2024-11-04T11:16:28-07:00 2023-12-31 990 2023-01-01 850767017 MOG PROJECT INC MOGP 3019635911 19414 Haven White Ct Gaithersburg MD 20879 Julia Lefelar Executive Director 3019285491 2024-11-04 1 2023 2024-10-15 13:58:12Z The MOG Project Julia Lefelar 19414 Haven White Ct Gaithersburg MD 20879 242665 0 X www.mogproject.org X 2020 MD To raise awareness, educate doctors, patients and caregivers, advance research through expert collaboration and fundraising, and provide support and advocacy for the MOGAD community. 5 0 0 40 0 0 82754 237314 0 0 0 4257 0 448 82754 242019 97 50017 0 0 0 0 0 0 3363 43464 173922 43561 223939 39193 18080 144390 162470 0 0 144390 162470 X To raise awareness, educate doctors, patients and caregivers, advance research through expert collaboration and fundraising, and provide support and advocacy for the MOGAD community. 1 0 13368 0 Education for MOGAD patients/caregivers and medical professionals is one of the pillars of our strategic plan. Not only do we create these resources, but The MOG Project maintains a website providing patients, caregivers and healthcare professionals in the MOGAD community these educational materials vetted by expert medical professionals, access to research studies by medical institutions and The MOG Project itself, clinical trial information, support group information and registration, as well as community outreach information. In order to provide patients with the latest in the continually changing research in MOGAD, we use the website to provide quick access to podcasts from our YouTube channel and links to information from our collaborative partners. The website also supports an online store, providing awareness merchandise for purchase. In addition, the website provides blog space for patient stories, podcast summaries, news, announcements and events. With MOGAD being a rare neuroimmune condition, patients are unlikely to meet another patient in their area. This website is their portal to finding others with the disease for support and learning about the medical professionals who treat the disease aas well as gaining an education on the disorder. We are commited to these patients and plan on maintaining the website for years to come. We benefit over 5000 people who have found our website worldwide, mostly in the US. In 2023, we added a video-based FAQ page and more professional presentations to educate patients. We also did more work on accessibility and website SEO improvements using a professional web developer. 138444 0 0 We were the major financial sponsor for the 2023 MOGAD Summit in Boston, MA for the Neuroimmunology Clinic and Research Laboratory at Massachusetts General Hospital. This was a medical education and research sharing meeting designed to bring together the MOGAD research community to share and learn about recent findings from each other. This involved, travel, venue, meals and other expenses related to the summit. 50067 0 0 The MOG Project provides research grants to centers of excellence in MOGAD research that work on understanding of this rare neuroimmune disorder. The organization does this through the Research for Rare program which consists of two types of grant offerings: The Apollo grant and the Accelerator Grant. The Apollo Grant provides funding to develop hypotheses and gather seed/pilot data to support and strengthen the submission of a future same subject proposal allowing investigators to better secure greater funding from larger organizations. Our grants are intended to support the advancement of medical knowledge and understanding of this rare disease leading to better diagnosis, targeted treatments, and eventually a cure. The Accelerator Grant provides for architecture, infrastructure, and technology funding to be used in support of any future MOGAD research projects. These grants are awarded as part of a vigorous RFA process similar to that done in reputable institutions such as NIH. 2769 0 0 We attend various conferences to learn about MOGAD, get researchers interested in MOGAD research and to teach patients about the disease. There are travel-related costs, conference registration and booth fees associated with these activities. 