The Naspghan Foundation

What it reported doing in 2024

Children with cholestatic liver disease : diagnostics, medical management of chronic pancreatitis in children: maximizing treatment and improving outcomes, removing dieting from diet therapies in pediatric gi, the what, how and ifs of optimizing early childhood growth and long-term outcomes, children with cholestatic liver disease: pruritis management, naspghan fellows toolbox website, bowel sounds episodes on early nutrition. Cholestatic jaundice is a rare presentation of various hepatobiliary, metabolic, and genetic disorders . Cholestasis typically presents in theneonatal/ infantile period but can also present late in older children or even adults . Early diagnosis and appropriate management of the underlying condition are of paramount importance for optimal prognosis . Diagnosis of cholestasis needs an array of investigations including blood tests, imaging, genetic testing, and invasive procedures like liver biopsy . Liver biopsy is one of the central crucial investigations done in evaluating children with cholestasis, however, can be associated with complications including bleeding . Understanding when to use a liver biopsy in children with cholestasis along with its limitations is extremely important to gain the maximum benefit out of an invasive procedure. Over the last decade, the growth in genetic techniques and the identification of new genes leading to cholestasis in children haveevolved significantly and have led to the shrinking of the unidentified etiologies. This webinar addresses the rapidly evolving field of genetic cholestasis and when to perform a liver biopsy, its utility, and limitations. Medical management of chronic pancreatitis in children : maximizingtreatment and improving outcomes chronic pancreatitis (cp) in children is associated with significant morbidity and poor quality of life . The incidence of cp in children has risen over the past few decades and is approaching that seen in the adult population . Cp is an inflammatory disease resulting in irreversible changes in the pancreas including acinar cell loss, fibrosis, ductal changes, and calcifications . Patients with cp may suffer from abdominal pain and complications of exocrine pancreatic insufficiency (epi) and diabetes mellitus . Medical management of chronic pancreatitis in children : maximizing treatment and improvingoutcomes brings together leading experts to discuss how to ensure that childhood cp is recognized early and its sequalae treated promptly . Removing dieting from diet therapies in pediatric gi obesity was declared an epidemic by the cdc in the 1990s, yet significant and sustained weight loss continues to be problematic for americans as a population . Critical factors are often overlooked when addressing obesity such as racial discrimination, disability status, and environmental factors. In conjunction, "weight stigma", or bias that devalues people with larger bodies, can cause increased morbidity and mortality, independent of bmi. As a response, a movement is taking place, known by several names including "anti-diet or "intuitive eating". This is an inclusive movement that recognizes one's size as part of his or her identity as much as race, national origin, and sexuality. It considers social, economic, and physical barriers to obesity, rather than assuming lack of willpower or education are thecause . It's about recognizing "diet culture and dismantling the anti-fat and pro-thin messages that infiltrate society . This informative and interactive webinar helps healthcare providersrecognize weight stigma and promote a positive relationship with food, particularly in patients with gi-related health conditions and those following therapeutic diets. The what, how and ifs of optimizing early childhood growth and long-term outcomes : part one understanding normal growth and development is critically essential for quick recognition and intervention for deviations in childhood growth and nutrient intake practices associated with increa

Financial Efficiency

• Mission deployment rate: 72.7%; rating input score 73
• Program expense ratio: 92.7%; rating input score 93
• Fundraising efficiency: $44.23 raised per $1 spent on fundraising; rating input score 76; 76th percentile among comparable filings

Transparency & Controls

• Consistency checks: 92.3%; rating input score 92; 10th percentile among comparable filings
• Pay-setting controls: 1 of 6 controls in place; rating input score 17
  • Compensation committee: Missing
  • Independent consultant: Missing
  • Other Form 990s reviewed: Missing
  • Written employment contract: Missing
  • Compensation survey or study: Missing
  • Board or committee approval: Pass
• Foreign activity oversight: Limited
• Grant itemization coverage: 96.9%; rating input score 97; 32nd percentile among comparable filings
• Major donor itemization: Yes; rating input score 100
• Related-party transparency: Limited

Accountability

• Independent voting board: 100%; rating input score 100; 63rd percentile among comparable filings
• Governance controls: 7 of 8 controls in place; rating input score 88
  • Conflict-of-interest policy: Pass
  • Whistleblower policy: Pass
  • Document-retention policy: Pass
  • CEO compensation review process: Fail
  • Other executive compensation review process: NotApplicable
  • Form 990 shared with the board: Pass
  • Board meeting minutes documented: Pass
  • Audit committee oversight: Pass
  • Independent financial-statement audit: Pass

Sustainability

• Operating margin: 18.3%; rating input score 75; 75th percentile among comparable filings
• Total-asset coverage ratio: 4.43; rating input score 82; 82nd percentile among comparable filings
• Liabilities to assets ratio: 0.21; rating input score 42; 42nd percentile among comparable filings
• Officer compensation ratio: 4.3%; rating input score 58; 58th percentile among comparable filings

Growth

• Program expense growth: 4.5% per year; rating input score 100; 37th percentile among comparable filings
• Revenue growth: 4.9% per year; rating input score 100; 40th percentile among comparable filings
• Asset growth: 6.2% per year; rating input score 100; 41st percentile among comparable filings