By
nboice on
September 1, 2010
The Global Genes Project Aims to Battle Rare Disease Through The ‘Vote4Hope’ Campaign and Pepsi Refresh Competition Over 15 Million Children in America Are Estimated To Suffer From 7000 Unique Rare Diseases; Children Unite As ‘Ambassadors of Hope’ To Win $250K Pepsi Grant For The Global Genes Fund DANA POINT, CA – September 1, 2010 [...]
Posted in News | Tagged Ataxia Telangiectasia, Autosomal Recessive Polycystic Kidney disease, Batten disease, battens disease, Branchiootorenal Syndrome, Canavan disease, charcot marie tooth syndrome, childrens rare disease network, cystic fibrosis, Dravet Syndrome, Duchenne Muscular Dystrophy, fibrous dysplasia, global genes fund, Global Genes Project, Hutchinson–Gilford Progeria, joubert syndrome, mitochondrial encephalomyopathy, Neimann-Pick Type C, nicole boice, Niemann Pick Type C, NORD, pepsi, Pepsi Refresh, Rare Disease, Rett Syndrome, SMA, Spinal Muscular Atrophy, subcortical band heterotopia, tay-sachs, Tay-Sachs and Type 2 Gaucher’s, vote 4 hope, vote for hope |
When my daughters were diagnosed with autism at age 2, I stumbled across the essay “Welcome To Holland” by Emily Perl Kingsley, as all newly diagnosed parents eventually will. The essay parallels having a special needs child to arriving in Holland when you planned a trip to Italy. As many do, I took the essay [...]
By
nboice on
September 3, 2009
Mitochondrial disease is a life-threatening metabolic disorder that affects the body’s ability to convert food into energy. The mitochondria are a separate strand of DNA, which exist in every cell except red blood cells, and are responsible for producing 90% of the body’s energy. Individuals with mitochondrial disease can suffer devastating effects from a simple [...]
Posted in Family Life, Featured | Tagged Children, Children with Rare Disease, childrens rare disease network, dna, financial stress, metabolic disorder, mitoaction, mitochondria, mitochondrial disease, mitochondrial encephalomyopathy, neurological disease, orphan disease, Rare Disease, rare disorders, twins |
