2024-11-07T10:58:28-08:00 2021-12-31 113344284 Piccirillo Lamont & Giammarese LLP 181 W Main Street Suite 101 Babylon NY 11702 990PF 2021-01-01 200284800 THE JAIN FOUNDATION INC JAIN 4258821492 9706 4TH AVENUE NE 101 SEATTLE WA 98115 LAURA RUFIBACH CO-PRESIDENT 2024-11-07 true CAROL A ZOELLER CPA P01454472 6313762300 2021 2024-10-15 13:58:12Z X X 52343433 X X 198 198 198 4253569 4253701 4253569 320000 4573767 4253767 198 527848 527848 304779 304779 91230 91230 5950 5950 5750 5750 35004 35004 51483 96960 96960 1378 1378 1525 1525 229046 229046 1350953 0 1299470 2709094 2709094 4060047 0 4008564 513720 4253767 198 913898 1432858 1432858 63990 66308 66308 28121135 26792645 50842857 1410 1410 1410 29100433 28293221 52343433 7425 7425 X 29100433 28285796 29100433 28285796 29100433 28293221 29100433 513720 132 29614285 1328489 28285796 BERKSHIRE HATHAWAY INC B D 2012-09-28 2021-05-06 2183866 69 2183797 2183797 BERKSHIRE HATHAWAY INC B D 2012-09-28 2021-10-29 2069835 63 2069772 2069772 4253569 59127 59127 59127 74000 74000 X 255 14618 14618 false false false false false false false true true NY true false false false false true JAIN-FOUNDATION.ORG LAURA RUFIBACH 4258821492 9706 4TH AVENUE NE 101 SEATTLE WA 98115 false false false false false false false false false false false false false false false false false false false false false false AJIT JAIN ISLAND DRIVE RYE NY 10580 Director 3.00 0 INDRIMA JAIN ISLAND DRIVE RYE NY 10580 Director 1.00 0 ASHKAY JAIN ISLAND DRIVE RYE NY 10580 CEO 40.00 180642 DOUG ALBRECHT PHD 9706 4TH AVE NE STE 101 SEATTLE WA 89115 CO-PRESIDENT 40.00 173603 LAURA RUFIBACH 9706 4TH AVE NE STE 101 SEATTLE WA 89115 CO-PRESIDENT 40.00 173603 SARAH S EMMONS 2127 33RD AVE W SEATTLE WA 98199 DIR. PATIENT 40.00 119765 LAURIE R LONG 9513 EVANSTON AVE N SEATTLE WA 98103 OFFICE MGMT 40.00 63603 BRADLEY A WILLIAMS 12034 15TH AVE NE 104 SEATTLE WA 98125 DIR. RESEARCH 40.00 121412 NONE While the focus of the Jain Foundation is Dysferlinopathy (LGMD2B/Miyoshi), the resulting scientific advances and collaborations have a broader impact on human health through their relevance to other muscle disorders, degenerative diseases of tissues other than muscle, and normal aging. The Foundation employs a hands-on approach to funding. We closely monitor progress of every project we fund and keep track of results and agreed upon timelines through quarterly detail oriented conference calls with researchers and site visits. We also support internal programs and initiatives. Our goal continues to be to fund all possible approaches to a cure and help with patient diagnosis to ensure that treatments reach those who need them. 0 Contract Research Organizations ($64,956): In 2021, we continued working with Contract Research Organizations (CROs) as an integral part of our therapy development program. CROs are companies that serve the drug development industry and provide specialized knowledge and infrastructure focused on drug discovery, such as robotics and large compound libraries. There are many drugs in development (some even FDA approved) for other diseases that may be useful in Dysferlinopathy. To evaluate their benefit in dysferlinopathy, we need specific assays that predict their effects in our disease. The process of developing assays is tedious, time consuming and difficult to publish, making them unsuitable for researchers at academic institutions. Our strategy is to learn about dysferlin in academic laboratories and then apply what we learn to the development of assays and evaluate drugs at CROs. CRO projects get done at a much faster pace than academic projects, because there is more focused experti 64956 Clinical Trial readiness and Community Engagement ($275,389): Dysferlinopathy is very rare. An important goal of the Jain Foundation is to prepare the dysferlinopathy patient community for clinical trials. There are many aspects to being clinical trial ready including patient identification, community engagement and education, and identification of outcome measures. For patient identification we have a patient registry called the Dysferlin Registry that contains 1060+ individuals we have confirmed to have dysferlinopathy. In addition, we have a diagnosis pipeline that provides access to multiple types of testing. Data from these analyses help provide a definitive diagnosis to those suspected to have dysferlinopathy and helps us be more clinical trial ready. In 2021, we added 67 new confirmed dysferlinopathy patients to the registry. Community engagement and education includes interactions with the patient community, clinicians, LGMD advocacy group collaborations, and Industry and FDA e 275389 Tools for Researchers ($156,304): The Jain Foundation continues to actively identify and fund the development of research tools and resources needed to advance the dysferlin field. The Foundation is committed to developing and providing frequently required reagents, the unavailability of which, slows down research. In 2016, we began working with researchers to develop antibodies using state of the art technologies at Rockefeller University. This work continued into 2017 and 2018. We also built a library of cell lines that are useful to study the disease. Finally, we continue to maintain large colonies of mice at the custom mouse breeding facility at Jackson Laboratories (Maine, US) for use in dysferlin research. Information about these resources is disseminated to relevant researchers through e-mails and through the Foundations website. In 2017, we completed the development of several iPS cells from selected patients, carriers and controls that are now publicly available through a cell 156304 48045419 851344 0 48896763 0 48896763 733451 48163312 2408166 2408166 59127 59127 2349039 2349039 2349039 4008564 4008564 2349039 3611020 3330168 2017222 1654250 1594562 12207222 4008564 0 2349039 1659525 13866747 0 3611020 10255727 3330168 2017222 1654250 1594562 1659525 LAURA RUFIBACH 9706 4TH AVE NE STE 101 SEATTLE WA 98115 4258821492 LRUFIBACH@JAIN-FOUNDATION.ORG SEE FOUNDATION WEBSITE JAIN-FOUNDATION.ORG THERE ARE NO SUBMISSION DEADLINES. THE EXPLICIT GOAL OF THE JAIN FOUNDATION IS TO EXPEDITE DEVELOPMENT OF A TREATMENT OR CURE FOR LGMD2B/MIYOSHI. ANY PROPOSED PROJECT THAT DOES NOT HAVE APPLICATION TO THIS DISEASE WILL NOT BE CONSIDERED. 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