MEET OUR FAMILIES
Rachael Kaflowitz was a beautiful, young lady. Before her NPC symptoms appeared Rachael 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
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.
Chase is the reason this non profit exists. He loved his 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
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.
Osama, born 4/14/16, is our bright, shining star. He has brought love and hope into our lives. At 16 mos, he was diagnosed with NPC, a degenerative, fatal disease that will slowly take him away from us. At 22 months he began VTS-270 treatments with Dr Berry Kravis at Rush Hospital. Although, we have seen many improvements, such as walking with a walker and beginning to speak, it is not a cure. We need to continue raising money for research, so a cure can be found. Thank you for donating.
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.
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!
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.
Handsome 15 year old 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.