2025-03-17T02:00:05Z 2024-12-31 990EZ 2024-01-01 812058803 VWM FAMILIES FOUNDATION INC VWMF 2033437596 7 LANTERN LN GREENWICH CT 06831 Nicholas Buck Co-Founder and Operations 2033437596 2025-03-17 true 2024 2025-03-06 01:10:19Z X vwmff.org X X 55074 55074 0 0 0 0 0 0 0 0 0 0 0 0 0 0 55074 0 0 0 3500 0 1480 180762 185742 -130668 174034 0 43366 172684 43366 0 0 0 0 172684 43366 0 0 172684 43366 Vanishing White Matter disease VWM is a very rare neurological condition that destroys myelin the brains white matter In doing so it permanently affects transmission of brain signals to the rest of the body VWM primarily affects children and is untreatable incurable and terminal In 2016 the VWM Families Foundation was formed to raise awareness of VWM to raise money for research and to support families living with VWM within the United States and worldwide 0 0 Allyson Buck Co-founder President 6.00 0 0 0 Nicholas Buck Co-founder Operations 1.00 0 0 0 Brett Hollberg Board Member Patient Advocacy 3.00 0 0 0 Danuta Skwirut Board Member 2.00 0 0 0 Stefanie Rohring Board Member 0.00 0 0 0 false false false false false false false 0 0 false CT Nicholas Buck 7 Lantern Ln GREENWICH CT 06831 2033437596 false false false false false false false false false false false NONE 1 NONE true X 302121 302121 1 1 89319 56801 33963 66964 55074 302121 89319 56801 33963 66964 55074 302121 302121 89319 56801 33963 66964 55074 302121 1 1 0 0 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED Schedule O: Other expenses include payments and grants made in line with the primary charter of the VWM Families Foundation, to support clinical research into a treatment or cure for the disease. - Grant of $119618 made to the global research initiative to find a cure or treatment for Vanishing White Matter Disease, run out of the VU University Amsterdam Medical Center under the leadership of Dr Marjo van der Knaap. - Grant of $50000 made to a separate research initiative to find a cure or treatment for Vanishing White Matter Disease, run out of the University of Utah under the leadership of Dr Joshua Bonkowsky. - Payment of $5000 represents a refund to a donor, who made the donation in error. - Remaining expenses include materials to promote ongoing fundraising activities including supplies stationery and printing, and also fees and commissions paid for the use of online fundraising applications (QGiv, Facebook, etc.).