About Salon Gianna
Salon Gianna was created to raise money to help find a cure for Congenital Disorders of Glycosylation. (CDG). The concept, of this unique and inspiring salon, is to create an ongoing fundraising platform to help in the research of CDG. By creating a business, we can continuously raise money, as well as awareness, for CDG research. All proceeds from Salon Gianna will go to The Rocket Fund at the Sanford-Burnham Medical Research Institute. Research into rare and neglected diseases is tragically under-funded. The lack of understanding of these diseases is extremely heartbreaking when children are suffering. Support of The Rocket Fund will enable further cutting-edge investigation of rare and neglected childhood diseases, including research into other causes and efforts to devise new medicines for possible treatment.
Congenital Disorders of Glycosylation (CDG)
Children born with congenital disorders of Glycoslyation (CDG) have inherited mutations in genes that directs Glycosylation. Glycosyation is the process by which cells coat proteins with sugars. Lack of sugars disrupts cell growth, differentiation and communication. CDG is actually a group of many diseases, each characterized by a mutation in a different gene. In the past decade, mutations in 38 different genes were identified as causes of CDG, and new genes are still being discovered. Symptoms of CDG vary widely. Some examples include developmental delays, digestive problems, seizures and low blood sugar. New diagnoses are increasing every year as doctors become more aware of this family of diseases and as scientists identify more genes involved
Gianna was a beautiful healthy baby at birth. At age 6 months she started having seizures and was diagnosed with the most severe form of epilepsy. She had several hundred seizures a day, unable to eat or drink by mouth, aspiration issues, hypotonia (low muscle tone), and severe developmental delay. Doctors had little hope for Gianna and many did not think she would live past age 5. We were told that whatever is wrong with Gianna is so rare, that it is most likely undiscovered and to give up and focus on having other children. As parents, we did not give up in finding her diagnosis.
At age 2, she was diagnosed with CDG (subtype unknown). Gianna continues to surpass Doctors expectations. Her inspiring determination and incredible hard work with so many different therapies (hyperbaric oxygen, feeding therapy, intensive suit therapy, CME therapy, Acupuncture and much, much more) has helped in her progression. Gianna still has intractable seizures daily, but can now eat and drink without the aide of a feeding tube. She plays with toys, and is constantly reminding us that anything is possible and to never give up.
Salon Gianna thanks you for your business
The Rocket Fund will be used to advance pioneering research projects on a whole range of children’s diseases at the Sanford-Burnham Medical Research Institute.
If you would like to make a Tax deductable donation to “The Rocket Fund for CDG Research”,
please ask a sales associate for information or visit their website at:
Please specify “The Rocket Fund for CDG” with your donation so our cause will be noted
Salon Gianna; Located at 1529 19th Street, Bakersfield Ca 93301 is a full service hair salon and spa in Downtown Bakersfield catering to all of your beauty needs. We carry Enjoy, Moroccan Oil, and Eminence Skin care from hungry. Come treat yourself!