497 0 0 We provide awareness gear, printed patient information (brochures and flyers) to MOGAD patients upon request and at all external venues visited. The website also offers MOGAD gear which helps bring our patient community together, raises funds for some of our administrative costs, and brings awareness to the disease. We offer a variety of MOG-related merchandise and ship to customers who order from our website. There is some cost in creative fees for the design of the merchandise as well as all that goes into selling the gear. 514 0 0 We currently have 3 zoom-based support groups often visited by expert medical professionals in MOGAD. Our support group leaders volunteer their time to help patients connect to the care they need bring MOGAD patients and caregivers together to share advice based on their personal experience with the disease. We do not offer medical advice during these sessions, but patients can learn how to self-advocate to receive the best care possible from their own medical team, including what questions to ask their doctor and about the latest news The MOG Project has to offer concerning research and new findings in the MOGAD Community of researchers. 300 people are regularly signed up for our yearly sessions. Our expert visitations by MOGAD clinicians are on a volunteer basis and occur quarterly throughout the year for all 4 support groups. 0 0 0 The MOG Project affects research by offering clinicians and researchers patient survey data from MOGAD patient volunteers around the world. These surveys target key areas that ignite ideas and propel research forward. We use an IRB approved survey tool and incur some expenses in creating data for researchers. 3780 0 0 205659 1 1 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 1 0 0 0 0 0 0 1 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 1 0 0 0 0 0 0 0 0 0 0 0 0 X 5 0 1 0 0 0 0 0 0 1 1 0 0 1 1 1 0 0 0 0 0 0 MD X X Julia Lefelar 3019635911 19414 Haven White Ct Gaithersburg MD 20879 X Amy Ednie President 2 0 X X 0 0 0 Julia Lefelar Executive Director 8 0 X X 0 0 0 Peter Fontanez Director/Treasurer 2 0 X X 0 0 0 Andrea Mitchell Director 2 0 X X 0 0 0 Jen Gould Director 2 0 X X 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 237314 0 237314 0 4257 0 0 4257 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 1094 646 448 448 0 0 0 0 0 0 0 242019 448 0 4257 X 25000 25000 0 0 25017 25017 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 3860 497 0 3363 586 0 586 0 8979 8904 75 0 0 0 0 0 0 0 0 15555 3131 12424 0 0 0 0 0 2769 2769 0 0 0 0 0 0 0 0 0 0 0 0 0 0 1310 0 1310 0 990 Filing and State Filing 318 0 318 0 Bank Fees and Service Charges 404 200 204 0 140141 140141 0 0 223939 205659 14917 3363 144390 81889 0 80581 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 144390 162470 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 X 144390 162470 0 0 144390 162470 144390 162470 18080 0 0 0 0 0 X 0 0 0 X 72709 82754 236219 391682 1094 848 1094 3036 0 0 73803 83602 237313 394718 394718 4258 4258 0 0 0 0 4258 4258 0 0 73803 83602 241571 398976 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 1 South Asia 0 0 Grantmaking Fabienne Brilot from University of Sydney, Australia was awarded our Apollo Grant for $25K as part of our Research for Rare Program. This grant paid for a pediatric study to examine the use of the P4-epitope in predicting relapsing MOGAD. 25017 Europe (including Iceland and Greenland) 0 0 Fundraising UCB Biopharma sponsored the MOGAD Summit in Boston in September of 2023. In addition, they sponsored 3 of our podcasts (MOGCasts) in 2023. 85000 Europe (including Iceland and Greenland) 0 0 Fundraising F-HoffmanN-La Roche gave us sponsorship funding for the MOGAD Summit in Boston in September of 2023. In addition they sponsored 3 podcasts (MOGCasts) in 2023. 85000 0 0 195017 0 0 0 0 0 0 Schedule F, Part I, Line 2 The MOG Project has an assigned officer to monitor all grants awarded, including foreign grants. Rules for award and deliverables are as follows: Period of Award is 1 year from date of award notification. Extension requests up to an additional 6 months will be entertained and, if approved, will apply to all intended respondents. Deliverables: The awardee should present the data at The MOG Project Medical Advisory Board Meeting at the end of the award peroid, with extensions requested by email. Data from the project must be used to apply for a larger grant funding opportunity, either in government, a larger non-profit institution, or a commercial entity such as a biotechnology company. Those who do not follow these rules cannot apply for future grants with The MOG Project. The signed award contract includes the following: We expect you to advise us of any duplicative funding of this project by another agency or any potential conflicts that may arise from your acceptance of this grant. Awardees are prohibited from making decisions about the use of The MOG Project funds that may have an impact on their personal interests, such as consulting or other businesses and the businesses or employers of their family members, collaborators, future or past employers, or others as it is a conflict of interest. The MOG Project shall be notified prior to the distribution of any press release or other public announcement concerning work funded by this award and shall be given the opportunity, at least seven working days in advance. The MOG Project's support shall be acknowledged in all scientific publications, including abstracts, and in patent documentation. The award payment will be made as described above and require the following Terms and Conditions: The deliverables, due December 31, 2024, are listed below. 