Handsome JP of Albany New York is loved by everyone in his community. He is an honorary police officer assists with the local collegiate Lacrosse and Basketball teams. Learn more and connect with more efforts in the NPC community via the link below.	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. Like other 26 year olds plenty of smiles are at the ready for cute guys! Thank you for your support!
	Kristen was born healthy October 1, 1997. She loves soccer & dancing around the house, loved pranks on her siblings & going on family vacations. When Kristen was 8- 9 she was having difficulties in school, but attributed it to a learning disability. Kristen was also never able to balance to ride a bike. In January 2010 a neurologist diagnosed NPC. March 2010 took us to the NIH for a drug study, we've been battling since. Kristen is an amazing brave young woman and always has a smile!
Fifteen-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.	Nineteen year old Hayley from Prospect Heights Illinois has been fighting against NPC for seven years now. She is an accomplished Special Olympian and loves music.
Meet adorable, 11-year-old Tannah Gibbs. from KY. She was diagnosed with NPC in November, 2017 and began receiving Cyclodextrin via LP in February, 2018. Tannah is a very brave, outgoing girl who enjoys life to the fullest and loves to watch TV, play Shopkins, and spend time with friends. Thank you so much for giving.	Kailey Florkiewicz, born 8/18/2003. She was a happy, healthy, active child, participating in soccer, gymnastics, dance and Girl Scouts. She loved family gatherings and parties. By fall of 2011, Kailey was no longer keeping up with the kids on the soccer field. She was also struggling at school. We had her tested for learning disabilities, to no avail. Seizures were suspected in 12/2011. NPC was confirmed 2/26/13. Kailey is the strongest, bravest girl! We will be strong and brave with her!
Jeg, our 5 year old boy diagnosed with Crohn's 11/2017 and NPC 12/ 2017. On Rare Disease Day he had his 1st LP of Cyclodextrin. He is the happiest, funniest, smartest little boy we know; capturing hearts with his smile and laugh. He loves driving big sister Claire crazy, drag racing, hot rods, dirt bikes, monster trucks, the Chicago Cubs and Bears, spending time with friends, family, swimming. He is an honorary police officer. We will live life to the fullest as a family and never give up.	Rachael Kaflowitz was a beautiful, young lady. She didn't show the psychological symptoms typical of adult onset NPC until middle school. She was misdiagnosed for 12 years. She loved to dance; took jazz, tap, & 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 10/25/18
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