2023-05-10T17:14:08-07:00 2022-06-30 812950760 SAX LLP 389 INTERPACE PARKWAY STE 3 PARSIPPANY NJ 07054 990 2021-07-01 521704978 CurePSP Inc CURE 6467251453 1216 Broadway 2nd Floor New York NY 10001 Kristophe Diaz Executive Director 2023-05-10 true Kristophe Diaz 999009999 Michael Schall P02024184 2122682804 3 AAL1 IAL1 FAL1 2021 2023-04-26 12:10:37Z Kristophe Diaz 1216 Broadway 2nd Floor New York NY 10001 3918928 false X www.curepsp.org X 1990 MD To raise awareness, build community, improve care and find a cure for PSP, CBD and MSA. 15 15 12 260 0 6290908 3585545 0 27438 217382 23693 3984 6342039 3806911 1006395 991063 0 1138833 1122055 0 254343 1343135 1348289 3488363 3461407 2853676 345504 8414669 7863202 916524 1105775 7498145 6757427 X To raise awareness, build community, improve care and find a cure for PSP, CBD and MSA. false false 962230 825439 CurePSP is a catalyst for new treatments and a cure. As such, it advances the understanding and seeks treatment and a cure for progressive supranuclear palsy (PSP), corticobasal degeneration (CBD), and multiple system atrophy (MSA). The science that is advanced by CurePSP also benefits the broader field of research in neurodegeneration, including Alzheimers and Parkinsons diseases, in addition to other rare neurodegenerative diseases. Continued on Schedule O 884475 30624 CurePSP advocates for patients, families, and caregivers living with or managing PSP, CBD, and MSA. The goal of CurePSP is to improve the quality of life and patient outcomes and to create a community to increase resilience and accelerate problem-solving. CurePSP does this through the organization of family conferences, caregiver retreats, volunteer development, professional education, online and printed resources, and the dissemination of relevant information on social media. CurePSP supports more than 50 virtual and in-person support groups and has over 250 volunteers providing online, telephone, and face-to-face support worldwide. Continued on Schedule O 784667 CurePSP publishes a library of printed and online educational materials for families, patients, physicians, and other healthcare professionals. These materials are developed in collaboration with CurePSP Centers of Care, a network of hospitals and best-in-class academic centers specializing in treating patients with PSP, CBD, and MSA. CurePSP sponsors professional educational conferences in collaboration with leading institutions to increase knowledge of the disease that will lead to earlier and more accurate diagnosis and better patient care. Several dozen volunteer events annually, supported by CurePSP, further educate the public. CurePSP uses several social media platforms to communicate with its constituents, maintains an online patient and caregiver forum, and produces national webinars, online support groups, and online presentations from clinicians and researchers. 135000 135000 2766372 true true false false false false false false false true true false false false false true false true false false true true false false true false false true true true false false false false false false false false false false false false true false false false false true 23 0 true 12 true false false false false false false false 0 false false false false false false false X 15 15 true false false false false false false true true false false true true true true true true true false false AL AR CA FL GA HI IL KS KY MA MD MI MN MS NC NH NJ NM NY OR PA RI SC TN UT VA WI WV X X Kristophe Diaz 6467251453 1216 Broadway 2nd Floor New York NY 10001 David Kemp President 40.00 0.00 X 200000 0 8383 Kristophe Diaz Executive Dir. 40.00 0.00 X 190885 0 15536 William McFarland Chair 6.00 0.00 X X 0 0 0 Amy Branch Vice Chair 10.00 0.00 X X 0 0 0 Justin Shea Treasurer 2.00 0.00 X X 0 0 0 Lawrence Levien Secretary 1.00 0.00 X X 0 0 0 Everett Cook Thru 622 Director 2.00 0.00 X 0 0 0 Jack Philips Director 5.00 0.00 X 0 0 0 John Sr Burhoe Chair Emeritus 3.00 0.00 X 0 0 0 Larry Golbe Chair SAB 12.00 0.00 X 0 0 0 Ileen McFarland Director 35.00 0.00 X 0 0 0 Brent R Bluett