2025-01-23T21:58:23Z 2024-12-31 990EZ 2024-01-01 920449829 PRINCESS HAILEYS HOPE FOUNDATION PRIN 9193571911 17 Cypress Grove Ln SW Huntsville AL 35824 Carlos J Acevedo Treasurer 9193571911 2025-01-23 2024 2024-10-15 13:58:12Z X X X https://princesshaileyshope.org X X 37276 X 34042 3234 616 2618 36660 28957 226 634 29817 6843 28988 35831 X 28988 34233 0 0 1598 28988 35831 28988 35831 The primary purpose of Princess Hailey's Hope Foundation is (1) to raise funds to support pediatric brain cancer research, with an emphasis on Diffuse Intrinsic Pontine Glioma (DIPG)/Diffuse Midline Glioma (DMG); (2) to raise funds to support children fighting cancer, with an emphasis on those who have been diagnosed with DIPG and DMG; and (3) to raise awareness of childhood cancer, which is the leading cause of death by disease in children in the United States. 1. HOPE FROM HAILEY: Our organization awarded three grants in 2024 to advance research and treatment for Diffuse Intrinsic Pontine Glioma (DIPG). 1. A grant of $10,000 was given to St. Jude Childrens Research Hospital in Memphis, TN, to establish the Hailey Acevedo DIPG Research Fund. This fund will support efforts to develop effective treatments for both Diffuse Intrinsic Pontine Glioma (DIPG) and Diffuse Midline Glioma (DMG). 2. A grant of $5,000 was awarded to the DIPG/DMG Research Funding Alliance, administered by the Tough2Gether Foundation in Manhattan, KS. This funding will help support the National DMG Brain Tumor Board, which provides referring oncologists with advice from a panel of DIPG experts on the best treatment options for their patients. This service is a free and confidential resource for families across the United States. 3. An additional $5,000 was granted to the DIPG/DMG Research Funding Alliance to collaboratively fund a grant project led by Dr. Jasper Van der Lugt and colleagues. This project will utilize biospecimens and data from a clinical trial to investigate whether changes in a patient's intestinal microbiome can serve as predictive markers for clinical outcomes in pediatric DMG. The exact number of individuals who will benefit from these grants is currently unknown. 20000 20000 2. HUGS FROM HAILEY: This program seeks to brighten the days of children diagnosed with cancer. Our organization sent a total of 95 personalized Hugs from Hailey care packages to children battling cancer in FY2024. Fifty-four (54) of these care packages and gifts of support were sent to children battling DIPG/DMG brain cancer across the United States. We also delivered an additional forty-one (41) Hugs from Hailey boxes to local childhood cancer patients receiving treatment at the St. Jude Affiliate Clinic at Huntsville Hospital for Women and Children. 7295 7295 3. HOPS FROM HAILEY: Our organization provided gas gift cards to 16 families with children battling DIPG/DMG across the United States who had to travel significant distances (75 miles or more) to receive treatment as part of a clinical trial or expanded access program. 1662 1662 28957 Delia N Acevedo PhD President, Director 40.00 0 0 0 Traci Cappiello Board Member 5.00 0 0 0 Carlos Acevedo Board Chair, Treasurer 10.00 0 0 0 Joseph Limberg Board Member, Vice President 5.00 0 0 0 Christine Carpino PhD Board Member, Secretary 5.00 0 0 0 false false false false false 0 false false 0 0 0 false 0 0 false AL FL Delia N Acevedo PhD 17 Cypress Grove Ln SW Huntsville AL 35824 9193571911 false false false false false false false false false false false false NONE 0 NONE 0 true X 0 0 0 0 8675 36554 34042 79271 0 2077 3234 5311 0 0 0 0 0 0 0 0 0 0 0 0 0 0 8675 38631 37276 84582 0 0 0 0 0 0 0 0 0 0 0 0 84582 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 8675 38631 37276 84582 X 1.00000 0.00000 0.00000 0.00000 Part B, Amended Return This return was amended to correct missing information in Part II-Balance Sheets. The original return did not properly save the End of Year figures and additional information for lines 22-27. Part I, Line 10 1. Hope from Hailey: $20,000 Our organization granted a total of $10,000 to Tough2Gether Foundation (Manhattan, KS), which administers the DIPG/DMG Research Funding Alliance (DDRFA). $5,000 was directed to help fund the National DIPG/DMG Brain Tumor Board, to provide free second opinions and treatment advice to families with a child battling Diffuse Intrinsic Pontine Glioma (DIPG) or Diffuse Midline Glioma (DMG). Another $5,000 was directed to help fund a research grant submitted to DDRFA by Drs. Van der Lugt et al to determine whether changes in the microbiome can serve as predictive markers for clinical outcomes in pediatric Diffuse Midline Glioma. Our organization granted an additional $10,000 to St. Jude Children's Research Hospital (Memphis, TN) to establish the Hailey Acevedo DIPG Research Fund to support their research and development of effective treatments for DIPG and DMG. The number of persons benefitted is unknown. 2. Hugs from Hailey: $7,295 95 Hugs from Hailey care packages and gifts of support (e.g., grocery gift cards, car seat, adaptive equipment/tools for children in disease progression) were sent to children battling cancer. Forty-one (41) of those Hugs from Hailey boxes were given to pediatric hematology and oncology patients at the St. Jude Affiliate Clinic at Huntsville Hospital for Women and Children. Fifty-four (54) Hugs from Hailey were sent to children battling DIPG/terminal brain cancer across the United States. 3. Hops from Hailey: $1,662 Sixteen (16) Hops from Hailey travel gift cards were sent to Diffuse Intrinsic Pontine Glioma/Diffuse Midline Glioma patients enrolled in clinical trials or expanded access programs in the United States. Part I, Line 16 4. DIPG/DMG Awareness Expenses: $ 327.35 These expenses include the cost of 700 PHHF organization wristbands for community distribution and awareness ($115.49) and yearly website and domain fees ($211.86). 5. General Operating Expenses: $306.22 These expenses include our annual Alabama registered agent fee ($249), mandatory registration fee with the Alabama Attorney General ($25), and Venmo/bank fees ($32.22). Part II, Line 24 Other Assets: Inventory remaining at year-end includes (1) Product donation from Tito's: FMW $100; (2) Product prize pack donation by Bogey Bros: FMV $100; (3) Huntsville art donation print by Melly Luna Designs: FMV $15; (4) Jason's Deli Gift Card Donation: FMV $25; and (5) Wish Paper Product Donation (905 packs remaining at ~$1.50/pack): FMV $1358. Total value: $1,598.