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Saturday, March 30, 2013

   5th Annual Tri It Get Fit Youth Triathlon & Fun Run

Saturday--May 4, 2013

                                   Sponsored by Girl Scout Troop 758

Reverse Triathlon:  Run, Bike, Swim

Temple Terrace Tri It Get Fit Triathlon  (TTT)

 “Tri It Get Fit” is the PERFECT location to kick off your 2013 triathlon season or “tri” your first triathlon!  A triathlon may seem overwhelming but if you can swim, bike and run a short distance YOU CAN DO IT!  The triathlon is open to youth of all ages (starting at 5 years old) and adults and includes a closed course run, followed by a scenic bike around Temple Terrace Country Club Golf Course and finishing with a heated pool swim at the Temple Terrace Recreation Center. 
We are also adding a NEW EVENT for the community this year--a 1 mile FUN Run/Walk Event for those individuals who would like to participate in a fun, healthy event and support our efforts without committing to a triathlon!! 
Join us to celebrate youth fitness and “Tri It Get Fit”.  Troop 758 will be holding severaltraining sessions in March and April for youth and adults to train and become familiar with how to transition during a triathlon.  Training dates will be sent via email and will be available on our website.
Girl Scout Troop 758 would like to invite you to participate in Girl Scout Troop 758’s 5th Annual “Tri It Get Fit” Triathlon at the Temple Terrace Recreation Center, Saturday, May 4th, 2013.  Last year we had over 130 participants and hope to well exceed this number this year.  Girl Scout Troop #758 is hosting this event to promote youth fitness and to raise awareness of the fastest growing participatory sport in the world, the triathlon.  This year will continue our component of the race for physically challenged and special olympic athletes. 

                    Challenge your employees to race as a team!!

Event Sponsorship Opportunities

The troop will be obtaining Event Sponsors to cover the costs of the triathlon (renting the Temple Terrace Recreation Center, hiring police officers, etc.).  The proceeds from the triathlon will be deposited into Girl Scout Troop #758’s treasury, a portion of which will benefit several local community projects including the “Miracle for Megan Garrett Irrevocable Trust”.    To learn more about Megan’s touching story go to
Troop 758 has donated $13,000 of their proceeds from the past four triathlons to Megan Garrett's Trust and $2800 to "Clouds of Hope" for the All Accessible playground in Temple Terrace.  For more information about "Clouds of Hope", please visit
                                            Sponsorship Form (click here)


After years of genetic testing we got results yesterday that confirms a gene mutation. Mitochondrial Disease genes are hard to detect - sometimes you never know what nuclear DNA genes are affected - only have mitochondrial DNA results. This gene is the primary cause of Megan's Mitochondrial Dysfunction.

We will be doing some other tests now that we have this info....this was definitely long awaited. Cant say it is good news, but it was necessary news.

Santavuori-Haltia/Infantile CLN1/PPT disease
Santavuori-Haltia/Infantile CLN1/PPT Disease is part of a group of progressive degenerative neurometabolic disorders known as the neuronal ceroid lipofuscinoses (NCLs). The NCLs are characterized by an abnormal accumulation of lipopigaments, which are subtances combined of fats and proteins within the brain’s nerve cells, eyes, skin, muscle, and within other tissues throughout the body.

NCL I is known to result from deficient activity of an enzyme called palmitoyl—protein thioesterase-1 (PPT-10). The gene coding for this enzyme has been named CLN1.

Symptoms of Santavuori-Haltia/Infantile CLN1/PPT Disease begin between six months and 19 months of age. During ages of six to 19 months, a delay in mental and muscular activities appears at the same time when the affected child begins to lose the mental and physical skills he/she had acquired. A small head, seizures, an inability to coordinate voluntary muscular movements, decreasing muscle tone, muscle spasms, and visual impairments are additional symptoms. As neurological complication progress, immobility, spastic and involuntary movements, and a lack of response may also occur.

Santavuori-Haltia/Infantile CLN1/PPT disorder is an autosomal recessive disorder.

Life Expectancy for Santavuori-Haltia/Infantile CLN1/PPT disorder is five years of age or younger.

An MRI scan of the brain typically shows severe atrophy of the cerebral hemispheres and cerebellum.

There is no cure for Santavuori-Haltia/Infantile CLN1/PPT disorder. Treatment is limited to reducing or controlling the symptoms of this disorder by routine consultation with the patient’s neurologists, ophthalmologists and genetic counselors.