https://www.miracleofhudson.org/our-crash-landing daily 0.75 2025-03-21 https://images.squarespace-cdn.com/content/v1/6544e0559f1c47170e704372/bde49db4-7776-42ce-b2cb-eade74469681/shutterstock_1996174901.jpg Our Crash Landing - Our “Sully” Takes Over The miracle in this story was our Captain. Her name is Susan. A perfect stranger for only seconds. She rose from stranger to family as fast as Flight 1549 descended onto the river. Susan was our “nurse navigator” at Children’s National Hospital in Washington, DC. She was the first to greet us the morning we entered the intimidating confines of Children’s Hospital. Intimidating because your infant was in need of such care in the first place. Susan checked us into appointments; challenged doctors in a respectful but necessary way; coordinated specialists (we had 14 at our height) appointments to be all during one day; translated doctor speak into a language that a school teacher and investment manager could understand; and explained to one doctor what another had said, just to name a few. In short, Susan gave us an informed voice in an overwhelmingly informed room. She served as an emotional counselor to us, as we grieved. Susan advocated for Hudson as if he were born to her. A deep seeded desire to ensure others feel comforted, supported, empowered, and guided by their own nurse navigator became our family mission. https://images.squarespace-cdn.com/content/v1/6544e0559f1c47170e704372/4b24bba0-ee14-4f2a-bd2d-4d679c7317af/image-asset.jpg Our Crash Landing - The Takeoff January 15, 2009. US Airways Flight 1549’s Captain Sully instructs his passengers to brace for impact as they will be landing IN the Hudson River. Imagine the thoughts consuming every soul on that aircraft. Will I survive? Why didn’t I miss this flight? Why THIS flight? Will I drown? Will the plane explode? I hope my family & friends know I love them so much! If I survive, will my life be the same? You know the happy ending to this story. Captain sully miraculously landed this giant aircraft safely on the Hudson River where boaters then heroically responded and rescued every life onboard. https://images.squarespace-cdn.com/content/v1/6544e0559f1c47170e704372/1699012704328-YDYKBMLSPAW6PA85XRZD/Paper_Plane-e1614954575991-2048x225.png Our Crash Landing - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/6544e0559f1c47170e704372/1699012693894-TFM5SQYL19SSZQV9OEFX/unsplash-image-FwdZYz0yc9g.jpg Our Crash Landing https://images.squarespace-cdn.com/content/v1/6544e0559f1c47170e704372/1704838362940-SHUZ0TOFVRSKZ51KDVCO/shutterstock_2132995981.jpg Our Crash Landing https://images.squarespace-cdn.com/content/v1/6544e0559f1c47170e704372/1704834836134-F3LMUWYFUALN7ASJOCBU/shutterstock_2248725621.jpg Our Crash Landing https://www.miracleofhudson.org/home daily 1.0 2024-11-26 https://images.squarespace-cdn.com/content/v1/6544e0559f1c47170e704372/24e6ef23-a30b-4158-846d-3d50ef56d3c0/Mommy+%26+Hudson.jpg Home - Remove Barriers to Care MOH understands that rare diseases create unique challenges for patients, families, and medical teams. These include coordination issues, delayed diagnoses, geographic barriers, and high costs of uncovered tests, all while families face overwhelming grief. Our focus is on addressing these obstacles to improve care and outcomes. https://images.squarespace-cdn.com/content/v1/6544e0559f1c47170e704372/2fb0b498-d4ce-4176-8c62-e46785bd4ad9/Hudson+smiling+bubbles.jpg Home - Improve Patient Outcomes By enhancing coordination, timely access to resources, and removing barriers to care, we aim to improve patient outcomes. This includes faster diagnoses, efficient treatment plans, and education programs to raise awareness. These efforts drive the changes needed for better care and outcomes. https://images.squarespace-cdn.com/content/v1/6544e0559f1c47170e704372/0ab4a4b8-b4a1-4c04-ab5d-f525dc8360b1/MoH_AirplaneB.png Home - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/6544e0559f1c47170e704372/6f4199be-3046-463d-bad8-d592b403cb6c/Mac+Head+Wrap.jpg