Informant Podcast: Where Family is First!

Saving Reed!

MW Players, I need your help. I need you all to vote for a team so they can raise money to cure a disease that kills children.

The Disease
Sanfilippo syndrome (MPSIIIA) affects about 1 in every 70,000 births.  The children are born missing an enzyme needed to breakdown MPS (a substance made by the body), so it gets stored up in the cells and cannot be removed.  The children look and act normal the first few years of their lives, but as more and more MPS accumulates in the cells of the brain the children show signs they are unable to learn and continue progressing.  The extra MPS in the cell causes it to expand until the cell can hold no more and it dies.  The disease is progressive and the child become more afflicted each year.  The children stall out in cognitive abilities at the age of a toddler usually unable to potty train or take care of themselves at all.  For a while the child can maintain only what they already know.  In the final stage of the disease the brain damage is so sever they start to die slowly.  The children actually unlearn how to speak, walk and even swallow. The average life expectancy of a child with Sanfilippo syndrome is less than 15 years of age.

Please watch this short video: http://dfw.cbslocal.com/2011/06/23/your-vote-could-help-save-north-texas-boys-life/

Go Vote
Gene therapy has shown a lot of promise lately and has been successful in curing small animals with Sanfilippo syndrome.   The total cost to bring a gene therapy viral vector to clinical trial in humans is over $1.2 Million dollars.  Team Sanfilippo has the opportunity right now to win $250,000.00 in the “Vivint gives back project” if they get the most votes by Aug. 27th.  Please vote once a day for Team Sanfilippo and help save wonderful children that have a condition that is solvable with funding!

Voting is done via Facebook:

  1. Visit: http://bit.ly/vote4reed
  2. The first time you must click, “like” the page, login, allow, and scroll to the bottom of the page and hit the vote button.
  3. The next day, you just click the login button, and scroll down and hit vote
  4. Please vote everyday until Aug. 27th.

Thank you all for helping me find a cure!

[MIG] Chainsaw Chester
Godfather

  • Thank you for sharing this information about my son Reed. Every vote does count and I appreciate people being willing to take a min. of their time to click to vote and save my child and others just like him! Thank you!!

  • Thank you so much for spreading this!! My daughter Amelia also has MPSIIIA and she is 6 years old. We all want to find a cure for this so our babies can live and be happy and healthy. One vote a day from people is all we’re asking! THank you so much!!!! It means the world to us

  • I can’t thank you enough for sharing this. My son Logan has this terrible disease. We are working so hard to fund a cure for our children!

  • I am honored to help you all. Your strength and sacrifices are nothing short of remarkable. We are going to beat this.

    ~Christopher Chester
    aka Chainsaw Chester

  • Everybody vote everyday. We are so close to number one. We need your help. I’m reeds cousin and I really want to see Team Sanfillippo win so we are that much closer to finding a cure.

  • mucopolysaccharide-MPS

  • Thank you everyone for all your votes, Jesse may not benefit for a cure these days, but I look at all the young children and the ones of the future who still have a fighting chance. 10 yrs ago I was told there woould be a cure a soon, researchers were working on it. I can honestly say it’s been ten yrs and if not for these parent formed 501(c)3 organizations we would not be so close. I can honestly say that we will most likely see USA trials within 1-3 yrs I think. Thank you for voting every day to help these children have a future!!! xoxox
    Patty~ mom to Jesse

You can follow any responses to this entry through the RSS 2.0 feed.

Trackbacks / Pingbacks