“SCR 104, Recognizes Mitochondrial Disease Awareness Week”
SACRAMENTO: In late August, the State Legislature took action to unanimously pass a resolution designating the third week of September every year as Mitochondrial Disease Awareness Week. Senate Concurrent Resolution 104, authored by Senate Republican Leader Bob Huff (R-Diamond Bar), and co-authored by Senator Ted Gaines (R-Roseville) calls attention to the fact thatevery 30 minutes a child is born who will develop Mitochondrial Disease by age 10, yet the debilitating medical condition most people have never heard of, can dramatically shorten a child’s life. Mitochondrial Disease is not –unfortunately just one disease – it usually includes an umbrella of 100-200 disorders, which is why it is so difficult to diagnose and treat. …read more
Financial impact on families dealing with progressive and likely terminal diseases, such as Mitochondrial Disease, is enormous. The special care required to keep these kids thriving is extremely expensive – often exceeding insurance limits. Trips across the country, special supplements, therapies, equipment and nutrition are often not covered by insurance. Furthermore, families with children that are affected by Mitochondrial Disease seldom have two incomes, as one parent is typically needed to administer care at a very high and frequent level.
This organization was created by a family who has first hand experience with the impact of Mitochondrial Disease. By spreading the word about the disease and the families that are afflicted, we can provide hope and strength to those who need it most.