Home - Reduce Time Delays One in ten Americans lives with a rare disease, yet it takes an average of five years to receive a diagnosis—far too long. Our goal is to shorten this timeline by streamlining screenings, testing, and treatments. This ensures families get timely answers and access to care within critical treatment windows. https://images.squarespace-cdn.com/content/v1/6544e0559f1c47170e704372/572dda84-0114-48c7-9460-d820735e9ac1/Mac+Therapy.jpg Home - Improve Care Coordination When a rare disease baby is born, there is no dedicated doctor to guide the family. Our Rare Disease Medical Advocate coordinates care among pediatricians, specialists, and therapists to streamline appointments and ensure clear communication. This support helps families navigate the process efficiently and have the best possible experience. https://images.squarespace-cdn.com/content/v1/6544e0559f1c47170e704372/1704838545949-H5U98G77KZ59G3SMT3PO/image-asset.jpeg Home https://images.squarespace-cdn.com/content/v1/6544e0559f1c47170e704372/1710355554579-VOY5GGW6VLLL51B0A4GU/Hudson+Sleeping+Oxygen+NG+Baby+Chair.jpg Home https://www.miracleofhudson.org/our-needs daily 0.75 2025-03-21 https://images.squarespace-cdn.com/content/v1/6544e0559f1c47170e704372/ffd30ff1-c0a0-4f2f-bf71-389db856869f/shutterstock_1284992806.jpg Our Needs - Volunteers As part of our fundraising efforts, we host annual events. We are constantly in need of volunteers to share their time, expertise and compassion with our supporters and donors. https://images.squarespace-cdn.com/content/v1/6544e0559f1c47170e704372/380cbf06-d9c8-4218-b085-3bfb521ab92c/shutterstock_1463202677.jpg Our Needs - Partnerships We have partnered with Children’s National Medical Center and its Rare Disease Institute to serve their patients that are born or introduced after birth. We need partnerships with other Children’s Hospitals across the country to make a meaningful impact. https://images.squarespace-cdn.com/content/v1/6544e0559f1c47170e704372/0ab4a4b8-b4a1-4c04-ab5d-f525dc8360b1/MoH_AirplaneB.png Our Needs - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/6544e0559f1c47170e704372/138776c7-484e-42f3-a6a1-d6ceb81e956e/MoH_AirplaneA.png Our Needs - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/6544e0559f1c47170e704372/a7f824bf-7822-4308-a1de-b724a117f9c9/shutterstock_346218056.jpg Our Needs - Community 1 out of 10 American’s live with a rare disease. Some are more noticeable than others. We need to remember that these individuals are very much understanding of your approach or lack thereof. Instead of staring from a distance or quickly ushering kids away from these people, we emplore you to engage the parents, communicate your curiosity and encourage your kids to say hello and interact with our community. https://images.squarespace-cdn.com/content/v1/6544e0559f1c47170e704372/347fa720-73be-41ad-9248-db371dda6f11/shutterstock_2287781517.jpg Our Needs - Funds We have been championed with raising $3M in order to launch this one-of-a-kind service to the most vulnerable of humankind; rare disease babies. https://images.squarespace-cdn.com/content/v1/6544e0559f1c47170e704372/d2acc0e1-77b7-4ce0-a238-54bddeb4a4aa/shutterstock_1733404961.jpg Our Needs - Connections If you know of a family who has welcomed a rare disease baby into this world and their home, we’d love to meet them. We’d love to learn about their experience, what worked and what was a challenge. This is how we continue to improve the overall outcomes and experiences for the rare disease babies born tomorrow. https://images.squarespace-cdn.com/content/v1/6544e0559f1c47170e704372/1706647603321-WH3WLWGTSCYU0R1S4VQY/shutterstock_1319982029.jpg Our Needs https://www.miracleofhudson.org/contact-us daily 0.75 2024-01-30 https://images.squarespace-cdn.com/content/v1/6544e0559f1c47170e704372/1704838178699-QCHDK5DHR969V2XJA0DL/shutterstock_2059112279.jpg Contact