Registration for Firework 5k
Update: Registration Form Now Available!
The registration form is now available by clicking the Go for it button.
If you don't like something, change it. If you can't change it, change your attitude. Don't complain.
Im glad youre mine. The flowers smell better, the sun shines brighter, even the stars are brighter, everything is better because you are in my life. The world is a better place because you are in it.
There are only two ways to live your life. One is as though nothing is a miracle. The other is as though everything is a miracle.
What lies behind us and what lies before us are tiny matters compared to what lies within us.
It's not the years in your life, but the life in your years.
Firework 5k Information
New: The Hannah Mcclellan Tribute Page at Sanford Burnham is now available!
Hannah McClellan is a 13 year old girl currently residing in Idaho Falls, Idaho. Hannah is diagnosed with CDG 1a (Congenital Disorders of Glycosylation) with R141H/T237M mutations. An early scan revealed cerebellar hypoplasia, a near non-existent cerebellum, with symptoms that include reduced muscle tone, mental retardation and poor fine motor skills, to name a few. Despite this, Hannah has never allowed her limitations to dictate what she may do. Using her Rifton walker and AFO's for assistance, she has actively practiced Tap dance and performed in annual recitals where she received her five year award. She is currently a Cheerleader, both for her Junior High school and for an assistive all-star squad. Her cheerleading will be profiled in the upcoming issue of Idaho Falls magazine May/June issue.
To learn more about Hannah, click the Details button below.
Congenital Disorders of Glycosylation (CDG), formerly called carbohydrate-deficient glycoprotein syndrome,are a group of inherited disorders that affect a process called glycosylation Glycosylation is a process by which all human cells build long sugar chains that are attached to proteins. Together the proteins and their attached sugars are called glycoproteins. Glycoproteins, have many very important functions in the human body and are required for the normal growth and function of all tissues and organs.
To learn more about CDG, click the Details button below.
Scientists investigating CDG (who are called glycobiologists) have identified 19 types of CDG each with its own unique defective enzyme identified. While CDG is a rare disease, a great deal of new scientific information indicates that it may be more common than originally thought. There are approximately 700 cases of all types of CDG worldwide, it is probably only a few percent of the total patients. It is safe to say that the entire group of CDGs is severely underdiagnosed. CDG patients are often misdiagnosed early on because their symptoms resemble other generic disorders.
To learn more about the Freeze Lab click the detail button below.