2025-02-13T11:02:26-08:00 2024-12-31 610567366 CHARLES T MITCHELL CO PLLC 229 W MAIN ST STE 103 FRANKFORT KY 40601 990EZ 2024-01-01 010771966 FIBROMUSCULAR DYSPLASIA SOCIETY OF AMERICA INC FIBR 2168342410 26777 LORAIN RD 311 NORTH OLMSTED OH 44070 BRADLEY DAAR President 2025-02-13 true true Greg Miklavcic CPA P00946625 5022277395 2024 2025-03-06 01:10:19Z X X WWW.FMDSA.ORG X X 145437 X 145428 9 0 0 0 0 145437 50000 69339 7538 3600 1491 21260 153228 -7791 144484 136693 X 145032 137816 145032 137816 548 1123 144484 136693 FMDSA is a public health charity working towards better diagnosis and treatment of Fibromuscular Displasia (FMD). We do this by building awareness of FMD, funding research activities, providing patient support, and educating patients and the healthcare community. In 2007, FMDSA began a data registry with the goal of increasing understanding of FMD. The goals of this registry are to identify characteristics associated with FMD, potential markers of the disease, and commonly used treatment modalities. The Michigan Clinical Outcomes Research and Reporting Program is the coordinating center for the registry. Enrollment in the FMD Registry increased from 4172 patients at the end of 2023 to 4598 patients at the end of 2024. There are 19 active participating sites. Providence Heart Institute joined the registry, and Miami Baptist Health and Seattle Childrens Hospital were closed to enrollment. 50000 Patient support is a large program due to the increase in patients diagnosed with FMD. Due to the demand, we continue to grow the Volunteer Support Network. Volunteers have been identified in the US and internationally. Many hold local meet ups. We offer support through social media platforms, including Inspire, Instagram, and Facebook, where thousands of patients participate. We are active on Twitter, allowing patients and physicians to communicate. We continue to add FMD materials and videos to our website and YouTube channel. We offer FMD materials in multiple languages and work with our international colleagues who offer materials in many languages. FMDSA continues to host and participate in patient Zoom meetings. Patients globally are invited to participate. We help patients educate their family, friends, and healthcare providers about FMD with written materials and videos. We have many valuable resources on our website to help communicate FMD in simple terms, including a Public Service Announcement, as well as in-depth information that can help bridge the gap and build a better relationship between patient and physician. The Program also includes educational work with media outlets, other organizations, journals, speaking engagements, and articles. There is rarely a day that goes by that we are not contacted by a newly diagnosed patient. We have seen the diagnosis rate grow in direct proportion to our programs. We also participate in events such as the Cleveland & Detroit Marathon, which helps increase awareness as well as raise funds to support our programs. We educate medical professionals worldwide at meetings such as the International Stroke Conference, Hospital Led Conferences, Grand Rounds, and Research Meetings. The awareness, education, and research happening around the world is a direct result of what FMDSA started in 2003. In 2024, we participated in in-person meetings, including the American Heart Association Scientific Sessions, VanSCAD in Vancouver, Canada, and the Kentucky Neuroscience Expo. The result of these programs is greater awareness of FMD within the medical community, improved medical knowledge, and the development of critical partnerships that help research activity. We maintain a Research Page on the website containing data published from the patient registry, other researchers and researcher opportunities for patients to participate in. There are also PowerPoint presentations and videos available for healthcare providers. FMDSA has been sponsoring the North American FMD Registry for 16 years. The first participant's data was entered in January 2009. Data from patient experiences is analyzed and used to learn more about the disease. Previously, research identified new genetic variants connected to FMD. (PHARCTR1, ATP281, LRP1, and LIMA1), and in 2024, a key driver gene called UBR4 was discovered. This was a huge advancement. Based on the associated genes, researchers believe that 3-5% of the U.S. population may be affected, The Annual Conference brings together FMD patients, those who have had spontaneous coronary dissection (SCAD), caregivers, and medical professionals. The meeting provides an opportunity for patients to meet others also affected, which is a big draw to the meeting. FMDSA hosts a separate meeting with researchers to discuss updates and current and future research projects. The forum has provided a platform for many research projects, including blood draws, saliva collection, and quality-of-life studies. There is no other meeting in the world where patients have the opportunity to participate in research. For multiple reasons, there was no meeting in 2024, but we participated in and also coordinated Zoom webinars. In 2025, we will be hosting a virtual conference so that patients worldwide have the opportunity to participate. One of our most important charters is to educate patients and families about FMD. We offer educational materials, videos, a research section, news and events, and contacts for patients worldwide. The website is a resource for patients, family members, and medical professionals worldwide. FMDSA is the premier resource of FMD information for the layperson and an excellent place for physicians to easily find medical articles and abstracts. The FMDSA website also offers community events for those wanting to get more involved. FMDSA is the recognized leader in FMD support and resources. 50000 DR BRADLEY DARR President 2.00 0 ROSIE MIKLAVCIC Treasurer 5.00 0 JAZETTE VICEDOR DIRECTOR AT LAR 1.50 0 ROCHELLE DESROCHERS DIRECTOR AT LAR 11.75 0 CATHLIN JAMISON DIRECTOR AT LAR 40.00 0 ALLISON GAINES DIRECTOR AT LAR 2.50 0 PAM MACE EXECUTIVE DIRECTOR 60.00 0 false false false false false false false 0 0 0 false 0 0 false AL AR AZ CA CO FL HI IN KS KY MA MD MI MN MO NC ND NH NJ NM NY OH OK OR PA RI SC TN UT VA WA WI WV ANITA MEYERS 26777 LORAIN RD NORTH OLMSTED OH 44070 2168342410 false false false false false false false false false false false NONE NONE true X 147225 202598 142236 147938 145428 785425 3702 11428 15130 0 0 0 150927 202598 142236 159366 145428 800555 0 0 800555 39 22 11 11 83 0 39 22 11 11 83 0 0 150966 202620 142247 159377 145428 800638 0.99990 0.99970 0.00010 0.00030 X Grants and Similar Amounts Paid In Excess of $5,000.1 | Donee's Name: MCORRP UNIVERSITY OF MICHIGAN | Donee's Address: 24 FRANK LLOYD WRIGHT DRIVE ANN ARBOR MI 48106 | Cash Amount Given: $50000 Other Expenses.1001 Advertising and Promotion $802 Other Expenses.1005 Travel $4726 Other Expenses.1007 Conferences, Conventions, and Meetings $1051 Other Expenses.1012 Insurance $3535 Other Expenses.1 SOFTWARE $4985 Other Expenses.2 SUPPLIES $1910 Other Expenses.4 CREDIT CARD FEES $1287 Other Expenses.5 TELEPHONE $1141 Other Expenses.6 FILING FEES $1131 Other Expenses.7 DUES $390 Other Expenses.8 PAYROLL EXPENSES $160 Other Expenses.10 WEBSITE $52 Other Expenses.11 DONATIONS $50 Other Expenses.12 BANK CHARGES $40 Total Liabilities.1001 Accounts Payable and Accrued Expenses - Beginning $548 Accounts Payable and Accrued Expenses - Ending $1123