 501C3 10000 Research Grant Children's Healthcare of Atlanta 1575 Northeast Expressway Atlanta GA 30329 582367819 501C3 145639 Research Grant CHOP Research Institute 3401 CIVIC CENTER BLVD PHILADELPHIA PA 19104 232237932 501C3 30000 Research Grant Dana-Farber Cancer Institute 450 Brookline Avenue BP418 Boston MA 02215 042263040 501C3 370666 Research Grant Georgia State University Research Foundation 58 Edgewood Ave 3rd floor Atlatnta GA 30303 581845423 501C3 53810 Research Grant Public Health Institute 555 12th Street 600 Oakland CA 94607 941646278 501C3 200000 Research Grant Regents of the University of Michigan 3003 S State St 5082 Wolverine TWR Ann Arbor MI 48109 386006309 501C3 140000 Research Grant Saint Jude Childrens Research Hospital 262 Danny Thomas Place Memphis TN 38105 620646012 501C3 200000 Research Grant The Washington University 7425 Forsyth Blvd MSC 1299414355 Saint Louis MO 63105 430653611 501C3 118079 Research Grant UPMC Children's Hospital of Pittsburgh 4401 Penn Avenue Pittsburgh PA 15224 251865744 501C3 8181 Vs. Cancer Grant Ann & Robert H Lurie Children's Hospital 225 E Chicago Ave Box 130 Chicago IL 60611 362170833 501C3 7388 Vs. Cancer Grant Baystate Children's Hospital 759 Chestnut St 4th Floor Springfield MA 01199 042790311 501C3 9527 Vs. Cancer Grant Nationawide Children's Hospital 525 East Mount Street Columbus OH 43215 311036372 501C3 143500 Research Grant Vanderbilt University Medical Center 3319 West End Ave Ste 900 Nashville TN 37203 352528741 501C3 97500 Research Grant American Assoication for Cancer Research 615 Chestnut Street Ste 1700 Philadelphia PA 19106 236251648 501C3 66000 Research Grant 24 Direct Aid to Families 624 461483 Part I Line 2 All annual research grants are reviewed by our research advisory network and evaluated on several criteria, including scientific merit of the grant application scientific background of the researchers the peer reviewed research publications of the principle investigators applying the supporting collaborative research environment in the research institution and the viability of research environment in the research institution and the viability of research proposed, and facilities available. Each grant recipient is required to submit periodic updates, and a final report before the final grant payment is made. Each research application has to have a hypothesis driven research proposal. Each application must have a list of specific aims that are to be achieved over the timeline of the research project. A timeline is requested for the achievement of the specific aims. The progress reports require that the achievement of the specific aims be detailed with a scientific description of the manner in which they were achieved. If an event has occurred that alters the achievement of the specific aims within the timeline of the research plan the researchers must give a reason that it has not been achieved and a no cost extensions may be requested, and a new timeline is established before the final progress report is issued. Each grant allows for the opportunity of a site visit by the PBTF and these site visits are made by the director of research as well as the senior scientific research advisor, the PBTF president as well as the executive director. Researchers present their research results in person and the PBTF asks questions about the results. All grant applications and research projects have the same requirements on grant approval and reporting regardless of the location of the researcher and his/her institution. These reports are reviewed by our Director of Research Funding and our contracted Senior Scientific Research Advisor. Final approval on all grants is conditioned on Board of Director approval. X X X false false false false false false false false false Geoff Still CFO/COO 161839 10931 8054 180824 Courtney Davies CEO/President 281109 7646 8054 296809 Ian M Joyce Chief Marketing Mission Experience Officer 143265 6563 8054 157882 Amy Weinstein AJ Janower - Chair 75000 See below false Part IV Line 1 Business transactions involving interested persons A Name of person Amy Weinstein D Description of transaction National Director, Research Investments Independent Contractor. X 4 19075 FMV Form 990, Part III, Line 4 The Pediatric Brain Tumor Foundation PBTF leads the way in ending the childhood cancer communitys biggest crisis through research funding, family support and advocacy. Dedicated wholly to addressing this rare, but devastating disease and guided by the experiences of patients, survivors, their parents, and siblings, PTBF is the only organization to meet families needs along every step of their cancer journey. The largest patient advocacy funder of pediatric brain tumor research, we also fund and advocate for innovative projects that lead to vital discoveries, new clinical trials, and better treatments all bringing us closer to a cure. Research PBTF funds scientific research, provides educational, emotional and financial resources, and advocates for policies that improve outcomes and quality of life for pediatric brain tumor patients and survivors, and their families. In 2023, PBTF invested in 14 new research projects at 12 medical institutions in the US, funding basic science exploration, fostering collaboration in the field, creating opportunities for early career investigators to establish productive labs, and supporting key infrastructure, networks and consortia. Previous years seed funding also continued to deliver results, with investments in diagnostic advances, more translatable animal models, and the development of novel treatment approaches leading to researchers continuing to win multi-million dollar National Institutes of Health and other government and industry funders ensuring every donor dollar achieves its fullest potential to improve kids lives. Clinical Trials PBTFs funding of MEK pathway related studies from basic science through clinical trials has contributed to the discoveries of new targeted therapies for children with brain tumors, such as Novartis Tafinlar Mekinist, a targeted therapy approved by the FDA in 2023 for children with low grade gliomas with a BRAF V600E mutation. Low grade gliomas are the most common pediatric brain tumor, and children with the BRAF V600 mutation typically experience poor survival outcomes and a less favorable response to chemotherapy. As a first line treatment, children with this tumor type and mutation will now be given the opportunity to take Tafinlar Mekinist without having to first go through other treatments like chemotherapy and its toxic side effects. As survival rates for medulloblastoma and other types of pediatric brain tumors rise, its critical that researchers, patient advocacy organizations, and families understand how different treatments will affect survivors cognitive, physical, social, and emotional well-being over time. Studying a treatments