thru 522 Director 3.00 0.00 X 0 0 0 Mana Bhatt Sanghvi Director 2.00 0.00 X 0 0 0 James McClellan Director 1.00 0.00 X 0 0 0 Maggie Orseth Director 1.00 0.00 X 0 0 0 Jessica Shurer Thru 1021 Director 3.50 0.00 X 0 0 0 Alexander Pantelyat Director 2.00 0.00 X 0 0 0 Robert Hand Director 1.00 0.00 X 0 0 0 Andrew Maus Director 2.00 0.00 X 0 0 0 Paul Freeman Director 2.00 0.00 X 0 0 0 390885 23919 2 false true false Kiwi Partners Inc 237 West 35th Street Suite 1101 New York NY 10001 Accounting Services 108041 Regina Printing 260 Wagner Street Middlesex NJ 08846 Printing Services 433298 2 387433 3198112 3585545 0 237008 237008 0 0 0 92391 112017 -19626 -19626 -19626 387433 0 0 0 Other Revenue 3984 3984 3984 3806911 221366 60663 60663 826900 826900 103500 103500 0 324954 242268 50191 32495 0 598358 524668 42218 31472 8749 8315 30 404 121633 101592 12332 7709 68361 56614 7093 4654 0 61530 10830 49750 950 123675 123675 0 0 12957 12957 157630 117417 17713 22500 0 20252 17664 1620 968 153229 124288 9263 19678 0 66686 55329 6867 4490 93313 63007 29329 977 0 5372 5222 150 0 0 3338 2764 347 227 15382 15382 Direct mail 364357 307816 56541 Recruiting and marketing 167203 95469 3214 68520 Other expenses 78098 19969 56735 1394 Postage and Shipping 23353 20596 1515 1242 1914 1481 311 122 3461407 2766372 440692 254343 2166770 1509198 3126783 363665 82874 56899 0 0 0 0 0 130293 144499 206305 202655 4401 3650 2771922 5658237 0 0 0 131626 127054 8414669 7863202 150591 205592 542420 676670 223513 223513 916524 1105775 X 6394463 5663353 1103682 1094074 7498145 6757427 8414669 7863202 345504 -1086222 X false true X true false X 2598398 2845244 3419168 6290908 3585545 18739263 191356 205367 396723 0 0 0 2789754 3050611 3419168 6290908 3585545 19135986 93594 74320 33051 82413 122202 405580 0 93594 74320 33051 82413 122202 405580 18730406 12836 27191 76559 18990 237008 372584 0 12836 27191 76559 18990 237008 372584 0 39664 16637 22737 23693 3984 106715 2842254 3094439 3518464 6333591 3826537 19615285 0.95490 0.96370 0.01900 0.00790 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 397078 -43025 3000 351053 316620 80458 397078 332916 -1296 15000 316620 452650 9116 128850 332916 403444 52826 3620 452650 1.00000 false false false 206305 202655 3650 3650 X 2707732 -1086222 -1086222 3793954 12957 12957 3806911 3448450 3448450 12957 12957 3461407 Part X : FIN48 Footnote The Organization does not believe its financial statements include any uncertain tax positions. Tax filing for the period ending June 30, 2019 and later are subject to examination by applicable taxing authorities. true Europe 0 0 Grant making 93500 Canada 0 0 Grantmaking 10000 103500 103500 Canada Research 10000 Wire Europe Research 93500 Wire 2 false false false false false false Part I, Line 2 - Grantmakers Explanation For Monitoring Use of Funds Outside US Investigators are required to provide four progress reports during the term of the grant: two financial reports and two scientific progress reports. The scientific progress reports are sent for review and approval to the Chief Science Officer and payment may be released only after approval has been given. If progress reports are not determined to be satisfactory, payment may be withheld until the investigator can provide a satisfactory report. false Fundraising Event 387433 387433 387433 387433 true Columbia University 615 West 131st Street New York NY 10027 135598093 50000 0 Research Icahn School of Medicine at M One Gustave L Levy Place Bo New York NY 10029 136171197 75000 0 Research Massachusetts General Hospita 55 Fruit Street Boston MA 02114 042697983 90000 0 Research North Texas Community Fdtn 777 Main Street Suite 2850 Fort Worth TX 76102 752267767 106900 0 Research The Regents of the UCLA 10889 Wilkshire Blvd Los Angeles CA 90095 956006143 90000 0 Research University of Pennsylvania 3541 Walnut Street Philadelphia PA 19104 231352685 100000 0 Research UT Health Science Center at S 7703 Floyd Curl Drive San Antonio TX 78229 741586031 100000 0 Research UT Southwestern Medical Cente Office of Devel PO Box 910888 Dallas TX 