Team Alexis's Fundraising Page
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Team Alexis's Fundraising Page
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Hi, my name is Alexis. I am 14 years old and have been diagnosed with a rare condition. 

CLICK HERE TO REGISTER FOR THE 2018 RUN TO UPLIFT

Motto: Never Stop Trying 

Champion Teammate: Karen Quintos

High School Team: Lake Travis Cavalettes

Alexis was born with a visual impairment, and facial weakness. We enrolled her in a study at Boston Children’s Hospital when she was 3 months old. At the age of 7 she was diagnosed with CFEOM (congenital fibrosis of the extraocular muscles), now defined as TUBB3 E410K syndrome.

There are less than 30 known cases in the world. Doctors are still learning a great deal about this genetic condition, but they have linked it to cyclic vomiting syndrome (CVS), Kallman’s syndrome, and peripheral neuropathy. In the last 1 ½ years, Alexis has unfortunately developed the symptoms of cyclic vomiting.

Currently there is no cure, or even great treatment options for CVS, and Alexis often requires IV fluids and meds when she has an episode. Despite all Alexis has been through, she has the most positive attitude and is a kind and caring person. We remain hopeful for more information on this condition and better treatment options, or a cure in the future.

ABOUT 2018 MM - R2U
Supporters
Name Date Amount Comments
Jeff Pierce 09/21/2018 $100.00 Behind you all the way, Alexis!
Jenna Ogundipe 09/20/2018 $100.00 We love you!!!
Dena DeForge 09/16/2018 $100.00 We love you Alexis!
Mary Jeczalik 09/11/2018 $250.00 Alexis,You are a great kid and your family is so proud of you! Your positive attitude and your kindness to others shows all the way to Chicago! George & Mary Ann Jeczalik
Karen Paolino 09/10/2018 $111.00 May a cure or relief come to you sooner than you could imagine
Sarah Mulcahey 09/10/2018 $100.00 You are an inspiration my dear. Love you to the moon and back...and miss you more!
Holly Hannon 09/10/2018 $20.00 Sending love to all of you, Lynne & Bob
Mary Pillsbury 09/10/2018 $50.00 Lynne and Bob, Blessings to you and your family. Love, Mary
Darcie Belisle 09/05/2018 $25.00 We love you sweet girl and think about you and your amazing family all time. Miss you lots!
  Total $856.00  
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