long term impact can help determine its true effectiveness and ultimately lead to improved quality of life for survivors and their families. In 2023, PBTF and the Christopher Brandle Joy of Life Foundation teamed up to fund a prospective international SIOPE/CONNECT phase-III study that will compare the outcomes for two highly effective medulloblastoma treatment regimens, defining the new gold standard of treatment for young children with this malignant and fast-growing form of brain cancer. Delays in diagnosis lead to delays in treatment time that kids with brain cancer dont have. In 2023, PBTF partnered with Catching Up With Jack to bring the QIAcube, an advanced centrifuge technology, to the University of Michigans Koschmann Lab, accelerating their development of liquid biopsy tests. These tests offer a potentially game changing approach to diagnosing and monitoring pediatric brain tumors that would screen patients cerebrospinal fluid, blood, or plasma for the presence of circulating tumor DNA. Building on PBTFs previous funding of this faster and more accurate way to detect pediatric brain tumors, the technology funded through our most recent investment will help get this promising screening method out of the lab and into clinics faster. 2023 Family Support Program Highlights Because pediatric brain tumors are a rare disease, it can be difficult for patients, survivors, and their families to meet other people who share the same experiences. Through resources like our online support groups and peer-to-peer mentoring, the Pediatric Brain Tumor Foundation connects family members with a welcoming and understanding community where they can learn and find support from other families like them. In 2023, we saw this community grow, with more families reaching out to help others facing the same challenges they once endured. Feedback from patient families and healthcare partners identified a significant need among native Spanish-speaking parents and caregivers for easier to understand information in Spanish. In response, PBTF expanded Spanish-language resources and outreach efforts in 2023, resulting in a 98 percent year over year increase in families accessing Spanish language support. Participation in online support groups expanded, with support groups for newly diagnosed, bereaved, and Spanish speaking families now meeting monthly. With the 2023 launch of our Sibling Space Art Support Group, siblings of children with brain tumors also have a haven to connect with one another and express their feelings through art. 2023 saw a significant increase in the number of parents and caregivers volunteering to offer one on one support to other families. Because of this, more families can now access peer to peer mentoring, including bereaved parents, with the number of bereaved mentors doubling year over year in 2023. Parents and caregivers of children with brain tumors are essential members of their childs care team and deserve to feel confident in their ability to advocate for their children. But because practical resources are limited and can be hard to find, families often spend time they dont have finding information they need. Thats why PBTFs new website, launched in 2023, is one place where any family impacted by a childs or teens brain tumor diagnosis can find reliable information for every phase of their cancer journey. The new curethekids.org, which also introduced a new look for PBTF, offers robust resource centers in English and Spanish guided by families feedback on the topics that matter most to them. Newly Diagnosed resource center offers information to help parents and caregivers anticipate whats needed in the first few months after their childs diagnosis. Life After a Brain Tumor Diagnosis provides resources to help survivors, family members and caregivers navigate long term effects, concerns about recurrence and progression, and ongoing care in the months and years following treatment. Support for Families focuses on connecting parents and caregivers with information and programs that address the medical, psychosocial, financial, and practical challenges families face. PBTFs new website and visual identity come at a time when diagnoses, mortality rates, and the number of survivors living with pediatric brain tumors long term side effects are on the rise. Its more important than ever for families to have the information they need to make critical decisions for the health of their child, and for supporters to help them along that path. Our new online presence provides families, donors, volunteers, and all other stakeholders invested in patients and survivors well being a place where they can find answers, inspiration, and community and support PBTFs efforts to cure the kids. Form 990, Part VI, Section A, Line 1A The Board of Directors may, by resolution, designate two 2 or more Directors to constitute an Executive Committee, which the Committee, to the extent provided in such resolution, shall have and may exercise all of the authority of the Board of Directors in the management of the corporation except as otherwise required by law. All members of the Executive Committee shall be Directors of the corporation. Vacancies in the membership of the Committee shall be filled by the Board of Directors at any annual or special meeting of the Board of Directors. The Executive Committee shall keep regular minutes of its proceedings and report the same to the Board. Form 990, Part VI, Section B, Line 11B Upon receiving a final draft, the return was presented at a scheduled Board meeting. The return was presented to the full Board by the management of the organization, and a period of time for questions and comments was allowed. Form 990, Part VI, Section B, Line 12C All financial transactions both revenue and expenses are conducted with the knowledge and/or approval of either the President/CEO or the CFO. These transactions are reviewed for any potential conflicts of interest. Any interests are brought to the attention of the Executive Committee. Form 990, Part VI, Section B, Line 15 The Boards Executive Committee determines compensation and benefits for the President/CEO after reviewing the most current Guidestar nonprofit compensation report, other comparable data, scope of responsibility, size of organization, responsibility and budget to determine the reasonableness of the salary. Form 990, Part VI, Section C, Line 18 Recent filings of the Form 990 are available online at curethekids.org, Guidestar, and charity navigator. Form 990, Part VI, Section C, Line 19 The Foundation makes its governing documents, conflict of interests policy, and financial statements available via written request. Additionally, these documents are made available to all state governments that require annual filling of charitable organizations. Form 990, Part XII, Line 2C The process has not changed from the prior year.