75391 756002868 90000 0 Research 4 4 Respite Care Fund 36 30624 Brain Tissue Grants 28 22450 Grantmaker's Description of How Grants are Used Investigators are required to provide two progress reports during the term of the grant. The progress report is sent for review and approval to the Vice President of Scientific Affairs and payment may be released only after approval has been given. If progress reports are not determined to be satisfactory, payment may be withheld until the investigator can provide a satisfactory report. X false false false false false false false false false David Kemp President 200000 6000 2383 208383 Kristophe Diaz Executive Dir. 190885 15536 206421 Form 990, Part III, Line 4d: Other Program Services Description OTHER PROGRAM SERVICES 4: CurePSP organizes and administers a CurePSP Center of Care program, a network of medical centers across the United States and Canada with the goal of connecting people diagnosed with PSP, CBD, and MSA to the best possible care to support disease management and quality of life. The mission of CurePSP Centers of Care is to enhance access to accurate and early diagnosis, state-of-the-art clinical care, and comprehensive support, serve as regional leaders, increase awareness of PSP, CBD, and MSA, optimize standards of care delivery for PSP, CBD, and MSA, and create opportunities for multi-center research initiatives. Launched in 2022, the Collaborative Approaches to Resources, Education, and Support (CARES) grant program funds clinical research projects led by two or more Centers of Care Form 990, Part VI, Line 2: Description of Business or Family Relationship of Officers, Directors, Et William R. McFarland and Ileen J McFarland are husband and wife. Form 990, Part VI, Line 11b: Form 990 Review Process The 990 is provided to the finance committee for review and approval. The form is then provided to the full board of directors for a period to make comments before filing with the IRS. Form 990, Part VI, Line 12c: Explanation of Monitoring and Enforcement of Conflicts The organization has a board approved conflicts of interest policy. Each board member must fill out an annual declaration stating they had no conflicts or identifying the nature of their interested party transactions. Form 990, Part VI, Line 15a: Compensation Review & Approval Process - CEO, Top Management The Board of Directors discussed performance and uses salary data to determine. Periodically the Board also obtains an independent compensation study to determine salary levels. Form 990, Part VI, Line 19: Other Organization Documents Publicly Available Governing documents are made available upon request. Part III, Line 4a CurePSP funding of research and partnerships focuses on (a) the causes and risk factors for neurodegeneration, (b) the discovery or validation of biomarkers and clinical tests that aid in diagnosis, (c) genetic variants that are associated with the diseases, (d) therapies that would prevent, stop, or reverse brain damage associated with the pathological accumulation of protein in the brain, and (e) aiding pharmaceutical companies and research institutions in the recruitment of cohorts for clinical trials and marketing of those trials. In addition, CurePSP partners with world-leading institutions, including the Mayo Clinics brain bank, to provide critical brain tissue samples to researchers and increase access to these fundamental biological resources. Part III, Line 4b CurePSP's Quality of Life Respite grant, supported by the Cherie Levien Quality of Life Fund and many other donors, provides professional in-home care to families in need. As an example of an online resource, CurePSP organizes Ask The Experts interactive webinars during which subject matter experts in the medical and healthcare fields share their advice, knowledge, and research with patients and caregivers. Patient Engagement Program LLC 1216 Broadway New York NY 10001 474679085 Research NY CurePSP Inc false false false false false false false false false false false false false false false false false false false