Building awareness and communities to support and find treatments for Rare Diseases and Genetic Conditions
Aidan was having some vision problems starting in late March 2011. He was doing really well in school. The only problem was he was reading and writing really close to the page. Two ophthalmologists we had visited with said he had 20/20 vision. The latter explained how [...]
In October of 2009, Dakota was diagnosed with Wolman’s disease. Wolman’s disease belongs to a group of diseases known as Lysosomal Storage Disorders and is a rare genetic disorder caused by a deficiency of an enzyme known as lysosomal acid lipase (LAL or LIPA). This [...]
It was December 28, 2008 when we saw the lump in his throat. It was small, but very obvious. Someone finally took me seriously that something was seriously wrong and he was admitted to the hospital. On New Years Eve, Joseph went in for a biopsy. [...]
Testicular cancer is rare, and bone marrow transplant services are difficult to access for advanced stage tumors.
Our 4 year old son Joseph Colton has Niemann-Pick disease type A/B. The Niemann-Pick (NP) diseases belong to a family of 40+ inherited disorders identified as lysosomal storage diseases or LSDs. There are two distinct sub-families of Niemann Pick diseases. NPA and NPB diseases are [...]
Our 4 year old son Joseph Colton has Niemann-Pick disease type A/B. The Niemann-Pick (NP) diseases belong to a family of 40+ inherited disorders identified as lysosomal storage diseases or LSDs. There are two distinct sub-families of Niemann Pick diseases. NPA and NPB diseases are [...]
