2024-05-06T07:50:54-04:00 2023-12-31 990EZ 2023-01-01 871964096 CTX ALLIANCE NFP % JEAN PICKFORD CTXA 2158010691 454 PRINTER WAY LANSDALE PA 194464035 Shawn Laurie Treasurer 2024-05-06 Shawn Laurie XXX-XX-XXXX 2023 2023-04-26 12:10:37Z X https: ctxalliance.org X X 116435 X 116435 0 0 0 0 0 0 0 0 0 0 0 0 0 116435 0 0 53703 0 205 83421 137329 -20894 42144 21250 42144 21250 0 0 42144 21250 42144 21250 X Education advocacy and promote research for CTX Sponsored the first international scientific meeting for CTX in Israel in August 2023. Gathered the world's experts on CTX to catalyze essential international basic research and clinical collaborations for CTX aiming to advance understanding and enhance outcomes for CTX patients and families. The CTX meeting in Israel was attended by 109 people: 75 in person primarily medical professionals 16 online and 18 local CTX patients from Israel. The medical professional participants in the CTX conference are putting together a book to be published and shared in order to compile the many decades of research and knowledge with the purpose of furthering education about CTX. The publication is estimated to be completed in August 2024. 0 68075 Sponsored and organized CTX sessions during the ULF Scientific Symposium & Family Conference in Itasca IL in June 2023.Thirteen professionals attended 4 remotely and 11 patients family members.The presentations were recorded and are on our website to facilitate patient family professional education efforts. 0 10706 Sponsored booth at American Academy of Pediatric Opthalmology AAPOS meeting in April 2023. Educated medical professionals on symptoms of CTX particularly pediatric cataracts. 0 1319 The CTX Alliance sponsored three webinars during 2023. The first webinar subject was the Neurology of CTX on March 6 2023 and had 35 registered participants. The second webinar was May 23 2023 and was an "Ask the Docs" session. This second webinar had 24 registered participants. The third webinar was December 5 2023 with Mirum the pharmaceutical company that purchased the rights to produce Chenodal. Leadership and physicians from Mirum spoke to the CTX community regarding the successful clinical trial that was completed and answered questions from the participants regarding the FDA approval process as well as questions about getting the medication that is so necessary for their loved ones. This third webinar had 38 registered participants. 0 375 80475 Bobbi Blanchard Co-President 1 0 0 0 George Bryce Co-President 1 0 0 0 Andrea DeBarber PhD Co-Vice President 2 0 0 0 Robert Steiner MD Co-Vice President 0.5 0 0 0 Shawn Laurie Treasurer 1 0 0 0 Neel Odedara Secretary 0.5 0 0 0 Shannon DeLaMar Board Member 0.5 0 0 0 Hollisa Rosengrant Board Member 0.5 0 0 0 Sue Stewart Board Member 0.5 0 0 0 John Wolf Board Member 0.5 0 0 0 Jean Pickford Executive Director 12 52521 0 0 false false false false false 0 false false false false PA Jean Pickford 454 PRINTER WAY LANSDALE PA 194464035 2158010691 false false false false false false false false false false false NONE NONE true X 0 0 20100 68099 116435 204634 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 20100 68099 116435 204634 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 204634 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 20100 68099 116435 204634 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED Part I, line 16 | Other Expenses:, Amount:| Software & Web expenses, $2893| Credit Card Fees, $60| Conference Meeting Expenses and Travel, $80468|