Global Down Syndrome Foundation

“Line 2 - related party information among officers three of the members of the board of directors have a family relationship, and one board member has a business relationship with the members who have a family relationship.”

“SEE ABOVE.”

“Form 990 is reviewed by senior management and distributed by email to the board prior to filing.”

“The board discloses conflicts of interest on an annual basis.”

“Michelle sie whitten is an employee of the anna and john sie foundation (ajsf). While ajsf pays her salary, the amount paid for work performed for global activities is recorded in global's records as personnel costs and is reported in part vii, column d and column f. This is also reported as a contribution from ajsf to global. The portion of her salary and benefits related to work performed for ajsf is not included in part vii. In determining her compensation, the trustees of ajsf along with third party professionals (the ajsf committee) review comparability data to determine the appropriate compensation amount.”

“Approval for compensation of all other staff is delegated to the ceo. The ceo bases the compensation on comparability studies for similar positions in similarly sized non-profit organizations. Total compensation is included in the annual budget and reviewed by the board at the annual board meeting.”

“Louisiana, maine, maryland, massachusetts, michigan, missouri, north dakota”

“The governing documents, conflict of interest policy, and financial statements are made available to the public upon request.”

“Global, pursuant to its articles of incorporation and bylaws, engages in fundraising activities for its affiliates (e.g. The linda crnic institute for down syndrome, anna and john j. Sie center for down syndrome). On occasion, global generates donations that are gifted directly to such affiliates. These donations are not reported as contribution revenue on the form 990, part viii. While these amounts are not reflected in the form 990, it is important to note these amounts are captured in the global annual report and footnoted in the audited financial statements. Consideration of the contributions to affiliates is important to accurately reflect the efficacy and scope of global's efforts. The amount donated directly to affiliates in 2025, through july 31, was 2,123,000.”

“To significantly improve the lives of people with down syndrome through research, medical care, education and advocacy. An important part of this mission is to support the global affiliate organizations that we helped establish and continue to fundraise for. Global and our affiliates work together to elongate life and dramatically improve health outcomes to ensure people with the condition can reach their true potential. Global affiliates include: crnic institute for down syndrome, alzheimer's & cognition center, sie center for down syndrome, and global adult clinic. Another important part of our mission is to engage in government advocacy that leads to transformative increases in government funding for down syndrome research and medical care which in turn will create a pipeline of young talent dedicated to this population. Because of global's work, scientists are developing better methods to understand how the triplication leads to a much higher incidence of certain diseases (for example alzheimer's disease and autoimmune conditions) and yet protects people with down syndrome from other diseases (for example solid tumor cancers and certain type so heart attack and stroke). In addition, medical professionals and families now how health guidelines and clinical trials that are leading to longer and healthier lives.”

“Research and clinical care: down syndrome is when a person is born with three copies of chromosome 21 instead of the usual two. Before global was established, down syndrome was the least funded genetic condition by the national institutes of health (nih) and very little was being done to increase research or create evidence-based medical care guidelines. -global established the first down syndrome research and medical care institute in our country - our affiliate, the crnic institute for down syndrome. -global established one of the largest down syndrome medical centers in the world serving 2,500+ children with down syndrome from 35 states and 11 countrys - our affiliate the sie center for down syndrome. -global successfully lobbied and advocated for the establishment of the trans-nih down syndrome research program called "include- and have led to the renaissance of down syndrome research today. -global successfully lobbied and advocated for the national institutes of aging to launch their longitudinal ad-ds biomarker grants. -global created the first evidenced-based global medical care guidelines for adults with down syndrome published in the journal of american medical journal (jama) -global established the be beautiful be yourself fashion show, the world's largest fundraiser benefitting people with down syndrome and the acceptability gala, the first down syndrome research fundraiser in washington dc, -global organized the: first down syndrome research summit in the us in 2006 headed by nobel laureate tom cech first down syndrome research conference at nih in 2010 focused on databases, biobanks & registries which resulted in nih creating the dsconnects down syndrome registry first down syndrome & alzheimer's disease workshop in collaboration with the alzheimer's association and nia in 2012 first down syndrome & alzheimer's disease research grants co-funded by global and the alzheimer's association. Global is delivering on our mission through groundbreaking research with our affiliates. For example we have: - discovered that down syndrome is an immune system disorder and we have conducted two clinical trials testing drugs that normalize the immune system and have had profound results; we are currently organizing a 3rd such clinical trial - hold an nih include clinical trial grant aimed at effectively treating down syndrome regression disorder - discovered that people with down syndrome are hypoxic - discovered three distinct phenotypes in down syndrome that could lead to more effective "precision medicine" - supported the first clinical trials testing promising alzheimer's drugs in people with down syndrome - published "the" behavioral guidelines for children with down syndrome - created a rubric for test children with down syndrome for dysphagia - published groundbreaking natural history studies in infantile spasms, physical therapy, neurology and more.”

“Translation services 37,827 0 0 other professional fees 113,072 287,759 36,221 total 150,899 287,759 36,221”

“The board treasurer, president & ceo, outsourced accounting firm, and certain members of management meet with the external auditors on an annual basis to review the financial statements in detail.”