1. Final Report of the Research Project 2. Final Report of Expenditures 1 Northwestern University 633 Clark Street G-547 Evanston IL 602081112 362167817 25000 0 Request for Application Steven Miller, PhD and team were awarded a grant to do a study to: (1) determine the effects of preventative tolerance induced by the PLG nanoparticles encapsulating the rhMOG protein versus the immunodominant MOG35-55 peptide on clinical rhMOG-EAE and on the resulting MOG-specific autoimmune responses. (2) To determine the effects of therapeutic tolerance induced by PLG nanoparticles encapsulating rhMOG protein versus the immunodominant MOG35-55 peptide on clinical rhMOG-EAE and accompanying MOG-specific immune responses. Future Objective: It is anticipated that the results will propel future human clinical testing of their novel PLG nanoparticle immune tolerance-inducing platform for treatment on MOGAD and other autoimmune disease. 1 1 Schedule I, Part I, Line 2 The MOG Project has an assigned officer to monitor all grants awarded, including foreign grants. Rules for award and deliverables are as follows: Period of Award is 1 year from date of award notification. Extension requests up to an additional 6 months will be entertained and, if approved, will apply to all intended respondents. Deliverables: The awardee should present the data at The MOG Project Medical Advisory Board Meeting at the end of the award peroid, with extensions requested by email. Data from the project must be used to apply for a larger grant funding opportunity, either in government, a larger non-profit institution, or a commercial entity such as a biotechnology company. Those who do not follow these rules cannot apply for future grants with The MOG Project. The signed award contract includes the following: We expect you to advise us of any duplicative funding of this project by another agency or any potential conflicts that may arise from your acceptance of this grant. Awardees are prohibited from making decisions about the use of The MOG Project funds that may have an impact on their personal interests, such as consulting or other businesses and the businesses or employers of their family members, collaborators, future or past employers, or others as it is a conflict of interest. The MOG Project shall be notified prior to the distribution of any press release or other public announcement concerning work funded by this award and shall be given the opportunity, at least seven working days in advance. The MOG Project's support shall be acknowledged in all scientific publications, including abstracts, and in patent documentation. The award payment will be made as described above and require the following Terms and Conditions: The deliverables, due December 31, 2024, are listed below. 1. Final Report of the Research Project 2. Final Report of Expenditures Form 990, Part III, Line 2 Please see Form 990, Part III, Line 4 for a full description of Program services. Form 990, Part VI, Section A, Line 2 The President and Executive Director are family members. Form 990, Part VI, Section B, Line 11b The completed form is is initially reviewed by our Finance Director and Executive Director. Once the review is complete and any changes needed are made, the form is emailed to our President and Treasurer for review. Once that review is completed, the form is submitted. Form 990, Part VI, Section C, Line 19 We provide the forms from each tax year on our website here: https://mogproject.org/donate/ Conflict of interest policy is available upon request by contacting the organization at info@mogproject.org Form 990, Part IX, Line 24e These expenses were related to the MOGAD Summit in Boston as part of our program to devote funding to medical professional education and research collaboration. These epenses also included video production of a Q&A Panel for patient education. An extension was filed and accepted/approved on 4/11/24.