Mila'S Miracle Foundation

“Julia vitarello adam vitarello president vice chair family relationship”

“A copy of form 990 will be provided to each member of the governing body, via email or at a board meeting, prior to submission to the internal revenue service.”

“Members of the board are asked to disclose and present on potential conflicts to the full board of directors during regularly scheduled meetings. Meetings adjourn to an executive session, as noted in the minutes, at which time the remaining directors review, discuss and vote to determine if a conflict of interest exists and if any further action needs to be taken. Directors and officers are asked to sign an affirmation statement annually and conduct periodic reviews to ensure the organization operates in a manner consistent with charitable purposes and does not engage in activities that could jeopardize its tax-exempt status.”

“The mmf board of directors (excluding julia vitarello) reviewed and approved julia's salary (as ceo), maggie's salary (as key employee), and chris' salary (as contract worker) via written consent (in lieu of meeting) that last took place on august 16, 2024. The approved actions via written consent were then documented in the minutes of the next board meeting which took place on september 11, 2024. Leading up to the approval, the nonfamily members of the mmf board of directors participated in private discussions to determine a basis for julia's salary, and seperate discussions took place between julia and the other mmf board members to determine a basis for maggie and chris' salaries. The process used to establish reasonable compensation was determined by several factors including, but not limited to: census data and compensation reports for comparable industry positions, annual cost of living adjustments, job description, annual performance review, org budget.”

“Governing documents are available upon request.”

“The mission of mila's miracle foundation is to find and fund paths to a cure for batten and other life-threatening neurological disorders. Families in this community have been pivotal in raising the necessary funds and awareness. Together, with our incredible scientists and partner organizations, we hope that our work will improve the prognosis of batten disease and other neurodegenerative diseases. Through our fundraising - which includes grassroots efforts, individuals and family foundations, and grants - our foundation work has focused on the following program initiatives to date: the expansion of individualized medicines; clinical trials & programs, including an antisense oligonucleotide (aso) clinical trial, a cln7 gene therapy trial, and a batten & neurodegenerative disease clinic; and basic science research for batten disease, including a pediatric cell atlas of batten pathobiology and therapeutic response.”

“Expansion of individualized medicines - at present, the foundation is focused on helping to grow the new field of individualized medicines, which mila's story first opened up. Alongside mila's doctor (dr. Timothy yu) and his team at boston children's hospital, we are working collaboratively with leaders in the field to rethink the drug development process so we can safely and rapidly scale n-of-1 treatments and address the global health crisis of rare genetic diseases. Our "mila to millions" initiative is prioritizing two key areas to successfully bridge the gap between the need for treatments, the existing technology to develop them, and the missing infrastructure to expand access to them. Our strategic pilots in the uk and us are aimed at providing new models of access to individualized medicines, and our impact campaign is aimed at shifting the public mindset to influence the critical decisions needed to pave this pathway forward. Our hope is to go from mila to millions, making individualized medicines accessible to many more children across thousands of rare diseases.”

“Basic science research - to date, the foundation has funded three (4) basic science research projects for batten disease in the us, europe and australia. By supporting scientists working to crack the cln7 gene (as well as other variants of batten disease) through meetings with researchers and physicians, and grant funding to labs working on biomarker discovery and data collection, we are learning more about this devastating childhood condition with the hope of improving future treatment options. Early research projects funded by the foundation have led to findings and results published in the journal of clinical investigation, which demonstrate that an "aav9/mfsd8 gene therapy is effective in pre-clinical models of neuronal ceroid lipofuscinosis type 7 disease". Additionally, donated tissue samples, funding, and patient-partnered research support provided by the foundation led to the creation of the first-ever pediatric cell atlas of batten pathobiology and therapeutic response. The foundation's work on the cell atlas is still ongoing and subsequently led to the launch of the "little legacies" brain donation program which is being overseen by the foundation in partnership with boston children's hospital, the university of maryland, the brain donor project and the chan zuckerberg initiative.”

“Clinical trials & programs - to date, the foundation has funded two (2) clinical trials and one (1) clinical program for children with batten disease: 1.) an antisense oligonucleotide (aso) clinical trial - the foundation partnered with boston children's hospital to fund, develop, and administer milasen, the first-ever individualized medicine designed for one person. Led by the pioneering scientist/neurologist, dr. Timothy yu, this aso treatment, which mila received for three years, targeted her individual disease-causing mutation and proved that novel treatments similar to this could be developed and deployed to treat children affected by a number of other rare genetic disorders. 2.) a cln7 gene therapy trial - together, with renowned gene therapist dr. Steven gray, the foundation began the work on a novel gene therapy direct to the brain for children with mila's variant of batten disease, cln7. This promising approach replaces the broken gene with he correct one in a one-time shot into the cerebrospinal fluid. The trial was developed in partnership with ut southwestern, aashi's hope and batten hope, and launched in spring 2021. 3.) neurodegenerative disease clinic - the foundation helped fund and launch a batten & neurological disease clinic at children's hospital colorado in 2020. The purpose of establishing this center of excellence was to provide families with children affected by neurodegenerative diseases a place to receive specialized multidisciplinary care all in one visit during a single appointment conducted annually and/or semi-annually, based on the child's personalized care plan. Simultaneously, research data is collected to help better understand these diseases and eventually inform future treatment paths.”

“Administration expenses:profe 0 4,489 0 professional fees - pgm:other 100,000 0 0 employee expenses - pgm:compe 56,000 0 0 professional fees - pgm:video 70,000 0 0 professional fees - pgm:photo 11,381 0 0 professional fees - pgm:equip 2,617 0 0 trial costs - pgm:basic scien 2,000 0 0 total 241,998 4,489 0”