Set it For Tobin Sand Volleyball Tournament

Set it For Tobin Sand Volleyball Tournament

August 10th, 2019

Thank you to the teams who came out in support of Tobin Hansen!

Congratulations to our Division Champions:
- Dan & Sam, Junior Doubles Division
- 2 Bump Chumps, Adult Doubles Division

Congratulations to our Grand Champions (overall winner between junior and adult divisions):
- Dan & Sam, Junior Doubles Division 


So what is Canavan Disease?

Canavan disease is a rare inherited genetic disorder that damages the ability of nerve cells (neurons) in the brain to send and receive messages. This disease is one of a group of genetic disorders called leukodystrophies. Leukodystrophies disrupt the growth or maintenance of the myelin sheath, which is the covering that protects nerves and promotes the efficient transmission of nerve impulses.
In Canavan disease there is a mutation of the ASPA gene on chromosome 17. The ASPA gene produces an enzyme called Aspartoacyase. Aspartoacylase is responsible for breaking down N-Acetyl Aspartic Acid, or NAA in the brain.

Children born with Canavan disease usually have extremely high levels of NAA which can be detected by urinalysis. But the most accurate way to definitively test for Canavan disease is through blood DNA testing. There are over 70 identified mutations of the ASPA gene and even two different mutations will result in a child born with Canavan disease.

Neonatal/infantile Canavan disease is the most common and most severe form of the condition. Affected infants appear normal for the first few months of life, but by age 3 to 5 months, problems with development become noticeable. These infants sometimes do not develop motor skills such as turning over, controlling head movement, and sitting without support. Other common features of this condition include weak muscle tone (hypotonia), an unusually large head size (macrocephaly), and irritability. Feeding and swallowing difficulties, seizures, and sleep disturbances may also develop. Some children will develop more skills in these areas depending on the presentation of the disease in that individual.

The life expectancy for people with Canavan disease varies and can depend on the quality of care as well as what mutation or mutations the affected child is born with. Children who are born with the most common severe form of the disease and can live into their teens or twenties with excellent care. There are many factors that determine how long a person can live with Canavan disease.

For more information you can visit https://www.canavanresearch.org/about.html

Ways to donate!

PayPal: Rockwell.meagan@gmail.com

Venmo: @SavingTobinGrace

GoFundMe: https://www.gofundme.com/save-tobin-grace

Tobin's Time shirts:
https://www.bonfire.com/store/tobins-time/

Canavan Disease Awareness shirts:
https://www.bonfire.com/finding-a-cure-for-canavan-disease/