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5K in Mahwah to Honor Late Joubert Syndrome Child

Event is happening at Darlington Saturday.

5K in Mahwah to Honor Late Joubert Syndrome Child
The following was submitted to Patch by the Mary Therese Rose Fund. 

We are so excited to announce our 3rd annual Mary Therese Rose Run.  It will be held this Saturday at Darlington County Park in Mahwah. 

This will be a morning of family fun activities, 5K, prizes, and food. If you are not a runner, you will still enjoy the day.  There will be a fishing derby for kids sponsored by Ramsey Outdoor Store after the race.  

Joining us this year will be national marathoner, Beth Deloria. TeamUP Captain Beth Deloria founded the national grassroots Get Back Up.  Deloria was diagnosed with foot drop in 2004 after a spinal injury that resulted in paralysis of the muscles of her left foot and ankle.  Over the last two years, while running in more than 50 events, it was the inspiring stories shared by others that led to the formation of TeamUP, the first and only national foot drop team.  

“The kind of psychological blow that I experienced is what thousands of people are facing as they come to terms with the paralysis of foot drop,” says Beth Deloria.  

As a marathoner unwilling to give up an integral part of her life to foot drop, Deloria spent countless hours researching her condition and a solution that would make running possible again. She found one, and her goal is to make sure no foot drop sufferer is alone behind a computer desperately searching for answers.  

5K Fee:

$30 2013 USATF-NJ Athletes save $3(if postmarked by May 4th)

Event Schedule:

8:30am – 9:45am Goodie Bag, bib# & chip pickup

9:30am–12:30pm Vendor Fair

10:00am 5K Run/Walk start

11:00am Mary’s Mile (for children 12 and under)

11:30am Awards

Awards For:

• Top 3 overall male and female 5K winners

• Top 3 largest teams (Teams must be comprised of 5+ runners/walkers)

• Over 60 Individual Age Group Medals 7 Yrs. through 80+ (10 Yr. Age Groups for 5K)

• ALL 5K Runner/Walkers receive T-shirt & Goody Bag while supplies last

The committee thanks our proud sponsors: Tri-State Timing, Nicolosi Fine Foods, Suburban General Insurance, Applebee’s, CMC Adaptive Seating, Glen Rock Savings Bank to name a few.

Mary Therese Rose Crilly was born in 1998 with Joubert Syndrome a rare genetic disorder which left her profoundly disabled. Though physically limited, Mary’s limitless love and courage inspired those closest to her to establish a fund in her name to benefit special needs children being treated out of the Kireker Center for Child Development. 

The Fund provides needed therapies and equipment that are so often denied by insurance companies because of lifetime insurance benefit limits or simple denial of reasonable claims.

Each year The Mary Therese Rose Fund helps families pay for needed equipment like orthotics, braces, and standers. It also funds activities such as horseback riding that are therapeutic and brighten the lives of these special kids. It is the goal of The Mary Therese Rose Fund to help these special children reclaim some of the simple joys of childhood denied them by their disabilities.  

Though Mary passed away in 2003 her brief life was filled with joy. In gratitude, and to honor her memory, supporters of the Mary Therese Rose Fund continue to work so that other special children can experience some of childhood's simple joys as Mary did.  

“Mary’s Kids” sincerely appreciate any and all donations and/or help that you can find it in your hearts to provide.  Help us to keep our mission alive and provide these beautiful children the simple joys of childhood.  Please feel free to email us, MTRF5k@gmail.com, for further information.  Your tax deductible contribution benefits local special needs kids through The Mary Therese Rose Fund.  

For more information on the Mary Therese Rose Fund, and to sign up for the walk, go to  www.marythereserose.org

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