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Chase the Cure, Inc.
a 501c3 Nonprofit working to get treatments out of the labs and into this generation of NPC patients
Morgan was diagnosed with Niemann-Pick Disease when she was 17. What makes Morgan happiest, is for everyone to be happy around her. She is part of the peer support team at school where she helps other kids who are suffering from mental health problems and she hopes to someday become a mental health therapist. Morgan loves going on dates, texting and hanging out with her friends at school, like all other teens. | Abby lives in Virginia with her mom, dad, older sister, 2 dogs and 1 kitty. Even though she can't do everything she used to do and travels to DC every two weeks for lumbar punctures, she still gets up each morning, ready to enjoy each day. She loves school and is proud of her accomplishments. She keeps everyone around her laughing with her adorable wit and vivacious personality. | Caleb was born March 4, 2013, and after months of testing, was diagnosed with NPC at 7 months old. He lives in southern Maryland and enjoys playing golf, baseball, and being by the water. Caleb bravely fights NPC everyday with the help of an experimental medication that he receives every 2 weeks through lumbar puncture. He lives each day to the fullest and continues to bring joy to everyone around him. |
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This is adorable Willow, born on 12/27/16. A miracle baby born to a mom with a medical condition; she stopped reaching milestones at age 1 and the NPC Dx came in April 2020. Willow started receiving an experimental drug, and within months, she was thriving again. To the doctor’s surprise, she even regained some abilities she had lost. Today, Willow is a happy child with infectious energy that draws people in. There are challenges ahead that we are ready to face to keep Willow healthy. | Lovely Kamryn brightens the life of her family in Alabama in every way. | Cara Gilmore was born on October 1, 1978. She was diagnosed with adult onset NPC1 in September 2019, after an 18-month diagnostic journey. Prior to her diagnosis, she enjoyed cooking, hiking, and traveling. Cara is resilient, working remotely full-time as a learning consultant. With inspiring bravery, Cara remains hopeful for an approved treatment and cure. |
Handsome 19-year-old JP of Albany, New York is loved by everyone in his community. He is an honorary police officer and assists with the local collegiate lacrosse and basketball teams. He bravely continues his fight against NPC. | Daniel, 36 & David, 34 were best buds from the time they could talk. They had a happy childhood; baseball, golf, basketball & many of the same friends. Daniel started college but the boys remained close. Daniel began to show signs of neurological problems, which we chalked up to growing pains. Over 8 years. we realized that those pains were signs of NPC. David graduated with a Bachelors degree, working full time when psychiatric issues began. The boys fight as a team since the Dx in 2017. | Liam, now 7, was born with end-stage liver disease & Dx with NPC1 in the NICU. At 7 months old, Liam had a liver transplant &10 more surgical procedures in his first two years of life. Now stable, Liam travels to Washington, DC, every 2 weeks to receive an experimental drug via lumbar puncture. Each Liam has to take 15 pills to slow his symptoms and protect his Liver. He is a happy kid who loves friends, family, jokes, singing and dance. He is doing well but needs us to move quickly for a cure. |
Mark is an amazing 40 years young, with incomparable drive and vitality. He battles NPC everyday with a rigorous fitness routine to maintain optimal muscle memory. His contagious smile brings genuine hope and compassion to others fighting the fight against NPC. His determination and positive attitude is inspirational and a wealth of support for his peers and family members. Mark's favorite past time is obviously being a "gym rat" and anything related to Marvel comics. | Devin was the eldest of 4, born 3/20/96. A homebody who loved spending time with family, she had a sweet disposition and was loved by all. She adored Disney & Japanese anime, her left arm being covered in tattoos of her favorite characters! Her all-time favorite was Nightmare Before Christmas. She was diagnosed on 3/17/14, at age 24. She was a trooper and a fighter, enduring trips to the NIH for a trial and countless appointments to help battle NPC. Sadly, Devin lost her fight on May 7 2020 | Dee Reynolds, the youngest of 6, was born Dec. 31,1958. As a military wife, she led a full life with her husband Dan and one child. She worked as a substitute teacher for 10 years and enjoyed making crafts to sell or give away as gifts. Signs of illness began in 2005, as an adult. She was misdiagnosed by multiple doctors; finally, at age 59, she was diagnosed with NPC through the NIH and the Undiagnosed Diseases Network. Dee continues to have a positive attitude as she and Dan fight for a cure |
Alejandra "Alex" Ulrey was adopted from Colombia at 3. We knew she had a heart defect. It was easily corrected after open heart surgery in the US. At 10 years old, Alex began struggling in school & experiencing balance problems. This started our 2+ journey that led to the diagnosis. Pain, dystonia and the inability to walk are some of her challenges. Yet, she still finds a lot to laugh about. Her family was been honored to have her for 28 years and participates in her memory. | Eighteen-year-old Connor lives in Sacramento, CA, with his mom, dad, and brother Christopher. As a child, Connor was a silly, rambunctious, little boy. However, in Dec. of 2011, Connor was diagnosed with Niemann-Pick, a devastating disease, that has robbed Connor of those wonderful attributes. Now that the disease has progressed, Connor has become a young man who can no longer walk independently and is now losing his ability to speak. We must find a cure. Thank you for supporting our effort. | Hayley will always be a beautiful young lady from Illinois. Her enigmatic smile brought joy to everyone; Hayley's expression often said more than her voice! She was diagnosed with NPC on October 17, 2011. An accomplished Special Olympian. She also loved music, especially singing with her dad. Hayley lived life to the fullest until April 3, 2020, bringing joy to her family and friends for twenty years. Her parents fight on in her honor, and for her brother who is waging his own NPC battle. |
This beautiful, blue-eyed girl is Gracie. She is 15 and her smile melts hearts. Gracie loves all things Disney and puzzles. At home in Texas, you can usually find her lounging under fluffy covers in bed, comfy and cozy watching shows or movies. Her giggle is the best. | Rachael was a beautiful, young lady. Before her NPC symptoms appeared, Rachael loved to dance, taking jazz, tap, and ballet. She loved being around people and had a dream of becoming a preschool teacher. She baby-sat and later became a camp counselor. She even got her driver’s license. In 2011, she received her NPC diagnosis. After eight more years of bringing joy to our lives, she passed away on 10/25/18 at age 33. | Chase is the reason this non profit exists. He loved his brother Cam, music and just hanging out. He went through more than any person should have to go through and did it all without complaint. Chase set precedents of care and enabled much younger children to access potential NPC treatments. He is my hero and love. Chase is the reason we keep trying to cure this disease. Born 8/21/09 Retired 12/01/16 |
Thanks For Giving
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